Walk with the Riedmiller Family...

Wordless Wednesday

2011-09-28T10:08:00.002-05:00

03.02.11

2011-03-02T13:26:00.009-06:00

03.02.11. Today is the official awareness day of the nationwide campaign to end the hurtful use of the “r-word.” Let's spread the word about how we can encourage acceptance of people with intellectual disabilities and discontinue the derogatory use of the r-word in our schools and communities. Our son Joey was born with Cornelia de Lange Syndrome. Take a moment to look at all these beautiful faces and let's promote the use of the new r-word: Respect.

I've taken the pledge, have you? Join me in supporting Spread the Word to End the Word. It's time to put an end to hurtful and dehumanizing language. Take the pledge to end the r-word by clicking here.

Have you ever been...

2010-07-11T00:52:00.006-05:00

We recently attended the Cornelia de Lange Syndrome National Conference in Dallas. There is only one word to describe this experience...amazing. It was so good to be with people who know exactly what you are going through. Who understand what it's like to walk in your shoes. And who support you and love your children exactly the way they are. To those of you we met in Chicago in 2008, it was such a pleasure to see you again friends. To those of you we met for the first time in Dallas, it was awesome to meet you and we look forward to long lasting friendships. And to those of you we didn't get a chance to meet yet, we are already looking forward to the Chicago Conference in 2012. The following is a poem I wrote to celebrate the CdLS Conference, the great friendships that were formed, and the wonderful memories that were made.

Have you ever been
to a wonderful place
Where all you need to get in
is a beautiful face?
Long eyelashes and
an upturned nose
Small hands and feet
there were plenty of those!
Eyebrows that meet in the middle,
developmental delays
Feeding difficulties and reflux
all cared for in different ways.
Thin downturned lips
all lifted up with smiles
To get to this place,
families traveled for miles.
Because once they get there,
they are welcomed and hugged.
And while they are there,
they know they are loved.
No shirt, no shoes
no problem at all.
Moms to the rescue
when diapers explode in the hall.
Feeding tubes and wheelchairs;
babies scooting on the floor.
Families sharing stories,
new found friendships galore.
No one pointing and staring
or giving you "the look"
No need to explain -
you are off the hook.
Your child is my child
we share sorrows and joys
There is so much in common
with our girls and our boys.
Words of wisdom are offered,
as well as comfort and advice.
You will find encouragement and support -
a shoulder to cry on if you like.
When you are at this place
we'll call CdLS town,
Your spirits are lifted -
there is never a frown.
You wrap love in your heart,
your soul is renewed.
Everyone understands
and your worries are few.
So when you are struggling
and feeling alone
Let the memories of this time
comfort you at home.
Have you ever been to this
wonderful place?
I have -
and I will cherish each and every
Beautiful face.

Today is CdLS Awareness Day

2010-05-08T12:47:00.003-05:00

Today is Cornelia de Lange Syndrome Awareness Day. Today, and every day, we celebrate all of the beautiful children in the CdLS family circle and all of their amazing accomplishments. Please take a moment to view the above CdLS Awareness Video. Visit the CdLS Foundation website to learn more about Cornelia de Lange Syndrome. With your help, we may be able to find one child and one family that may be seeking answers and need support. I am an awareness coordinator for the CdLS Foundation ~ something I greatly enjoy. Today I am sharing with you the reasons why I became an awareness coordinator ~ and why it is so important to reach out and let families affected by CdLS know they are not alone.

Our son Joey was born in 2004 and diagnosed with Cornelia de Lange Syndrome (CdLS) soon after. Since his birth, my family's lives have changed dramatically in many ways - many of them good ways.

Even though therapy sessions, doctor visits and special education services have become our lives, our normal, we have been blessed with a gift more valuable than we could have ever imagined. Joey has taught us so much about life and love; he has lifted our spirits and enriched our souls.

He also inspired me to become a volunteer awareness coordinator for the CdLS Foundation. There are so many important things to learn and share about CdLS. My family has chosen an open and honest approach when sharing information about Joey's condition. The more people learn about CdLS, the more comfortable they are around Joey, and that is beneficial to him.

The CdLS Foundation provides information, support and the materials I need to promote awareness in my community through various activities. Educational awareness about CdLS is such an important step towards understanding and acceptance. It is also very important to let other families know they are not alone in the daily challenges of raising a child with CdLS. I know firsthand that it helps to know there is a huge network of support available.

And finally, I became an awareness coordinator for the CdLS Foundation because I want to let people know it is okay to have a child with special needs. It really is okay. We don't seek sympathy. We don't have to be embarrassed or remain secluded. We just want the world to accept our children for who they are, for the good things they have to offer, for the smiles they create, and for the hearts they capture. Becoming an awareness coordinator has been one of the most important, and best, decisions I have ever made. Promoting awareness about CdLS gives the the strength and courage I need to be a strong voice for Joey and all children with CdLS.

CdLS then... and CdLS now...

2010-04-26T13:26:00.009-05:00

Six years ago today, a beautiful baby boy was born. We named him Joey. He had lots of hair, tiny hands and feet, and the faintest little cry. He was everything we had hoped for and more. We loved him and he loved us. That's all we needed. And then our world came crashing down. There was something wrong. We did not know it at the time, but we were about to become very familiar with the words Cornelia de Lange Syndrome. CdLS. Six years ago, the letters CdLS were very scary and packed a powerful punch. They meant Challenges. Not just the normal Challenges parents face when bringing home a new baby, but challenges you never thought you would have to face in your life. The Challenges of raising a child with special needs, the Challenges of an uncertain future, the Challenges of telling family and friends something is wrong with your baby and the Challenges of juggling numerous doctor's appointments. Wondering what kind of Challenges Joey would face in his life. The letters CdLS also brought Denial. Of course no one ever wants to believe there may be something wrong with their child. Sometimes it's easier to think there's not than to face up to it and deal with what is happening. I spent a lot of time in Denial ~ we couldn't get any clear answers about Joey for quite awhile so I figured if no one could give us a diagnosis he must me okay. Right? Wrong. Denial was my enemy ~ it kept me from getting the answers I needed, the help Joey needed. But once I decided to leave Denial behind and worked through my grief, good things started happening. Good people entered our lives. Some answers were found ~ we were on our way to the most amazing journey of our life. 6 years ago, we were also Lost. We couldn't find direction ~ wandering aimlessly through life knowing in our hearts something wasn't right but letting our heads keep telling us everything was okay. Being Lost is scary. Being Lost is overwhelming. Being Lost means we are alone. It's frightening to feel helpless and Lost. But we are lucky ~ we found help and support and now know we are not alone. You know Amazing Grace ~ the line about "I once was Lost, but now am found"? That is so true for us. We were also full of Senseless, unanswered questions. Why is this happening to Joey? Why is this happening to our family? Will he be okay? Will he live? Die? We couldn't make Sense of any of it. We couldn't wrap our heads around it - couldn't grasp what was going on. Challenges, Denial, Lost, Senselessness. This is what we thought CdLS meant. But once we decided to face CdLS head on, these letters took on a new meaning for us. The feeling of helplessness and hopelessness lifted. Today, for our family, the letters CdLS aren't scary anymore. They are for new things ~ good things. Now we have Courage. Courage to face all the challenges that go along with raising a child with disabilities. Courage to stand up and let people know it's okay to have a child with special needs. Courage to have strong voices. We've learned a lot about Courage from Joey. He's shown it every day of his life. We also have Determination. We are Determined to have Joey get the help he needs. Determined to keep seeking support and raising awareness about CdLS. Determined not to let the feelings of hopelessness and helplessness ever return. And Joey is very Determined to reach his goals and be the best he can be. Love is also with us. It is unconditional and keeps us going through the tough times. Joey has taught us so much about Love ~ his smile, his laugh, his heart ~ he is so full of Love and shares it with everyone he meets. Love surrounds us. Having a child with disabilities helps us realize how blessed we are to have been chosen to be a part of the special needs world ~ Joey's world. We don't know where we would be without the Love and support of everyone we've gotten to know because of Joey. Today, we also have Strength. A strength we never knew we could possess. My husband summed it up best today when he said (via his facebook status this morning):

"Dear Joey, Happy 6th Birthday today son. When you were born, I was convinced that I wasn't strong enough to raise a child with special needs. After watching how hard you work and how far you have come, I have changed my mind. I am a better father and a better person because you came into our lives. Your mother and I are proud of you and love you very much. Keep working hard. Love, Dad."

Now, my turn...

"Dear Joey, Happy 6th Birthday today son. Today, we celebrate you and all you have accomplished. We celebrate all the joy you have brought to our lives. We celebrate today because it marks the day God thought we were worthy enough to be blessed with such a special child. You have shown us the way and guided us into a wonderful life and for that we are grateful. You are the best teacher I have ever known. Your dad and I and your brothers and sisters are proud of you and love you very much. Keep up the good work. Love, Mom."

Bad Blogger?!?! Not me!

2010-04-09T13:25:00.010-05:00

I have been a bad blogger lately. Really bad. Easter has passed, baseball season is here and I haven't even posted any pictures from Christmas! Like I said - bad blogger! And I'm not sure where to place the blame. I could blame the kids, the husband, the cats, the house, the dishes, the job, the weather, the neighbors, the computer, the mailman, the economy...the list could go on and on. Oh, and don't forget facebook. But that probably wouldn't be fair - would it? It's been a long, cold, snowy winter but we are emerging victorious. The snow is all gone now (finally) and we are looking forward to a glorious spring and summer. Hopefully. But a couple days ago it was like 30 degrees, rainy and windy. Today it is 70 and gorgeous. So who knows. Tomorrow we could have another blizzard and be snowed in again like we were for Christmas. And New Year's. And Valentine's Day. And President's Day. And St. Patrick's Day. Ok, maybe we weren't snowed in on St. Patrick's Day, but there was still some snow around. The others are legitimate.

All in all we are good. Joey is doing well - his walking is quickly turning into running and it is awesome. I will chase him to the ends of the earth if I have to and enjoy every minute. He loves to go to school, be outside and take a bath. He is mastering the hand gestures to itsy bitsy spider and will start his 4th season of horseback riding therapy soon. Every day it seems he learns something new - and it generally brings tears to my eyes. He's come a long way.

The other kiddos are good too. Emma and Abbie are always a team - when one is doing something the other is usually involved. Emma turned 5 in March and is all registered for kindergarten this fall. Abbie will be 4 in May. John and Tommie are in the midst of baseball season. Keeps us running all over but wouldn't change a thing. Too soon and they will be heading off on their own. Not sure if I like all this - it means I am getting older too and the kids will be gone before we know it. But I will hang on to them for as long as I can.

Shawn and I are alright too. Usually exhausted but holding our own. Sometimes we don't know if we are coming or going but it's all good. In March I got a phone call from one of the radio stations in Omaha. For those of you who don't know, I am a huge fan of Bon Jovi. I have loved them since I was a teenager - their music never gets old! Shawn knows full well that if Jon Bon Jovi ever comes knocking on my door, he's out and Jon is in! The DJ told me that a good friend of mine had contacted them about our family and said they had two tickets for their concert that night! I was ecstatic to say the least! It was overwhelming! The concert was awesome - it felt so good to be young again and forget our worrys for a few hours! 25+ years and Bon Jovi can still rock the house! Thanks Brenda - what you did and that night will stay in my heart forever!

For now, we keep pretty busy. I can't wait for our trip to Dallas in June for the 2010 CdLS Conference. I am so excited! Got the registration forms sent in, got the hotel room booked, and now I am searching for some low airfare from Omaha to Dallas. It will be so good to be with our CdLS friends and families - see some familiar faces and make new friends too. When we went to Chicago in 2008 (our first conference) it was fantastic. The conferences are life changing and give us just what we need to keep going. It is so good to know we are not alone and everyone feels like one big family. If you are a CdLS family reading this and are undecided about going, please go if you can. It's not to late to sign up. You will be so happy you did.

Here are some current pictures from Easter. When spring is in the air, I have no motivation to post Christmas pictures - too many snow memories! Hopefully one day soon I can put together a slide show of pictures from the last few months. You know, in my spare time. In the meantime, I promise to get back to blogland and catch up with what everyone has been up to. Happy Spring!

Joey has figured out how to work several door handles...

Our five with our niece and two nephews on Easter...

Emma, Abbie and Joe with our niece Aubree and nephew Cooper...

Tommie and the girls...

Joey WALKING with his Easter basket hunting for eggs in Grandma's back yard...

Leaving the Easter egg hunt with baskets of candy...

Joey and dad looking for eggs at one of our local hunts...

The 3 little ones with the Easter Bunny...couldn't convince John and Tommie to go

Tommie got confirmed on Palm Sunday at our church...

Emma and her birthday cake made by Grandma Jerry...she and Joey are now 5 together for a few weeks

A picture of Jon Bon Jovi (my first love) from the concert we went to...

Rare Disease Day

2010-02-26T09:17:00.004-06:00

The CdLS Foundation is a partner in Rare Disease Day, which takes place Sunday, Feb. 28. Take a moment to learn about this annual world-wide event by following the link below. You can even share your own CdLS story. Send it to rarediseaseday@rarediseases.org (500 words or less and please be sure to copy the CdLS Foundation at outreach@CdLSusa.org).

Here is our story...

Our son Joey was born in 2004 and diagnosed with Cornelia de Lange Syndrome (CdLS). CdLS is a congenital syndrome, meaning it is present from birth. The exact incidence is unclear, but CdLS is thought to occur in approximately 1 in 10,000 live births. As with other syndromes, individuals with CdLS strongly resemble one another. Common characteristics include: low birthweight, slow growth, small stature, and small head size. Facial features include thin eyebrows (which frequently meet midline), long eyelashes, a short upturned nose, and thin downturned lips. Excessive body hair, small hands and feet, and incurved fifth fingers may also be indications of CdLS. These children and adults can battle such health conditions as gastroesophageal reflux, seizures, cleft palate, feeding difficulties, eye problems, hearing loss, behavioral issues, and developmental delays. Limb differences are also found in some individuals.

Joey is a source of extreme joy for our family. Blanketed by two older brothers and two younger sisters, he learns from them and they from him. He is one of the greatest teachers I have ever known. He has taught us patience and understanding. Joey has also taught us to take one day at a time and find joy in the little things. He has opened up a whole new world to us that we never knew even existed. A world we are blessed to be a part of. He has come so far and we are very proud of his accomplishements. Joey works very hard - he goes to kindergarten, attends physical, occupational, speech, and music therapies. He has also participated in equine therapy since he was three years old. All of these activities and therapy sessions have made it possible for him to reach his goals and for that we are grateful. We are also grateful to know that Joey has CdLS. So many children and adults are living without a diagnosis - therefore not getting the services they need to help them live their lives to the fullest. The Cornelia de Lange Syndrome Foundation offers information and support to children and adults and their famlies who are facing the daily challenges of living with CdLS. Without them we would be lost. If you know and love someone with CdLS, or if any of the characteristics described sound familiar for someone who may be living without a diagnosis, please contact the CdLS Foundation at 800-223-8355. The help you need is right there waiting for you.

A glimpse into our snowy lives...

2010-01-28T13:34:00.000-06:00

When you thought I wasn't looking....

2010-01-14T16:09:00.003-06:00

A message every adult should read because children
are watching you and doing as you do, not as you say.

WHEN YOU THOUGHT I WASN'T LOOKING

When you thought I wasn't looking I saw you hang my
first painting on the refrigerator, and I immediately
wanted to paint another one.

When you thought I wasn't looking I saw you feed a
stray cat, and I learned that it was good to be kind
to animals.

When you thought I wasn't looking I saw you make my
favorite cake for me, and I learned that the little
things can be the special things in life.

When you thought I wasn't looking I heard you say a
prayer, and I knew that there is a God I could always
talk to, and I learned to trust in Him.

When you thought I wasn't looking I saw you make a
meal and take it to a friend who was sick, and I
learned that we all have to help take care of each other.

When you thought I wasn't looking I saw you take care
of our house and everyone in it, and I learned we have
to take care of what we are given.

When you thought I wasn't looking I saw how you
handled your responsibilities, even when you didn't
feel good, and I learned that I would have to be
responsible when I grow up.

When you thought I wasn't looking I saw tears come
from your eyes, and I learned that sometimes things
hurt, but it's all right to cry.

When you thought I wasn't looking I saw that you
cared, and I wanted to be everything that I could be.

When you thought I wasn't looking I learned most of
life's lessons that I need to know to be a good and
productive person when I grow up.

When you thought I wasn't looking I looked at you and
wanted to say,'Thanks for all the things I saw when
you thought I wasn't looking.

Each of us (parent, grandparent, aunt, uncle, teacher, friend)
influences the life of a child.

How will you touch the life of someone today? Just by
sharing this with someone else, you will probably make
them at least think about their influence on others.
Live simply. Love generously. Care deeply.
Speak kindly.
Leave the rest to God

Heaven's Very Special Child...

2009-12-12T21:02:00.003-06:00

Heaven's Very Special Child

A meeting was held quite far from Earth.
It was time again for another birth.
Said the Angels to the Lord above-
"This special child will need much love.
His progress may be very slow,
Accomplishment he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away.
So many times he will be labeled
different,helpless and disabled.
So, let's be careful where he's sent.
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they are asked to play.
But with this child sent from above
Comes stonger faith, and richer love.
And soon they'll know the privilege given
In caring for their gift from heaven.
Their precious charge, so meek and mild
Is heaven's very special child."

Edna Massimilla

Santa's sleigh was in the shop...

2009-12-06T19:41:00.006-06:00

Santa Claus came to town so we took the kids to see the big arrival. Even the big boys went with us. It made for some great quality family bonding time. He arrived in a horse drawn carriage - we told the girls Santa's sleigh was in the shop and the reindeer were resting up for their big travels on Christmas Eve. The girls were a little scared to sit on Santa's lap - Emma never did and she also did not utter one word of her Christmas wishes to Santa. Abbie got a little more brave - she sat on Santa's lap and told him she wanted a princess for Christmas. She would probably do anything for a new princess! Joey sat on his lap too - he didn't even try to pull on Santa's beard! John and Tommie were good sports and earned a candy cane from Santa.
I was hoping for an awesome picture of all of them with Santa but it was pretty crowded in Santa's tiny house with him, the 7 of us and a lady from the Chamber of Commerce in there. The weather was beautiful and we enjoyed a nice ride in Santa's carriage before we went home.

Here comes Santa Claus...

He's getting closer!

There he is!

Riding in Santa's carriage...

Emma and Abbie were a little shy...

They did get closer but you can't see their faces! Too much light I guess!

Joey liked Santa right away!

Dad and Joey taking a little stroll...

John earned his varsity letter for football!

Our little cover boy...

2009-11-16T12:37:00.007-06:00

Is that a handsome face or what? Joey is on the cover of the latest issue of Reaching Out...the newsletter that the CdLS Foundation publishes 4 times a year. Reaching Out is full of all the latest news about Cornelia de Lange Syndrome, fundraising efforts and all kinds of helpful information. The picture of Joey was taken by Rick Guidotti of Positive Exposure last summer at the CdLS Conference in Chicago. To read the latest issue of Reaching Out, click here. If you are raising a child with Cornelia de Lange Syndrome or know someone who is, please contact the CdLS Foundation. You will be so glad you did. They are a wealth of information and support. You will discover that you are not alone.

Halloween adventures...

2009-11-03T10:34:00.005-06:00

Halloween has passed. Setting the clocks back an hour has passed. 23 days til Thanksgiving. Only 51 shopping days left til Christmas. Is it just me or is 2009 getting away from all of us? I feel like everything is happening in the blink of an eye! We had a lot of activities we took part in for Halloween. Our local downtown businesses had a trick or treat day. We went to a Halloween Carnival in a neighboring town. Our church hosted a Halloween party for kids. Joey and the girls had classroom parties. The day before Halloween, I successfully managed to get 1 eighth grade science project, 1 crocodile, 2 princesses, 2 teenagers, 12 teacher treats and 68 kid treats out the door by 7:45a.m. Yay for me! I also sported my orange light up Halloween shirt and helped out with Joey's kindergarten party. And don't forget the good old fashioned trick or treating. We have enough candy in our home to feed an army 3 square candy meals a day for several weeks to come. I also found a new favorite - Reese's Fast Break. Chocolate, peanut butter and soft nougat. It is yummy! But of course I didn't figure that out by sneaking into the kid's candy when no one is home! I would never, ever do that!

Here we are at a Halloween party at our church. There were all kinds of games to play!

Joey wore the same costume he wore last year...it still fits and it keeps him warm when we are trick or treating! We will have to see if it sticks around for a third year!

Emma wore a mermaid outfit and Abbie wore a Snow White dress...they wanted to save their princess costumes for their school party and trick or treating.

That's Tommie under the hoop - he was helping at the basketball game station

Ready for trick or treating! Princess Emma in pink and Princess Abbie in purple! She claimed she was still Snow White - just dressed for a party!

Caught a couple shots of Joey walking in his crocodile suit...

Tried to get them to stand still together for a picture...

The boys took them trick or treating to our neighbor's house. Right after this the boys took off to be with their friends. We weren't cool enough to hang out with I guess!

I went and helped at Joey's kindergarten Halloween party! Put on my orange light up Halloween shirt and had fun with the kids. Joey is at the end of the table with his para having a cookie.

Here's Joey class in their costumes...they got to parade around to the other kindergarten classrooms.

X marks the spot

2009-10-27T13:43:00.007-05:00

I'm not sure if you can read the above picture, but it is Joey's Kindergarten report card. He brought it home in his folder the other day. At first I was so excited! I'm thinking to myself I can't wait to look at it! I am so proud of how well he is doing in school! His social skills are great, his teachers really like him, he's been doing some great learning activities and his walking is getting better and better every day! As I started to read his report card, my emotions slowly deflated. Knows letter sounds...x. Knows letter names...x. Uses sounds to make words...x. Understands math concepts...x. Writes name...x. Counts objects correctly...x. I'm thinking "x"? What kind of grade is "x"? It turns out that "x" stands for "not evaluated at this time". I'm not sure what I was thinking...I guess I should have prepared myself somewhat before I looked at his report card. I guess I didn't know what his first kindergarten report card would be like. I was just excited to see it. I don't know if I thought I would see A's and B's like on John and Tommie's report cards...or E's, S's and G's for excellent, satisfactory and good. I don't know. All I know is I was sooooo excited that Joey brought home his first report card! And I can't leave out that he got two G's for music and two S's in P.E. Yay Joey! But it was seeing all those x's that really brought me down. Why is it when things seem to be going so great for your child there always seems to be one word, one phrase or one action that just knocks the wind out of you? Not evaluated at this time. Of course he can't be evaluated for these skills at this time...he is unable to do them. This is what hit me like a ton of bricks. When will he be able to be evaluated for these skills? When he is 10? 15? 20? 30? 40? I know he is unable to perform the same tasks as his kindergarten peers - but he has a great ability to learn. We have high hopes that someday he will be able to do these things. It's just kind of scary to not know when that someday will be. When you are raising a child, regardless of their abilities, there are joys and triumphs and unfortunately some sorrows too. Hopefully the joys and triumphs far outweigh the sorrow. This report card called life is full of A's, B's, G's, S's, E's and of course X's too. We just have to do the best we can. A friend of ours has this saying in her email signature: "Nobody can go back and start a new beginning, but anyone can start today and make a new ending." So that's what I'm gonna do.

"You tried to win tickets???"

2009-10-22T12:48:00.008-05:00

Shawn called me from work a couple weeks ago and said "Guess what? I just won 4 tickets to Vala's Pumpkin Patch on the radio! I was caller number 5!" Now Shawn is a good sport and usually goes along with any crazy schemes we may have of taking all the kids somewhere, but there is usually a little mumbling and grumbling. Plus the patch he won tickets to is about an hour and a half drive each way from our home. Needless to say, I was a little surprised that he would try to win tickets to this place and promote an out of town trip with the kids. So I said "You actually tried to win tickets to a pumpkin patch?" And he said "Sure, why not?"
Now I did a double take and wondered if this was the same husband talking that I have been married to for 17 years. I said "Okay! That's great! When should we go? How about next Saturday?" He says "Well, Nebraska plays football on TV that day and such and such game is on at 3:00 and then I wanna watch so and so play at 7:00 and..." No more doubts...this was definitely Shawn I was talking to!

So I looked at our calendar and discovered the kids had no school on October 19. A teacher work day or something. Shawn got the day off from work and the plans were set! We had a great time! The weather was gorgeous...we really lucked out because it has been cold, windy and rainy here for quite a few days. Monday it was 75 degrees, sunny and the perfect day to spend outside. John had to stay behind because he still had football practice in the afternoon. I could tell he was deeply saddened to have to stay home...a quiet house, computer and Xbox all to himself, his car in the driveway and $20 in his pocket "in case he needed anything". Of course he really wanted to go with us (yeah - right!).

We had a fantastic day filled with pig races, dragon shows and jumping pillows. Did I mention the Barnyard Animal Band and giant rocking chair? Yes, there were pumpkins too. Also, before you ask, Emma is wearing a blue/greenish tye-died type shirt and pink and grey striped pants. Why? It wasn't a battle I was gonna win. She picked out her outfit the day before we went and was bound and determined to wear it to the pumpkin patch. She wanted to be pretty for our trip she said. How can you resist that? Plus I wore an orange Happy Halloween shirt that lights up when I move. So technically she wasn't out of place. You gotta dig it.

(Ummmm...yeah - somehow I left these two pics out of the slide show)
Us at the beginning...How tall this fall?

Tommie and the girls ended the day with giant lollipops!

Do You See Me?

2009-10-17T12:01:00.002-05:00

The above video was made by a good friend of our family. She used to be Joey's Service Coordinator for the Early Development Network up until he turned 3. She had a vision of giving all kids with disabilities a strong voice...and an opportunity to be heard. When she approached us about including Joey in the video of course we said yes. She did a great job and we are so proud to be part of such a wonderful project. Thanks Jen - you are awesome!

Awareness about any disability is a big step towards acceptance. We have found in our experience that the more people that know and understand about Cornelia de Lange Syndrome, the more comfortable they are around Joey which is greatly beneficial to him in all aspects. We have to be the voice for our children, stand strong and help people realize how much of a blessing our children are in our lives. How much they teach us. How imporant they are to us. And how much we love them. Don't feel sorry for us...be happy that we are so fortunate to have these amazing children blessing our lives every day.

Please feel free to share this video with friends and family...you never know when you may reach that one person and help them on get on the road to acceptance. Let them know the journey will be awesome...and the trip will be the best one they have ever taken.

You can get the link to the video by clicking here.

Special Exposure/Wordless Wednesday

2009-10-14T17:06:00.001-05:00

Who needs toys when I've got this great box???

Read Joey's story and help support Team CdLS

2009-10-09T13:33:00.009-05:00

As you all know, our son Joey was born in 2004 with a rare genetic condition called Cornelia de Lange Syndrome. Our lives have changed in so many ways since the birth of Joey. Therapy sessions, doctor visits and special education services have become our lives - our normal. But we wouldn't have it any other way. Joey is a bright star in our lives - he is a gifted teacher, a hard worker and a loving human being.

The CdLS Foundation has been a great resource to us. We receive an immense amount of information and support. There is always someone available to lend a helping hand or offer guidance to families who face the daily struggles of raising a child with Cornelia de Lange Syndrome.

On October 11, many dedicated individuals will hit the pavement and run in the Chicago Marathon as a part of Team CdLS. For this we are grateful. Their goal of helping to support the wonderful work of the CdLS Foundation needs our help too. This year I am participating as a phantom runner in hopes of giving back in some way all the wonderful gifts we have received from the Foundation. Below, please read Joey's story and consider giving a donation to this awesome organization and help Team CdLS reach their goal. After you have read Joey's story, please visit our First Giving Page by clicking here. Donations through this site are safe and secure. Give as much or as little as you like, but please help Joey and the other children and adults like him to continue to receive the awesome support of the Cornelia de Lange Syndrome Foundation.

Joey's story

Joey was born April 26, 2004. My husband & I already had two sons, John who was 10 at the time, and Tommie, who was 8. We had tried to have another child for 4 unsuccessful years, and had resigned ourselves to having only 2 children. Heck, we would still be spring chickens when they graduated and left home! What would we do with ourselves? Needless to say, we were caught by surprise when we found out I was expecting after all this time. We were very excited and nervous too - it had been a long time since there had been a baby in the house, and by this time the old high chair, swing, playpen(are they even called playpens anymore?), etc. were long gone. Everything now-a-days is battery operated, plays music, vibrates, and lights up. No hand cranked swing for this little one! Anyway, my pregnancy went off without a hitch, although I developed gestational diabetes and had to keep tabs on that. I only had 2 or 3 ultrasounds (and was amazed at the pictures and video you can get now) and there was no indication that anything had gone awry. The baby was growing well and we opted not to find out what we were having. We went to the hospital on Monday, April 26, so I could be induced (I was also induced with the previous kids) and our beautiful son Joseph Edward was born at 4:41p.m. weighing 7lbs. 1oz. Although he was smaller than the other two boys (8lbs.2oz, and 8lbs.9oz. respectively) he appeared to be healthy and doing well. His blood sugar was low, but this is to be expected from babies with moms who have gestational diabetes. So the happy phone calls were made to relatives and friends, my mother-in-law brought the boys out to see their new brother, my sister came to visit, and so began the whirlwind that comes after you have a new baby. I went to bed that night, feeling tired but comfortably happy, with our long awaited new baby snuggled in the nursery. The next morning when I awoke, I was gingerly getting ready to take a shower, when the doctor knocked and came in on his rounds. After asking the standard questions about me, he proceeded to tell me that Joey was doing well, but he had some pediatricians come in and take a peek at him and they think he might have something called Cornelia de Lange Syndrome. Here I am, in the ever fashionable hospital gown, towel in one hand, underwear in the other, and someone was telling me there was something wrong with my baby. Wait, back the truck up. I was floored. "What do you mean, there's something wrong? He was fine, no one said there was anything wrong with him! What is this Cornelia de Lange Syndrome, is it like Downs Syndrome? Is he alright? You think he's (forgive me here) retarded? Is he sick? Is he healthy? Will he be able to walk, talk, go to school? What's wrong with him? What are we supposed to do?" I will admit, yes, I was flipping out. Here we had this seemingly healthy, full term baby, and now someone was telling me there might be something wrong? No way. Not my kid. Not us. Not my family. The doctor went on to say that he has some facial characteristics typical of the syndrome, and that they were going to do ultrasounds and scans, and blood tests, and this and that, and can they have my permission to take his picture to send it to some geneticists? Is there anything he can do for me right now? Let him know when my husband gets here, and he will come in and talk with us. In the meantime, try to relax, and I will put you in touch with the right people. The doctor left, I am still clutching my underwear, and I must call Shawn to tell him to get to the hospital, there may be something wrong with Joey. How do I make a phone call like that? And let me tell you, it's one of the hardest things I ever had to do. Shawn answers, I say get to the hospital, they think there's something the matter with Joey. He says "What?" I say "They think Joey might be (forgive me again) retarded!" He says"What?" and we go on like this for a few minutes. Unbeknown to us, our lives had just taken a dramatic turn towards the path of geneticists, therapists, all kinds of people with titles ending in "ist". When my husband arrived, we clung to each other, tears rolling down our cheeks, he asking questions, me not having any answers. What do we do now? We had no clue. We called the nurse to have Joey brought in. We sat down and waited, trying to comprehend everything that had happened in the last 45 minutes. 45 minutes?!? Is that all it took to turn everything we hoped for, prayed for, dreamed for into a spiraling trip into a life that we had no idea would be like? Enter, the nurse, with our darling son. She must have caught wind of what was going on, because she started in on a spiel about how she'd seen babies diagnosed with something before, only to have it turn out there was nothing wrong. She was sure Joey would be fine. Is she trying to make us feel better? I suppose, in her own way. I wanted to hold Joey. I tried holding him, I really did, but all I could do was cry, and search his face for any signs of this Cornelia de Lange Syndrome, not even knowing what I was looking for. I tried holding him, I really did, but I was too scared I would find some evidence that something was wrong. Soon, I had to give him to my husband, saying I'm sorry, I just can't hold him right now. I felt terrible, what kind of mother has a precious new baby and is too afraid to hold him, afraid of what she might discover? Me, I guess. And so began my trip into denial, which I hate to admit lasted for the better part of Joey's first year of life. The doctor came in after an hour or so of Shawn holding Joey, and me wanting desparately to, but just couldn't at the time. It's hard for me to explain, but I guess I can blame it on the mind numbing fear that was racing through my body. He said they were going to do an ultrasound of Joey's brain (what?) and basically his whole body, to see what they could find. He had already been in contact with some geneticists in Omaha, and normally it takes 3-4 months to get an appointment, but he was able to pull some strings and get us in a week from tomorrow. Do we have any questions? Questions? Of course we have questions. What are we supposed to do now? Is he healthy? Can he see? Can he hear? Is he in pain? What is Cornelia de Lange Syndrome? Will he walk? Will he talk? Is he sick? What does all this mean? Where do we go from here? Joey showed no signs of distress, was good size, but was having some trouble taking a bottle. He showed some facial characteristics of CdLS, and also small hands and feet. He does not have enough characteristics to say that this is definately what he has or doesn't have. He should be able to go home tomorrow. Okay, so we have a baby that someone thinks there is something wrong with, possibly CdLS, but no one can say for sure at this point. So what did we do? The next day, we took him home of course, and tried to absorb everything that was happening. At home, we took care of him, just like we did our other kids. Only this time, when Shawn was at work and the boys were at school, I would wander around the house bawling like a maniac, trying to find some answers to something I didn't want to believe was true. When Joey was 10 days old, we took off for Omaha to have our first encounter with a geneticist. He examined him, telling us he does have some of the signs of CdLS, but not enough to say for sure if this is what it is. He has the general facial qualities, small hands and feet, only one line across the palms of his hands, but doesn't have any of the health problems that are associated with this particular syndrome. And guess what-there is no blood test currently available to recognize CdLS. Great. So what do we do now? We make a follow-up appointment and head home with this precious baby and no one can definately tell us one way or another what is going on. So, like I said, I was in a deep state of denial, but I knew deep in my heart something wasn't quite right. When Joey was about 4-6months old, we noticed that he wasn't doing some of the "typical" things a baby his age should be doing. No rolling over, no wanting to sit up, and basically falling into the good old "failure to thrive" category. When he had a check-up with our family doctor, we discussed this and he gave us a referral to our local children's therapy facility. He began attending when he was around 8 months old. Meanwhile, I will still blame denial as I had not yet bothered to reach out to any early intervention programs or do any research about Cornelia de Lange Syndrome. Oh, and did I mention that through all this, I became pregnant again? We never thought that was in the cards, given how long it took to have Joey. Our beautiful daughter Emmaletha Mae was born March 14, 2005 as healthy as can be, weighing 8lbs. 1 oz. and only 10 1/2 months younger than her big brother. Our other daughter, Abbigail Diane followed along 14 months later, also as healthy as can be, weighing 9lbs.1oz. But these are stories for a different day. When Joey was around a year old, we had an appointment with a specialist to have him evaluated for a cranial helmet, as his head seemed to be a little misshapen. Well, he didn't meet the criteria for the helmet, but this particular doctor had some experience with CdLS, took one look at Joey and declared that he had Cornelia de Lange Syndrome, no doubt about it. And I'm like okay, someone has finally told me that he definately knows this is CdLS. That's all the kick in the rear I needed. I climbed out of my pit of denial, and finally took some action. I contacted all the early intervention services I could find, and one of the most important things I have ever done was to contact the CdLS Foundation. They are an incredible wealth of information and support. Since that day, we have hit CdLS full force and done everything we can to enrich Joey's life. When the denial phase was over and done with, there was a whole new world open to us. The more we learn and share about Joey and the syndrome he has, the better off he is. We try to utilize every resource available and spread awareness about CdLS every chance we get. I do regret not being honest with myself that first year, and not getting the help we needed right away. As much as I would like to, I can't turn back the clock. All we can do is forge ahead, take it a step at a time, and pray for the best. I would like to sign off with these thoughts--- Yesterday, I took Joey to therapy, and his PT took him outside for a little workout. As I was watching them through the window, he played in the play house and enjoyed some sand and water time. And something I will never forget, she had him climbing up the stairs and sliding down the slide. She put him in the swing, and he was actually enjoying it, which is not typical of Joey because swinging is usually one of his least favorite things to do. He was laughing and smiling and playing. It was one of the best days of my life.

CdLS Family Gathering...

2009-10-05T16:54:00.004-05:00

On Saturday, we had the pleasure of attending a CdLS family gathering here in Nebraska. We had such a good time! It was hosted by Christy and Dave, whose daughter Baylee has CdLS. There were 5 families in attendance - Vinny was the youngest at age 15 months and Beth Ann was the oldest at age 20. In the middle is Joey, age 5, Baylee, age 13 and Katy, age 15. It was so nice to get together with other families that have children who have the same syndrome Joey does. I think we could have talked and laughed and compared notes all night! We had a delicious meal and yummy desserts. It feels like we are all old friends and hated to have our time together end. Hopefully we can get together again soon! I can't hardly wait for the CdLS National Conference which will be held in Dallas in June 2010. Here are a few pictures from our time together!

Joey, John and Vinny

More Joey, John and Vinny

Shawn, Joey, John and Vinny

John and Vinny

John, Abbie, Vinny and Emma

Our family kind of liked Vinny - can you tell?

Me and Vinny

More me and Vinny

Beth Ann

Katy

Delicious food and fellowship...

Beth Ann, Katy and Baylee - aren't they gorgeous! If you look close you can see Joey flipping the light switches in the background!

Time for Thursday 13!

2009-09-24T20:51:00.006-05:00

Holy cow! Has another week passed by since I revived my weekly Thursday 13 post! How has your week been? Ours has been good - despite a small outbreak of the sickies around here. I had to pick up Joey early from school Monday (he had thrown up) and kept him home from school Tuesday and Wednesday. But he had no fever, no further vomiting and was in pretty good shape although we did put a call into the doctor and got him on an antibiotic for a sinus infection. Unfortunately we had to reschedule a couple appointments we had for him on Tuesday...he was to have a check up with his GI doc in Omaha and we were also going to have some blood drawn from him for some genetic testing but we are doing all that next week instead. John stayed home from school on Tuesday too with a complaint of not feeling well but didn't really have any bad flu symptoms. His high school has really been hit hard with over 300 students absent in one day earlier this week. But hopefully this is all the further the illnesses go in our house - knock on wood, cross my fingers, etc., etc. Other than that, things are as usual - Tommie's 8th grade football game today, John's varsity game on Friday night and Shawn and I will celebrate our 17th wedding anniversary on Saturday the 26th. I know you are thinking how could someone as young as me possibly be married for 17 years? lol The jury is still out on whether we will get to go out on the town or not. What would we possibly do with ourselves - eat a meal that is uninterrupted and doesn't involve ketchup or kool aid? Go to a movie that is not rated G? Actually get to carry on a conversation? Oh my - the possibilities are endless! Well, enough about us - here's what you came for! The continuation of Thursday 13 - letter N!

1. Negotiate - Have you ever tried to negotiate with a 4 year old? It goes something like this:
Emma: "Mommy, will you color with me?"
Me: "Not right now Emma. Let's clean up all these toys first."
Emma: "Why?"
Me: "Because the house is a mess and we need to pick everything up."
Emma: "Why?"
Me: "Because we have to put all your toys away then we can color."
Emma: "Why?"
Me: "Because if we leave everything on the floor it might get stepped on and broken."
Emma: "Why would somebody break our stuff Mommy?"
Me: "Well, it wouldn't be on purpose, it would be an accident."
Emma: "Why?"
Me: "Because sometimes people don't mean to do some of the things they do."
Emma: "Why?"
Me: "Because sometimes things that happen are an accident."
Emma: "It was a accident we got our toys all over Mommy. But that way Joey has every toy he wants to play and he can be happy! So we better leave all the toys out Mommy!"
Me: "You're right Emma. Let's color instead!"

2. Nickelodeon - The home of some of our favorites! Sponge Bob, Dora, Diego - we know them all!

3. Notebook - I made a communication notebook that Joey takes back and forth to school. It's a great way for us to be on the same track as his teachers and keep up to date on day to day happenings.

4. Need - Joey and his CdLS friends need you to donate to the CdLS Foundation and help support the runners in the Chicago Marathon on October 11th. It's not to late! You can donate by visiting our fundraising page at First Giving by clicking here. Thank you!

5. Noise - There is usually some type of noise going on in our house - unless by chance everybody is sleeping. You get used to it - and develop a sixth sense to what certain noises mean. The flicking of the light switches, the opening and closing of the microwave, dishwasher, refrigerator or oven doors means Joey is busy. And the disaster you will find if you hear water running in the bathroom too long - it means the girls have been busy.

6. Noodles - We are a noodle kind of family - we love pasta!

7. Nursery - Do you have a favorite nursery rhyme? We like Hey Diddle Diddle.

8. Necessity - Baby wipes are a necessity in our house. We use them for everything from wiping little faces and behinds to cleaning counters and walls. I always keep some in our van too! They are great for quick clean ups!

9. Nuisance - Don't you find all those plastic ties and strings and tape inside a box containing a new toy a huge nuisance? Come on! How many does there have to be?!? We spend more time undoing all the packaging than the kid actually spends playing with the toy!

10. Neuroblastoma - I know a brave little girl named Charli. She battled a rare form of childhood cancer called Neuroblastoma when she was a baby. She is now a beautiful, thriving 3 year with great future ahead of her. September is Childhood Cancer Awareness Month. To learn more about Charli and help spread awareness about childhood cancer, click here.

11. Night - I love to look at the night sky full of beautiful stars!

12. Newton - Anybody out there love a good Fig Newton?

13. Najadaceae - Our random learning word for the week. It means: A monotypic family of aquatic plants having narrow leaves and small flowers.

Welcome to the revival!

2009-09-17T17:07:00.006-05:00

I was sitting here thinking I just feel the need to blog today. Anyone else ever get that feeling? You know the one where you feel like you have something to say but you aren't quite sure what it is or if you find out what it is you want to say you aren't quite sure how to say it? Exactly. So here I am feeling this way today and I think hey - it's Thursday! And what goes with Thursdays? 13 of course! I dig in my blog archives and find my last post of alphabetical Thursday 13 was in June with the letter L. Why did I stop you ask? Well, I'm not quite sure exactly. A lot of things were happening around that time and I guess I kind of lost the enthusiasm for the good old Thursday 13 posts (sometimes entitled Friday's Edition of Thursday 13 if you recall). Now I am thinking to myself if I would have kept up with them and my calculations are correct, I would have, should have, and could have been on the letter X this week. But why dwell on all that - right? So, you are all cordially invited to today's revival of my Thursday 13 posts which occasionally may come on Fridays. And I am not going to start over with the letter A. If you want those wonderful, witty lists you can go dig in my archives. My post, my rules - correct? lol So here we go...fun with the letter M!

1. Mystery - Are any of you familiar with the Dum Dum suckers? You know the little ones that come in a bazillion flavors and nobody every eats the popcorn flavored ones? Anyway, today I grabbed two Dum Dum Suckers for the girls when I picked them up from school. One was blue and one was mystery flavor. You'd think mystery flavor would be fun - right? Not right. Not where Emma and Abbie are concerned. They both wanted blue, Emma ended up with it and Abbie screamed all the way home - "I don't want Mystery Mommy! I want blue!" Note to self: Always take the same colored suckers to the girls. And also: Dear Dum Dum Sucker Company, When packaging your suckers, would you consider putting the same color suckers into different bags? This way my girls won't fight over which color they get and I won't have to pull my hair out. Thank you.

2. Music - Joey loves music! Whether he is playing it or hearing it, music is his thing! He also has quite a good rhytmn when he bangs his hands on stuff!

3. Mopping - Hate it. Totally Shawn's job!

4. Marathon - Team CdLS will be running in the Chicago Marathon on October 11. Please consider donating to my phantom run to help these awesome people out. Visit our donation page by clicking here.

5. Miracle - Miracles are happening every day. Make the most out of them.

6. Motor - We had to get the passenger side electric window fixed on John's car cause it didn't work right. Apparently there is a motor in there that was done for. You'd think this would be fairly inexpensive. That's what I was thinking anyway. $300 later I'm thinking not so much.

7. Macaroni and cheese - One of the few edible items all our kids agree to eat.

8. Mountains - I would love to take a long, relaxing trip to the mountains someday.

9. Missed - Tommie was sick and missed 2 days of school this week. Hopefully it stops there and the rest of us don't get it!

10. Mother - Being a mother is the hardest job I've ever had. But definitely the most rewarding!

11. Montana - The girls love Hannah Montana. We saw the movie this summer - it was actually pretty good! The last movie soundtrack I probably bought was Footloose or Purple Rain. A couple weeks ago I purchased the Hannah Montana Movie soundtrack. What have they done to me???

12. Money - Our two teenage boys seem to think we have a money tree growing in the back yard. News flash boys - money doesn't grow on trees! For example John came home tonight and asked for money to put gas in his car. We ask "Do you have any money?" He says "Yeah - 20 bucks. But I don't want to use it for gas!" Of course not. How silly of us.

13. Madrepore - Our random M word for the week. It means: corals having calcareous skeletons; aggregations of which form reefs and islands.

Will you go the distance?

2009-09-12T19:44:00.004-05:00

Please support my phantom run for children with CdLS.

Chicago Marathon
Sunday, October 11, 2009

To benefit the CdLS Foundation in honor of Joey

This marathon honors our children, you see
to help raise funds and provide services they need.
Your support will help our programs expand,
giving hope to loved ones, to help them understand.

No sneakers to lace up or stretching to do first,
no band-aids for blisters or water for thirst.
It's the most effortless 26.2 miles ever run,
join me with a gift and my race is already won.

Thank you for your gift, your time and your love
on behalf of the beautiful child named above.
For if life, as has often been said, is a race,
you've put the child that we love in first place.

Visit our fundraising page by clicking here.
Please consider giving $1, $2, $10 - whatever you can. A little bit can go a long way. On behalf of Joey and our CdLS friends and families, thank you.

Pictures as promised....

2009-09-02T13:40:00.006-05:00

Here are a few pictures of some recent happenings around here. Enjoy!

John and Joey went for a walk...

Joey says let's go!

My beautiful niece Aubree...

My nephew Cooper turned 2!

Abbie sports a Columbus High bandana...

Emma gets in on the act...

Great poses right?

Gotta love that smile!

Not exactly sure what Emma is thinking of in this one...

Abbie likes to play dress up!

Joey hanging out under his crib...looks like he's giving us the peace sign!
(And yes, that is chalk drawings on his dresser drawer in case you were wondering!)

Abbie...all smiles on her first day of preschool!

Emma...ready to go to preschool too!

2 preschoolers and a kindergartner!

Joey...all ready for his first day of kindergarten!

Off he goes!

Tommie...1st day of 8th grade

John....1st day as a sophomore

John playing varsity football...he's out there somewhere I swear!

Got a good shot of John on the sidelines...good old #75!

To my classmates...

2009-08-30T15:06:00.003-05:00

A couple weeks ago I shared a letter I wrote on Joey's behalf to give to his teachers. We got a great response - everyone feels comfortable and they know the lines of communication are always open. I also purchased an inexpensive notebook which we use to communicate back and forth with Joey's teachers every day. This way they always know what time he will be picked up, what he's eating for lunch, etc. It is also a great way for the teachers to write about Joey's day so we know how he spends his time. It is a wonderful communication tool. Anyway, tomorrow Joey is the Star Student of the day. Each child in the kindergarten class gets a turn at Star Student. They are able to bring 2 or 3 things to class to show the other kids and they are able to tell them a little about their lives. I wrote a "kid friendly" version of his teacher letter that will be read for him. A copy will also be sent home with each child with a CdLS brochure attached so their parents can learn more about Joey too. This worked well in preschool last year so I'm hoping it will work well for kindergarten too. Educating others about CdLS helps win the battle against ignorance. Here is the letter Joey will be sharing:

Hi! My name is Joey. I am one of your classmates in Mrs. Emerson's class. In a lot of ways I am just like you. I am 5 years old. I have a mom and dad, two big brothers and two little sisters. My brother John is 16 and is in 10th grade. My brother Tommie is 13 and is in 8th grade. My sister Emma is 4 and my sister Abbie is 3. They go to preschool. I have 3 cats named Reggie, Blackie and Casey. I like to play with toys and go outside. I like building blocks and music. I really like to play my piano. My big brothers play lots of sports so I get to go to lots of footbal, basketball and baseball games. They are a lot of fun! But you might have noticed I am different in some ways too. I was born with Cornelia de Lange Syndrome. I am not sick, I am just taking a little longer to grow and learn some of the things that you already know how to do. I just learned how to walk by myself this summer. I get to go to a fun place called Wiggles and Giggles and a nice lady called a physical therapist is helping me to learn how to get better at my walking. I don't know how to talk much yet either, but another nice lady called a speech therapist is helping me to learn words too. So don't be upset if you talk to me and I don't answer you back, I am still learning how to say things. Sometimes you might see me in a blue chair when I come to school. Don't be afraid, it's just something I can ride in to help me get around better. If you have any questions about me, please ask Mrs. Emerson or Mrs. Weiser and they will help you find out what you want to know. I am happy to be your classmate. I know we will have lots of fun together!
In other news, now that school has started we are busier than ever. We have had a lot going on - the boys started back to school and the girls started preschool ( there were tears - only on my part though!). We got a new roof on our house and been to watch John play in his first varsity football game. Joey went to a pediatric ENT last week and doesn't have to have his tonsils out! Yay! When we had him at clinic in July, the doc noticed one of his tonsils was enlarged so we followed up with an ENT visit. There are no growths or abnormalities and his tonsils don't look diseased so that was good news. One is just larger than the other. Unless that starts to give him problems with eating or breathing, they can stay put for now.

I will update with pictures of all our happenings later this week. In the meantime, you can catch me on Facebook - that's where all the action seems to be and it is a wonderful way to connect with other CdLS families. If you haven't joined I encourage you to do so. It is an awesome source of communication and support. If you and your family feel alone in the daily battle of having a child with Cornlelia de Lange Syndrome, come on over - you will find lots of friends. Oh yeah, and I have a farm or two that keep me busy over there too!

To my teachers....

2009-08-20T10:55:00.003-05:00

Here is a letter I wrote on behalf of Joey to share with his teachers at school. It will help them learn more about Joey and all the things he can do. I have found that by sharing information about Joey and being open and honest about his condition works towards his benefit. The more the teachers know about Joey, the more they will be able to help him reach his goals. With each letter I attached a CdLS brochure to help promote awareness about this syndrome.

To My Teachers:

My name is Joey. I am 5 years old. In many ways I am a lot like most of the kids in your class. I have a mom and dad. I have 2 older brothers and 2 younger sisters. I have grandmas, grandpas, aunts, uncles and cousins. They all love me very much. I live in a house. I have my own room. I have 3 cats. I like to play. I like to go to school. I also like to learn. But I am also different from the other kids too. I was born with a rare condition that is called Cornelia de Lange Syndrome. I am not sick. I am a little bit smaller than other kids my age but I am healthy. Kids with CdLS have a lot of similarities. We share the same facial features and have many things in common. If you would like to learn more about CdLS, please visit www.CdLSusa.org.

Now that I am in kindergarten, I am busier than ever. In addition to going to school, I get to go to a fun place called Wiggles & Giggles 3 days a week for physical, occupational and speech therapy. They help me in a lot of ways. I also get to ride a horse called Buttermilk once a week. This helps me get stronger too. My big brothers play sports so I also get to go to a lot of baseball, football and basketball games. We are a busy family!

Usually I am very happy. Some things that make me unhappy might be that my braces have gotten uncomfortable on my feet. Will you take them off for awhile so my feet can stretch? Or I might be hungry. I can eat crackers, cookies and other snacks myself. Could you help me with my lunch? I also might be tired. Sometimes when I get tired I get frustrated and mad. Will you take a few minutes to play with me or sing me a song? This always helps me feel better.

Even though I have a disability, I am able to learn a lot of things. I just need a little extra time and help. I may not be able to speak but I can communicate in other ways. I know how to use PECS and I am in the process of learning how to use my new Dynavox. Sometimes I will tell you what I want or need by taking your hand and showing you. I like to figure out how things work and the easiest way to do things. My mom says I am very good at this. I like building things, playing with blocks, music and playing with my classmates. I also like light switches. I like walking with my walker and I am able to take some steps on my own. I always like to go to school and I have the ability to learn new things. I know other kids with CdLS that can talk, read and write - it just took them a little longer to do these things. I know I can learn to do these things too. All I need is your help. Thank you. I am happy to be in your class!

Joey Riedmiller

Dear Joey

2009-08-18T09:27:00.003-05:00

Dear Joey,
Today I had to let you go. Just a little. You see, today you started kindergarten. You are such a big boy! When I asked you if you were ready to go to school today, you smiled and laughed and clapped your hands. I know in your own way, you were trying to tell me "Come on Mom - it's not so bad! I love school!" Thank you for that. To tell you the truth, this whole kindergarten thing is pretty tough on your old mom. I'm trying to be brave like you taught me but I am missing you so much right now my heart hurts. I know you are okay but I can't help worrying about you and wondering what you are doing right now. I am also crying a lot - I promise to stop before I pick you up from school today! I am so proud of you and all the amazing things you have accomplished in the last 5 years. It seems just like yesterday you were the tiny baby we brought home to love and take care of. Now you are off to kindergarten and I can't turn back the clock no matter how much I want to. I want to thank you for all I've learned from you and for making our lives so amazing. Thank you for picking me as your mom. Even though I am not with you at school, I want you to know my spirit and my heart are right there beside you the whole way. I know you will do a great job. I love you Joey.

Kisses & (((((Hugs))))
Mom

25 random things about Joey...Part 2

2009-08-06T13:33:00.002-05:00

I was originally tagged for this challenge and posted it on Facebook. If you are not a part of our CdLS family facebook network, I encourage you to do so. It is a great way to connect with families. I have completely enjoyed learning new things about the other CdLS kiddos this week and wanted to post Joey's list on our blog too in case some of you are not on facebook. Some of the similiarities between Joey and his CdLS brothers and sisters is remarkable. Thank you to everyone for sharing their information and their pictures. Their smiles just make my day!

So here goes, a new random 25 .... you now the drill - if I tagged you, its because I am interested in getting to know you and your child better. If you decide to post your own 25, please tag me.

1. Joey loves light switches. If he sees a light switch, you can bet he will turn it on. (And off, and on, and off...you get the idea!) If he can't reach it, he will find a way to get to it! :o)

2. Joey has a very sweet disposition. Most of the time he is content and happy with the exception of an occasional melt down.

3. Joey turned 5 in April. He is 3rd in the line of 5 children. He has two older brothers ages 16 and 13. He also has two younger sisters, ages 4 and 3.

4. Fortunately, Joey is healthy. Despite a sinus infection here and there, he has never had any serious health issues except for reflux. He had a fundoplication in January 2008 which did wonders for him.

5. Joey weighed 7 lbs., 1 oz. when he was born which is pretty good size for a child born with CdLS. We had no previous indication anything was wrong with him until the day after his birth. He now weighs 30 lbs.

6. Joey is in his third season of equine therapy. He rides a horse once a week from May thru October. He really enjoys it!

7. Joey has physical therapy twice a week, occupational therapy twice a week and also speech therapy twice a week. He has been going to the same therapy facility since he was 8 months old. The girls are wonderful with him! He always looks forward to going.

8. Joey will start kindergarten in a couple weeks. He had one year of preschool/playschool when he was 3 and one year of preschool when he was four. I am nervous for him to start kindergarten but I know he will be in good hands.

9. Joey doesn't have any hearing or vision problems. His hands and feet are small but proportionate with the rest of his body.

10. Joey likes to figure things out. He is always trying to find the easiest way to get something done. When we put new batteries in one of his toys, he always likes to use the screwdriver and he knows exactly what to do with it.

11. Joey loves music. I have lost track of how many keyboards he has. Of course not all them them have new batteries at the same time. I should own stock in Duracell!

12. Joey loves Legos. He likes to put them together, take them apart and make towers on his Lego table.

13. Joey likes to wear his shoes and braces. Usually the only way he will stand and walk is if he has his shoes on. He started walking on his own a few weeks ago (yay!!) but is still a little unsteady. He walks on his terms - just like everything else he likes to do.

14. His favorite song is The Ants Go Marching. If he is crabby or if there is something we want him to do, we sing this song and it works wonders!

15. Joey loves to be outside. This hasn't always been the case. He's come a long way!

16. Joey likes to have his head scratched. Right on the top towards his forehead. It helps calm him down if he is upset.

17. The only word Joey says is Mama. He can communicate his needs by emotions and gestures. If he wants something he will take our hand and pull it towards what he wants. He is very good with the Picture Exchange Communication System and recently started working with a DynaVox.

18. Joey is a little ladies man. Every woman or girl he meets falls in love with him. He has a lot of lady friends! :o)

19. Joey dislikes having his picture taken. Once in awhile we can get a good one of him but if we are trying to take a family picture or something he doesn't usually cooperate too well.

20. Joey is very strong. Stronger than you would think he would be because of his small size. And boy does he have quick hands! He is also the fastest knee walker you will ever see!

21. Joey has become very social. I think going to school really helped that. He used to want to be by himself all the time. Now he prefers to be where all the action is.

22. Joey is a great teacher. I have learned so much from him. Patience, understanding, trust, love...the list goes on and on. I am a much better person because he is in my life.

23. Joey is very observant. If something is different or has changed, you can bet he will notice it right away.

24. I am grateful for all of the wonderful people we have met because of Joey. He has enriched our lives so much it is unbelievable. I can't imagine my life any other way.

25. We are so happy to be a part of the CdLS family. I don't know what we would do without everyone's support. It makes each day better to know all of you are out there for us. :o)

Catching up....

2009-08-01T20:16:00.006-05:00

I didn't think I had much to blog about but when it gets down to it, there has been a lot going on around here. So time for some pictures and catching up. First of all, Joey's visit to the Children's Developmental Clinic went well. This is a clinic we go to at Children's Hospital in Omaha once a year and get to sit in a small room for 5 or 6 hours while different doctors and therapists come in and tell us what they think. I was smart enough this time around to take Shawn along for reinforcements so keeping Joey entertained wasn't entirely left up to me. All in all clinic went pretty well. They check his progress and make any recommendations they may have. I am happy to report that they were all very pleased with his progress (I knew they would be!). Everyone was delighted with his walking skills he has developed and he gained 4 pounds since he was there last. A couple of them do think his braces are a little short and recommended a different pair of shoes (possibly Sketchers) but all in all very happy with his walking. When the pediatrician examined him, he thought he noticed that one of his tonsils is enlarged. So this means we get to make an appointment with an ENT doc for follow up to see if anything needs to be done. And when we spoke with the geneticist, she finally convinced us to have blood drawn from Joey for CdLS testing. We will have this done in September when we go back for a GI appointment. Joey kept himself busy trying to escape out the door (as you will see from the pictures) and taking off down the hallway. He also discovered the chair makes a pretty good drum. I will keep you updated on any future appointments he has. The next one is August 12 with our family doctor for his physical for kindergarten.

Let's see...what else...Abbie got her hands on a pair of scissors the other day when no one was looking. I guess she was trying her luck at being a beautician and cut a big chunk of hair right off the front. This prompted two haircut appointments for the girls on Friday. Neither one of them had ever had a haircut before so this was a new experience. They did pretty well.

John turned 16 this past week too. Gosh - I can hardly believe it! We celebrated by spending about 3 hours at the DVM getting his driver's license. Everybody and their dog must have been there that day with license issues. It took forever! But it was worth it cause he passed on the first try. Way to go John! It's really hard for me to let him take off in a car all by himself. It just feels so weird! Some days I feel like I should still be 16 instead of a mom of a 16 year old! When did I become the grown up?

That's all I've got for now. I'm trying to get geared up for school which will start here in about 2 1/2 weeks. For the record, we will have 2 preschoolers, a kindergartener, an 8th grader and a sophomore. Hopefully everything will go smoothly. I will let the following pictures do the rest of my talking! Have a great week!

John on the Columbus Reds...Season record 21-7! Way to go guys!

Joey spent most of his time trying to escape out the door at clinic...

We would bring him back in and he would get the door open again and again...

Playing drums on the chair....very entertaining!

John by his hand me down car with his new floormats!!

Sweet sixteen! With his Oreo ice cream cake and 16 candles...

Getting some help blowing out the candles...

This is what prompted the haircut appointments...

Probably about 4 inches right off the top!

Abbie before haircut...

Abbie getting hair cut...

Abbie after haircut....

Emma before haircut...

Emma getting haircut....

Emma after haircut...

Aren't they adorable!!

Sixteen candles...

2009-07-29T09:00:00.002-05:00

Dear John,

Happy Birthday to my strong, handsome first born son. Today you are 16 years old and will be driving on your own. My goodness, where has the time gone? I wanted to take this time to tell you how much I love you and how proud I am of you. It seems just like yesterday when you were the baby we brought home from the hospital to be held and cuddled and loved. Now you are the oldest of 5 and the kids couldn't ask for a better big brother. You are a caring, compassionate person and are a great example for your younger brothers and sisters to look up to. You work hard and have the determination that will get you far in this world. I know things are crazy around here most of the time but don't ever forget that your dad and I love you very much no matter what happens. Keep your priorities straight and you will stay on the right path. You have so much to look forward to and we will always be here for you. In the meantime, keep up the good work. Happy Birthday Son! I love you!

Just rambling...

2009-07-21T21:01:00.002-05:00

Boy - I just realized that I don't think I have ever gone this long without doing an update on the blog. So I have decided just to ramble on a bit. As I write this, I am on a computer at a lovely place called Rainbow House. It is a wonderful place that provides lodging for families when their children are patients at Children's Hospital in Omaha. Don't worry - none of the children are sick. Shawn and I came down with Joey tonight to stay cause he gets to go to whats called the Children's Developmental Clinic at the hospital bright and early in the morning. It saves getting up at 5am and driving here. My sister graciously agreed to keep the girls over night for us and Tommie tagged along to her house too. Which means John, who will be 16 in a week, has the house all to himself. He has weightlifting and open gym for basketball in the morning that he needs to get to. You better be behaving yourself John! We have ways of finding things out you know! Anyway, Children's Developmental Clinic is something Joey participates in once a year. We get to go and sit in a small exam room for 5 or 6 hours while doctors and therapists and whoever else wants to comes in. They look him over and give their opinions about what else we should be doing. It's not as bad as it sounds - in the past it has been very helpful and I know they will be very pleased with his progress this year. I will let everyone know how it turns out. I brought Shawn along for reinforcements this time. It's always good to have back up in situations like this with Joey, especially when the appointment will go on for a few hours. There won't be a light switch in a ten mile radius that won't get flipped or a chair that won't get knocked over. Thank goodness there won't be any lamps around! Tonight for instance we had him in the playroom here and there was a nice woman in there with her grandaughter. Unfortunately this woman had a cup full of ice in her hand. Before we even knew what was happening Joey went over to her, grabbed that cup and ice went flying everywhere! He has the quickest hands west of the Mississippi! But in all fairness to Joey, the lady wasn't supposed to have drinks in there anyway. Other than that excitement, things have been pretty tame for us. The boys are both done with baseball now, the girls are usually up to something and Joey is doing well. We have a family reunion coming up this weekend. We have relatives that live in Minnesota so the relatives from here are meeting the relatives from there at a half way point for all at Sioux Falls, South Dakota. Doesn't everyone aspire to vacation in South Dakota or is it just me? (lol) It will be fun to see everyone again as it has been a long, long time. 5 kids, 1 hotel room, 2 nights - come back for all the insane details!

The day the fair came to town...

2009-07-14T13:14:00.006-05:00

There are two things that happen in the summertime that I am happy to participate in.... and ecstatic when they are over! lol One of them is the 4th of July and the other is the fair. As you know, the 4th is over. The fair came to town last week so that is another summer milestone that has passed. Where is the time going? John will turn 16 in two weeks, baseball season is winding down and soon we will be shopping for school supplies. (Don't tell the older boys I mentioned the dreaded "S" word!) We had a good time at the fair - 5 hours and $5000 later everybody was tired but happy. Okay, we didn't quite spend $5000 but it sure seemed like it! For example, a couple orders of chicken strips and two slushies for the girls only set us back $18! Don't even get me started on what Tommie paid for some Dippin' Dots! Gotta love those spiral spuds smothered in cheese! I would pay anything for those! John tried something new this year - fried Oreos. I kid you not. They fry anything these days. Unfortunately I didn't get to try one cause he was with his friends when he got them but he said they were really good. I will have to try those next year. Yeah, yeah I know - complain and then head back for more. Will I ever learn? lol The boys spent most of the time with their friends - it's uncool to be seen with the old folks you know. The girls had a blast - Emma wasn't afraid of anything this year. Tommie took her on the big ferris wheel while Abbie waited below crying her eyes out cause she was too short to go with them. She was able to get on the bumper cars with them so that made up for it. Joey tolerated everything pretty well. We had never had him on any rides until this year. He liked the merry-go-round but wouldn't sit on one of the horses so Shawn rode with him on a bench. We got him on some race cars and he wasn't too impressed with those but I think he had fun too. All in all, good times and great memories!

Joey and Daddy on the race cars...

The girls are in on the action too...

Ever seen an alligator roller coaster?

Tommie and Abbie coming down the big slide...

Emma went down by herself this year!

Good old Merry-go-Round!

Joey didn't want to sit on a horse...

so he settled for the bench...

Gotta ride the train!

Here chickie, chickie, chickie!

Got one!

Joey wasn't too impressed with the ducks...

No Emma - we are not bringing home another cat!

Round and round goes the swing...

Can't go to the fair without riding the bumper cars! Here's Tommie and Abbie...

Tanner took Emma...

Tommie and Emma are on here somewhere...she wasn't afraid of anything this year!

A much needed proclamation...

2009-07-09T15:57:00.002-05:00

My friend Staci over at Mi4boys recently posted a Bill of Rights for Parents of Kids with Special Needs. A friend of hers compiled this proclamation using suggestions from parents. I was really moved by this bill of rights and felt compelled to share it here also. It gives a strong voice to all of us who try our best every day to face the challenges of raising a child with disabilities. I hope anyone who reads this gets the feelings of inspiration, hope, comfort and support that I felt.

A Bill of Rights For Parents of Kids With Special Needs

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world

4th of July highlights...

2009-07-06T19:20:00.003-05:00

Make a Smilebox slideshow

We hope everyone had a safe and happy 4th of July! The pictures in the slide show are from our busy weekend. There are also some pictures of Joey riding Buttermilk last Wednesday. If you haven't checked out the video in the previous post of him walking, take a peek at it before you go. He is doing awesome and getting better everyday! Go Joey! We are so proud of him! On Friday night, we joined some friends to watch our local fireworks display. We had fun and it gave the kids a chance to run around. On Saturday, we went to my mom's house and had a grilling bonanza! We had so many different kinds of meat we could have ate for a week! I enjoyed a thick juicy ribeye grilled to perfection by my brother-in-law. Thanks man - it was delicious! The kids lit off their fireworks at dark (and before!) and we all had a good time. The boys suprised me with a huge firework they bought called "One Bad Mother". Bad meaning good I hope! lol They were pleased with themselves and that was our grand finale of the night. Sunday was spent relaxing a little (FYI - relaxing is usually impossible in our house!) and I took our 5 kids and my nephews Cooper and Tanner to the park. We even stopped at Dairy Queen for ice cream! Yeah - I'm not entirely sure they will let us back into the joint but it saved having the mess in our van!

How was your holiday weekend?

Joey's Walk...

2009-07-03T14:43:00.004-05:00

Good news! Joey has been taking a lot of steps on his own! He has been doing great at therapy and walking all over the place when he is there. We are all so proud of him! The little stinker won't walk much around home though - we think he likes bigger open spaces to take off in. We caught him on video showing off to the volunteers at SMILE on Wednesday when he went to ride Buttermilk. They were thrilled too! He is a little unsteady yet but all in all he is making great progress! We have waited a long, long time for this and it's a dream come true that the time is here! Enjoy the peek at his new moves - there will be lots more to come!

Thank you...

2009-07-02T18:03:00.004-05:00

First off, I would like to thank all of you for your comforting words and support these last few days. After all of the kind words, I feel I need to offer more of an explanation as to what happened. Yes, unfortunately I did suffer a miscarriage last weekend. I was about 8 1/2 weeks along and we were just getting ready to tell the happy news in the next couple of weeks. We had intended to try and keep what happened a private matter but I ended up losing quite a bit of blood, had two trips to the ER, a D&C and spent Sunday night in the hospital. It was quite an ordeal. This baby caught us by surprise but we were definitely excited! Physically I am doing a lot better but emotionally I am a complete wreck. I know it has only been a few days but I am having a hard time moving on. You just never know what a day will bring. I know it has been hard on Shawn too, but he has remained strong for my sake and together I know we will get through this. The older boys have been troopers and have really stepped up by helping with the little ones. I can't stop wondering why? We already have 5 children. Why send us another baby now only to have it taken away? What if this would have happened when I was pregnant with one of the other children and then we wouldn't have one of them either? I am afraid I will spend the rest of my life wondering what if? What would he/she have been like? Or he/she would have been this age or that age by now. I am scared about a lot of things that I wasn't scared of before. I told you my emotions are running rampant! I know a lot of people probably think that I wasn't very far along, it wasn't a baby yet, etc, etc. move on, get over it. But to us, it was a baby. It was already a huge part of our lives and we already loved him/her with all our hearts. And now it's gone. If you are wondering why I am sharing all of these intimate details of our life with you, I have found it is helping me a great deal by getting my feelings out there and not keeping them bottled up inside. We have found comfort and support from many different people and places and it warms my heart to know that you are all out there rooting for us. You are all helping pull us through this difficult time. And for that I thank you. For any of you that may be reading this and have been through a simliar situation, my heart goes out to you. You have my sympathy and I'm sorry this happened to you too. I would like to end this post with a poem a friend sent me on Facebook. I found it very moving and it will be an inspiration to me every time I read it. Something good will come out of this, I just know it. I just have to figure out what it is.

What Makes a Mother

I thought of you and closed my eyes
And prayed to God today.
I asked what makes a mother
And I know I heard him say.

A mother has a baby
This we know is true.
But God can you be a Mother
When your baby’s not with you?

Yes, you can He replied
With confidence in His voice.
I give many women babies
When they leave is not their choice

Some I send for a lifetime
And others for a day.
And some I send to feel your womb
But there’s no need to stay.

I just don’t understand this God
I want my baby here.
He took a breath and cleared His throat
And then I saw a tear.
I wish I could show you
What your child is doing today.
If you could see your child smile
With other children and say...

“We go to earth to learn our lessons
Of love and life and fear.
My Mommy loved me oh so much
I got to come straight here.

I feel so lucky to have a Mom
Who had so much love for me.
I learned my lesson very quickly
My Mommy set me free.

I miss my Mommy oh so much
But I visit her each day.
When she goes to sleep
On her pillow I lay.

I stroke her hair and kiss her cheek
And whisper in her ear.
Mommy don’t be sad today
I’m your baby and I’m here.”

So you see my dear sweet one
Your children are ok.
Your babies are here in My home
And this is where they’ll stay.

They’ll wait for you with Me
Until your lesson there is through.
And on the day that you come home
They’ll be at the gates for you.

So now you see what makes a Mother
It’s the feeling in your heart.
It’s the love you had so much of
Right from the very start.

Though some on Earth may not realize
Until their time is done.
They’ll be up here with me one day
and know you’re the best one.

I am sad...

2009-06-30T09:37:00.003-05:00

I am sad. Unfortunately, Shawn and I faced a personal loss this past weekend and have had a rough few days. Thanks honey for staying strong and all you've done with the kids and the housework while I try to get back on my feet. I also want to thank my sister for all her help - you are the best! I am on an emotional roller coaster right now and I am having a difficult time getting past all of this. I thought if I put some of my feelings in writing it would help me to heal. Thank you all for your support while I try to get back on track physically and emotionally.

You Are Loved...
A soft cry we'll never hear
A sweet smile we'll never see
Why did this happen?
How can this be?
No cheeks to caress
Or shower kisses upon
No tiny hands to hold
The dreams are all gone.
We won't know what you looked like
How big you would grow to be
Whose personality you may have
Hear you talk and laugh with glee
We won't have a chance to comfort you
And make everything alright
We won't get to take you to the park
Or watch you ride a bike.
Even though we couldn't meet
We love you with all our hearts
Before we got to be together
God chose for us to be apart.
He will take good care of you
Our angel up above
Our time was not meant to be right now
Just know that you are loved.

written by R Riedmiller 6/29/09

Got Buttermilk?

2009-06-24T19:42:00.003-05:00

Here is a short video of Joey on Buttermilk at his horseback riding session last week. He is doing a great job and gets so excited when we get there each week! I ask him if he's ready to ride the horsie and see Patty (the wonderful woman who runs the program) and he claps his hands and laughs with pure delight. It is an awesome sight to see!

Happy Father's Day Dad...

2009-06-21T12:55:00.002-05:00

Dear Dad,
I am writing this to wish you a Happy Father's Day. I think about you every day. Things have not been the same since you have been gone. Mom is doing okay but she misses you terribly. She is always talking about you and sharing memories. She isn't the same anymore either - none of us are. Andrea, Eric and I have been taking good care of her and I just wanted to let you know that. I keep busy taking care of the kids - their schedules are hectic but we manage. Baseball season will be over soon then things will slow down a little. Andrea has been off work for awhile - she had to have surgery for carpel tunnel syndrome and will go back soon. Eric started farming in the spring and really likes it. He and Sherry are building a new house soon. The grandkids are all fine - growing up way too fast. Since you have been gone, Tommie turned 13, Baby Aubree had her first birthday, Emma is 4 now, Joey is 5 and Abbie celebrated her 3rd birthday. Cooper will turn 2 soon and John will be 16 next month - can you believe it? We visit you often and mom chose a beautiful headstone for your new home. You would definately approve. I know you are watching over us and keeping us all safe. Rest in peace Dad. We love you and miss you.

Love, Rachelle

In loving memory of Richard Lawson September 30, 1939 - January 14, 2009

God Wouldn't Wait

We wanted to keep you longer
But God just wouldn't wait.
Is it supposed to make us stronger?
Will we ever have answers of your fate?
We knew the time would come some day
And no one ever knows when.
We can't waste time wondering
Or thinking of what might have been.
Dad, you were a special man
Unique- as some would say.
We loved your sense of humor
And your funny, quirky ways.
We know that you are healthy now,
Better than before.
God chose to end your suffering
You will be strong forever more.
For now please walk beside us,
Guide us on our way
Until God decides He just can't wait
And we meet again one day.

Joey of the jungle

2009-06-17T12:35:00.007-05:00

Well, Saturday and Sunday I had a chance to spend some quality time alone with John and the little ones. Shawn and Tommie were off to Sioux Falls, South Dakota for the weekend for a baseball tournament. Sioux Falls is about a 3 1/2 hour drive north of where we live in Nebraska. How did he end up taking only one child and I was left with four? That issue is still being debated. Anyway, we could have done whatever we wanted whenever we wanted too. Did we take it easy, hang out around home, maybe take a nap? No way. We traveled 65 miles out of town to watch John play baseball. Why would some thirty something mother decide to take a 5, 4 & 3 year old that far by herself? Is she crazy? Well, probably a little. Okay, a lot. She thought it would be fun and how hard could it be? It's not much different than being at the park - is it? She forgot that they are a handful at ball games when her husband is around to help out. That we need one person just to entertain Joey and keep him happy and one person to keep track of the girls and keep the concession stand in business. She learned her lesson, let me tell you. Thank goodness there was a park right by the ball field where we spent a majority of our time playing - and I tried to watch the baseball action through the cracks in the fence, strained my ears to hear the announcer and tryied to figure out which side was cheering the loudest and when. The kids didn't behave too badly, let's just say they were very energetic. That would be the best way to put it. Here are a few pics from our fun filled adventure!

Aren't they sweet? How much trouble could they be on a road trip?

Joey tore up the jungle gym - he loved it!

The girls kept busy...

A great shot of Abbie whining at the concession stand...

The only picture I managed to get of John...

Silverware conspiracy theory....

2009-06-15T18:14:00.004-05:00

I have entered some kind of silverware twilight zone. A land where pieces of silverware vanish - never to be seen or heard from again. It started several weeks ago with the spoons. They were the first to go. My teaspoons slowly but surely started disappearing. Now it seems the forks decided to get in on the act. Before you know it, the butter knives will think this looks like fun and start leaving me too. Followed by the tablespoons,the steak knives, spatulas and corn on the cob holders. My can opener already is never in the same place I know I left him in. This great abandonment by my tableware has me puzzled. I take good care of them - I clean them in the antibacterial cycle in the dishwasher so they don't obsess about germs. I put them away in their nice little separate compartments. Heck - they even have their own drawer - aptly titled the silverware drawer. What more can I do? Maybe they are getting angry with me because their neighbor, the junk drawer, has too many occupants already and the population grows daily. Maybe they don't like it when cute little sticky hands grab them by the neck and bang them on the table. Maybe I was a little too stern when I told the few remaining spoons that I would be forced to go to Walmart and buy some shiny new replacements for them if they didn't stop disappearing. I guess the forks over heard this and didn't like the sounds of my threats because shortly after that is when they started jumping ship with their spoon friends. I do have a personal theory. I think they are all at some every day silverware party - drinking, laughing at me, and dancing with all of our missing socks. In the meantime, I will patiently wait for their return.

Thursday 13 - Week 12 edition L

2009-06-12T18:52:00.005-05:00

Welcome back to my very own version of Thursday 13 - Friday style! We have had a hectic couple of days (so what else is new?) but for me the lateness of this post is bordering on Thursday 13 - Saturday Edition! I know I could do Friday 14 or Saturday 16 or Sunday 17 or something like that but I am going to stick with my commitment to myself and do these Thursday 13 posts until I reach the light at the end of the tunnel - the letter Z! (Also, 13 words that start with the same letter each week is enough for me - let alone 14, 15, or more! lol) I can't let myself get down dwelling on the reality of an alphabetical Thursday 13 promise - i.e., it's a commitment that might get me committed, there are some scary things out there like Q, W and X, and also the haunting thought that by the time I am done with these 26 posts, a half of year of my life will have passed by! Ok Rachelle - deep breath and on with the show!

1. Love - There can't be an L themed post without the best L word of all - Love!

2. Laughter - There is not a lot that is more sweeter sounding to my ears than the sound of a child's laughter!

3. Live - I might as well go for it - live, laugh, love as the saying goes!

4. Loops - Fruit Loops cereal is a favorite amongst the little ones around here!

5. Lottery - Who wouldn't love to win the lottery! I don't play much so I guess I can't complain that I haven't won! I get an occasional Powerball ticket when the pot gets big or a $1 scratch ticket here and there.

6. License - John will be getting his driver's license next month!

7. Laundry - We are never caught up! It is an endless chore in a household of 7 people!

8. Lamp - Joey sleeps with a small lamp on his his room. If we try to shut it off after he goes to sleep he wakes up so we just leave it on all night. Then we have to remove it as soon as he gets out of bed in the mornings or he will pull it right off the dresser.

9. Linebacker - John's position on the high school football team.

10. Lollipops - One or two lollipops on reserve in one's purse solves a lot of one's problems!

11. Labrador - We used to have a dog named Maggie who was a black lab/retriever mix. Unfortunately she passed away in 2004 from heart failure. She was a good old dog!

12. Learn - I am so amazed at all the new things Joey learns every day!

13. Lacustrine - The L word of the week. It means: of or relating to or living near lakes.

Thanks for joining in the L letter fun! Come back next Thursday (or Friday?!?) for massive mountains of M fun!

Pictures anyone?

2009-06-07T19:20:00.006-05:00

I just wanted to pass on some pictures of the last few days - the girls had their first trip to a circus, Joey got an elephant light, it was hot enough to have some outside water play time, my birthday came and went and Joey continues with his amazing food stacking skills. John hit another home run in Thursday nights baseball game and his team won again on Friday to bring their Legion team record to 8 wins no losses. Go Reds! Tommie was to have 2 baseball games in Grand Island Saturday but they were cancelled due to the 4+ inches of rain they had during the night. We got about 2 1/2 inches so everything is wet, wet, wet! Friday's temp was in the high 80's and the kids were running around in their swimsuits and today it barely reached 60 degrees. It is cool and gloomy outside today - in no way was it suitable for June! Joey has been doing really well - he seems to be fighting the gunky eye thing again but we already have the eye drops going so hopefully that will take care of it. I really don't want to put him through another tear duct probe. He has an appointment with his pediatric GI doc in July for a check up and goes to the Children's Developmental Clinic at Children's Hospital in Omaha the end of July. So right now his doctor schedule is pretty tame - knock on wood! This week John's got a couple baseball games and a tourney in Grand Island, Tommie's got a tourney in Sioux Falls this weekend, Joey's got therapy and horseback riding, the girls have their every day antics and Shawn and I will do our best to keep up with everything. Enjoy the pics!

Me, the girls and my Aunt Carol with the delicious coffee cake she made me for my birthday...

Joey and his souvenier elephant light we brought him from the circus...

What's a circus without cotton candy?

Hula Hoop lady...

The girls rode ponies at intermission...

This guy was just hanging around...

A singing pig...

These 2 did some kind of fast magic clothing changing act...

Tommie & Abbie watching all the action...

Tommie and Emma checking things out...

Emma in the shark pool Tommie bought for them...

Tommie has to get in on the fun too!

Shouldn't you always eat chocolate outside when it's 89 degrees?

I got some good shots of Abbie...

Emma and Abbie...

Emma napping with her kitties...

Joey showing off his food stacking skills - this time with boxed goods. Pay no attention to the kitchen floor that desperately needed mopped!

Thursday 13 - Week 11 Edition K

2009-06-04T19:23:00.003-05:00

This week I contemplated skipping my Thursday 13 post because I was fearful of the letter "K". I think it might prove to be a little difficult. But for my loyal Thursday 13 fans (and you know who you both are!) I decided to push my fears aside and give it my best shot. On with the party!

1. Kindergarten - Can you believe Joey will start Kindergarten in the fall? This August will actually be the beginning of our 3 year Kindergarten run - Joey in 2009, Emma in 2010, and Abbie in 2011. Then John will graduate from high school in 2012!

2. Krusty Krab - The home of many of Sponge Bob's adventures!

3. Kite - The last time I flew a kite was several years ago.

4. Kitten - We have had all 3 of our cats since they were kittens. Casey is 11 years and Reggie and Blackie are 2 years.

5. King - Shawn thinks he is the king of the castle. But we all know who is really in charge around here. It's Emma.

6. Kids - We have 5!

7. Kentucky - I've never been but I would love to visit someday!

8. Kmart - We don't have one in the town we live in. All we have is a good old Super Walmart. The closest Kmart is probably 60 miles away.

9. Kisses - I could smother my kids' cheeks with kisses all day long if they would let me!

10. Kiwi - Abbie just came up to me with her watermelon pj's on and the word kiwi popped into my head. Personally I don't eat kiwi but I'm sure there are some fans of it out there in blogland!

11. Koala - We have seen these cute little bears at the zoo!

12. Kitchen - Someday I would love to remodel my kitchen!

13. Kitembilla - This is our random K word this week. It is a maroon-purple gooseberry-like fruit of India having tart-sweet purple pulp used especially for preserves; small shrubby spiny tree cultivated for its maroon-purple fruit with sweet purple pulp tasking like gooseberries; Sri Lanka and India

Hope you enjoyed my little corner of the alphabet this week! Come back next week for loads of L word fun!

What would your answer be?

2009-06-03T13:36:00.003-05:00

Question:
"When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Joey, cannot learn things as other children do. Where is the natural order of things in my son?"

My answer:
Acceptance in today's society is what many people strive for. Whether it be in social situations, your workplace, your school or even within your own family, acceptance usually makes us feel better in one way or another. Most people want to be considered "normal" or "typical" and get uncomfortable when they fear society may look at them in a different way. In our world, acceptance has taken on a whole new meaning. Since our son, Joey, was born in 2004 with a rare genetic condition called Cornelia de Lange Syndrome, we have had to gain acceptance into many new and different social circles. The circles we have been introduced into are circles that the majority of people will go a lifetime without having to know anything about. The hardest thing I have ever had to learn to accept is the fact that I have a child with a disability. Do any of us plan for this? No. We want to be just like everybody else. A normal baby, normal doctor's visits, normal feedings, normal schedule, normal looks from people when we are out in public with our children. Do I think it is fair that my son has to work so damn hard every single day of his life? No. But I do feel that it has made all of us stronger and better people to have been accepted into Joey's world. It is the most important and highest status I will ever gain and I am so proud to wear this badge of acceptance.

So where is the natural, normal order of things for my son? Is it in the doctor's visits, the specialist appointments, the tests, the procedures, the schools, the therapies? Or is it in the joy, the love, the laughter, the sweet moments and all the precious, unbelievable gifts Joey gives and receives every day? Our natural order is wrapped up in all of these things. Joey may not learn and grow as other children do but that's okay. He does things in his own way and in his own time with his own flair. And that order is just fine with me.

What would your answer be?

Thursday 13 - Week 10 Edition "J"

2009-05-28T16:23:00.007-05:00

Hopefully I get my J post done in a timely fashion - today John had weightlifting, basketball camp and a baseball game tonight. Tommie had basketball camp today too and baseball practice tonight. Joey has PT and OT on Thursdays. If you throw in all the mischief the girls cause, it makes for a truly interesting day. John is getting ready for the game right now, Tommie is trying to keep Joey entertained while I am on the computer, the girls are for some reason being halfway behaved right now working on a princess puzzle and Shawn is at the grocery store. So I better get this ball rolling while I have the chance!

1. Jumping - I will clarify what the girls are doing. They have a foam princess floor puzzle that has large pieces to it. They have it put together in a line on the floor and are jumping on it. It's their own version of hopscotch I guess!

2. Joey - Our 5 year old son who was born with Cornelia de Lange Syndrome.

3. John - Our 15 year old son who will be 16 in 2 months and really, really, really thinks he needs a car for his birthday. Good luck with that one!

4. Jockey - With Joey's small stature and horseback riding experience the boys think he will have a shot at being a jockey someday. Maybe he has a future at the Kentucky Derby!

5. Jelly - Jelly filled donuts rock!

6. Jewelry - I don't wear much jewelry. My wedding ring and an occasional pair of earrings. Too many little hands around to pull on stuff!

7. Junk mail - We get a lot of it!

8. Joke - I will tell you one of my favorite jokes. The boys used to say it when they were little and now we have the girls saying it too. It is so silly it is funny!
Question: Why did the coach go to the bank?
Answer: To get his quarterback!

9. Journey - One of the great bands from the 80's!

10. Joy - "Do not grieve, for the joy of the Lord is your strength." Nehemiah 8:10

11. Jack-in-the-Box - Everybody's heard of a Jack-in-the-Box right? How about a Joey-in-the-Box?

That's him under there I swear!

12. Jasmine - One of the princesses the girls love! She was the one in Aladdin.

13. Jactitation - Our J word to increase our vocabulary. It means a tossing, twitching or jerking of the body; a false claim.

For more Thursday 13 fun, check out Alisha over at Izzy 'n Emmy. She is up to letter U this week! Come back next week and check out all the kindness around here! We will be exploring with the letter K!

A big step in the parenting department...

2009-05-26T14:27:00.007-05:00

We took a big step in the parenting department this weekend. Not only did we decide to leave John overnight by himself for the first time, we also left him in charge of Joey. Crazy? Possibly. Between the 7 of us were we in 3 different towns Saturday night? Yes. At our wits end about what to do about our hectic weekend schedule? Definately. So we decided to split up. Tommie had a baseball tournament out of town all weekend, we had already planned to have a birthday party for Abbie on Sunday, and last Thursday we realized that John had a double header on Sunday. So Shawn had to stay with Tommie and I had already promised my mom the girls and I would spend the night at her house on Saturday cause we were having Abbie's birthday party there on Sunday. Have I lost you yet? Well, it would have been to hard for me to take the 3 little ones to my mom's for an overnighter by myself and John needed to stay in town for his baseball games. So the girls and I stayed at Grandma's, Shawn and Tommie stayed in Council Bluffs, and John and Joey stayed home. Shawn came home Sunday morning in time for John to get to his games which he and Joey were going to watch. Then we find out they were moved back to 4 & 6 p.m. because it had rained during the night. So Shawn, John & Joey are now at home, Tommie is still in Council Bluffs and the girls and I are still in Albion. Are you with me? Then we find later out that John's games got cancelled completely cause the fields were still to muddy. So Shawn missed Abbie's party and Tommie's games on Sunday to go to John's games which ended up being cancelled. The good news is John took good care of Joey during all the confusion. He was in one piece and the house was still standing when Shawn got home. My sister and my nephew came over and spent some time with them Saturday evening - of course not spying or anything and we in no way asked her to check on them - and they were doing fine. Next time we told him we will leave him in charge of all of them! lol - He declined that offer!

Let's throw our princesses off the deck!

Abbie found my glasses!

Abbie and her birthday cake...

Opening presents...

Emma had to help of course!

It's my party...

and I'll have 4 pony tails if I want to!

Is there any other way to swing?

Lunch in the park...

Joey liked to push the merry go round...

Tommie had 3 swings going at once!

John got hit in the back by a pitch in a game last Thursday...you can see the ball on the ground

John plays catcher...this kid struck out

Happy #3 Abbie!

2009-05-24T18:20:00.002-05:00

Our beautiful baby Abbie turns 3 years old today. She is kind and loving and gives out the sweetest kisses you will ever have. Happy Birthday Sweet Bug - we love you!

Thursday 13 - Week 9 Letter "I"

2009-05-21T14:07:00.007-05:00

Welcome to another fun filled week of Thursday 13! This week we are up to the letter "I". What ingenious ideas did I come up with? Well, let's check it out!

1. Idol - Congrats to the newly crowned American Idol Kris Allen! I was rooting for him but figured Adam would have won the title. I would be interested to know how many votes separated the two of them. I am challenging myself to see if I can name the previous 7 winners. Let's see...Kelly Clarkson, Rueben Studdard, Carrie Underwood, Fantasia, Jordan Sparks, David Cook and....jeez! Who is the other one? Don't worry - it will come to me.

2. Internet - Where would we all be if not for the internet? 20 some years ago we never would have dreamed of all the things we could do and the people we could connect with.

3. Imagine- Imagine if you will...
A 3 year old girl having a HUGE temper tantrum because her mom won't let her flood the bathroom with water.
A 4 year old girl also having a temper tantrum for the same reason. But she gives up and decides to make a bed for the cats in Joey's crib using every single blanket and pillow in the house.
A 5 year old boy standing up to the kitchen counter, reaching a big glass of Mountain Dew with ice and throwing it on the floor. He proceeds to splash and slurp until someone discovers what he has done.
A 13 year old boy who can't find a pair of clean socks in the whole house and finds it necessary to complain about this. He also wants a ride to a friends house. And complaining because it was his Mountain Dew a certain 5 year old is now taking a bath in.
A 15 year old boy who decides to be oblivious to all the activity by watching videos on YouTube. He decides to get in on all the action to ask where his baseball pants are. Complains they are still wet in the washer and what's he supposed to wear. Also needs a ride to practice.
Imagine it? I lived it! And that was just during the first hour of summer break yesterday!

4. IEP - Stands for Individualized Education Plan. We have 2 meetings a year unless there is reason for more. It is made up of us (parents), Joey's teachers, and other people on his team are his therapists from the school system. It sounds intimidating but really it's not. So far we have had good meetings.

5. Ice - I am a chronic ice chewer. I hardly ever go anywhere without a glass of ice water or a pop with ice.

6. Irritate - I know the above mentioned habit irritates a lot of people. I don't do it in public as a common courtesy to others. Aren't I super nice?

7. Insanity - The word that pretty much sums up the activity in our daily lives.

8. Information - You can get so much information about Cornelia de Lange Syndrome by clicking here.

9. Image - I wanted to share an image I took of the gift bags we made for Joey and Emma's teachers. Their end of the year thank you gifts were filled with candy, a card and a small gift certificate to a convenience store that is close to the school.

10. Impossible - Our daily schedules sometimes seem impossible to figure out. But we manage day by day!

11. Illinois - The site of last year's CdLS Conference. We can't hardly wait for Dallas in 2010!

12. Innings - Something we will see a lot of this summer.
Taylor Hicks! I just thought of his name! Yay for me!

13. Ionosphere - This is our random I word for the week. It is defined as: The part of the earth's atmosphere beginning at an altitude of about 50 kilometers (31 miles) and extending outward 500 kilometers (310 miles) or more.

We hope everyone has a safe and happy Memorial Day weekend! Our forecast calls for rain so that is a great kick off to the first official weekend of summer! Tommie has a 3 day baseball tourney in Council Bluffs, John has a double header for his legion team on Sunday and just for the heck of it Abbie turns 3 this weekend too. Will we get it all in? I sure hope so! Come back next week for some joyous joviality with the letter J!

Toys? I don't need no stinkin' toys!!

2009-05-20T08:34:00.005-05:00

For more WW fun, visit 5 Minutes for Special Needs and 5 Minutes for Mom.

Rachelle makes a fashion statement!

2009-05-17T20:42:00.005-05:00

Have you ever spent 8 straight hours at a baseball field on a Sunday? How about with the wind blowing about 25-30 mph? Getting dirt in your hair and mouth? Or ending up with sunburned lips? Let me tell you I sure have! But is was all worth it because the club baseball team Tommie plays for won the championship game today in a big tournament that is held in our town every year. Congrats to the Mariner 13's! The tourney started Friday and they battled their way through the bracket to a gold medal. All the kids did a great job! The parents all take turns helping out in different areas during the tournament. Shawn helped out on the field crew and I got to put in some time as a site director. I looked pretty official in my orange vest! John helped out with some babysitting so the little ones didn't have to spend as much time at the ball field as there was the potential for. Thanks John - your paycheck is in the mail!

Making my fashion statement...

Shawn hard at work on the field...

The girls had about 30 ring pops...

Just kidding! Only about 25!

Joey loved the dirt as you can see...if only he didn't want to eat some of it!

He found a baseball in the grass...

Needless to say they all got baths when we got home!

I tried to get a good pic of Tommie - he hit a double off this at bat!

Waiting for a victory!

Tommie sporting his medal...

Some celebrating!

Here's a couple team pics...Great job fellas!

Thursday 13 - Week 8 Edition "H"

2009-05-14T11:51:00.009-05:00

After a brief hiatus last week to share a post about CdLS Awareness, Thursday 13 is getting back on track. 2 weeks ago we finished off our journey into the world of the letter G. This week, we will explore H and all of it's happenings. Jeez, listen to me...I sound like I am teaching a world history class or something! lol That's okay because this week there will be a pop quiz at the end of the post. (just kidding!) But I am planning a vocabulary test about our words of the week at the end of our 26 weeks together so you better start cramming! lol

1. Heart ~ I can't have an H post without mentioning one of my favorite bands from the 80's, Heart. Yes, I am an 80's music lover. Is there any other kind? Nobody can wail like Ann Wilson!

2. Hyvee ~ My favorite place to get groceries. We have one about 4 blocks from our house so it is very convenient too.

3. Hairspray ~ For this one I am totally going to blame the kids. Earlier this week, I was in the bathroom fixing my hair. In my bathroom there is a can of White Rain Hairspray and a can of Febreeze air freshener. They were right next to each other on the counter. Emma and Abbie started fighting about something and in my haste to finish my hair and find out what was going on, I sprayed Febreeze on my hair instead of hairspray. I am not kidding. All day I smelled like a meadow kissed with fresh morning rain.

4. Home ~ Joey's favorite place to be is home. He loves to go to school and therapy and he is also a champion shopper and ball game watcher. But boy does he get excited when he gets home!

5. Hectic ~ A good word that describes our daily life!

6. Horse ~ Joey started his 3rd season of horseback riding therapy yesterday. He seemed to remember a lot of things but was a little fussy during the ride. It was kind of windy though and he hates the wind. After 1 or 2 more sessions he should be back in the groove! These were taken yesterday:

7. Hot ~ What the weather will be here soon. I asked my husband for a good H word and this is what he came up with. Clever, isn't he??

8. Humor ~ I feel a good sense of humor is a great characteristic for a person to have. I always try to look at the lighter side of things. This comes in handy when the girls have flooded the bathroom. Or when Joey has pulled every single canned good out of the cupboard. Or John & Tommie are needing a ride somewhere for the 10th time in one day. Turn that frown upside down ~ right?!?

9. Hands ~ One of the characteristics of CdLS is small hands. They are some of the cutest hands I've ever seen!

10. Heights ~ I am afraid of heights. I will climb a ladder about half way then forget it.

11. Hannah Montana ~ The last movie I saw. I went with the girls so that makes it okay.

12. Horatio ~ Shawn's favorite character on the TV show CSI:Miami. Horatio is played by David Caruso. Shawn has followed him since his NYPD Blue days. He thinks he's cool.

13. Halogeton ~ Our H word. It is a coarse annual herb introduced into North America from Siberia; dangerous to sheep and cattle on western rangelands because of its high oxalate content.

Come back next week for instant fun with the infamous letter I!

Sharing a SMILE...

2009-05-12T17:56:00.003-05:00

Meet our little cowboy Joey. Ain't he cute?

I made these cards for Joey's birthday this year. For the second year in a row in lieu of a party and presents we asked family and friends to make a donation to SMILE in honor of Joey's 5th Birthday. SMILE is the name of the wonderful program where Joey participates in horseback riding therapy. The inside of the cards look like this:

Because of the generosity of our family and close friends, we were able to raise almost $250 to donate to SMILE this year. Thank you everybody ~ that is awesome! You can be very proud of yourselves! On Wednesday, Joey begins his 3rd season of equine therapy. We are so excited! He has really come to enjoy his sessions and it helps him gain strength and balance. Every week from now til October, we are off to ride Sparky! I encourage everyone to find out if you have an equine therapy program in your area. It will do wonders for your child and he or she will have fun at the same time!

Here are some pictures I threw in from his final session last October...

CHECK THIS OUT!

2009-05-11T11:13:00.002-05:00

Our family was featured in an article yesterday in our local newspaper, The Columbus Telegram. You can check it out by clicking here. It was great to be interviewed and we are grateful for the awesome opportunity to help spread awareness about Cornelia de Lange Syndrome. The kids even sat still for the picture! Leave us a comment and let us know what you think!

What CdLS means to me...

2009-05-09T18:28:00.005-05:00

CDLS. Simple letters that don't mean much to some people. Up until 5 years ago, they didn't hold much meaning for me either. Now, these four letters carry a great big meaning for me and my family and other families we have come to know and care about. Cornelia de Lange Syndrome. Quite a mouthful isn't it? CDLS. Scary letters? Sure. Letters that hold the key to a life of unknown obstacles? You bet. But I have learned that these letters also hold a very special meaning. These letters have taught me a lot. And these letters have led me to a life that I feel very blessed to be a part of. C stands for Courage. I have found within myself a courage that I never knew existed. Courage to stand up and face the unknown. Courage to acknowledge that I have a child with a disability. The courage to help him any way I can. I am proud to have in my life one of the most courageous people I know ~ my son Joey. He faces so many challenges every single day and tries his best to triumph over all of them. D stands for Determination. I am determined to learn everything I can about Cornelia de Lange Syndrome. I am determined that Joey will have the best opportunities that can be made available to him. I am also determined to raise awareness about CdLS whenever I can. You never know when you might reach that one child and that one family that may be missing out on getting the help they need. L stands for Love. The love that surrounds Joey and our family is indescribable. His disability has pulled us together and he has taught us a huge lesson about unconditional love. He loves us. We love him. Sometimes thats all we need to remember to get us through the rough spots. S stands for Support. I don't know what I would do if I didn't have the the strong support network of other CdLS friends and families. It really helps to know we are not alone in facing the struggles of raising a child with CdLS. We lean on each other. We share our joys and our sorrows. I encourage any one out there that has a child with a disability to seek help and get the support you need. You will be so glad you did.

Today is also a special day for our family. It marks the 20th anniversary of Cornelia de Lange Syndrome Awareness Day. We are so grateful to have the CdLS Foundation and all of its staff who work tirelessly every day to help better the lives of our special children. To learn more about CdLS and the Foundation, click here. If you would like to read Joey's story, click here. And please take a few moments to visit our CdLS Family blogroll. You will meet some of the most amazing kids ever. Their pictures and stories will touch your hearts as they have ours. Happy CdLS Awareness Day!

Heidi is having a CdLS Awareness Contest!

2009-05-08T13:29:00.003-05:00

I would like to introduce you to Blue. Like Joey, he was born with Cornelia de Lange Syndrome.

Isn't he adorable? Blue's mom Heidi over at God's Grace in Practice is hosting a CdLS Awareness Day contest. In an effort to raise awareness about CdLS, Heidi is encouraging all fellow bloggers to do a post about CdLS whether you have a child with CdLS or not. And guess what? There is even going to be a prize!! How great is that?!? Click here for all the details on how to enter the contest. Saturday, May 9 is the 20th Anniversary of CdLS Awareness Day. Won't you help all of us spread the word about Cornelia de Lange Syndrome and possibly help a child and their family get the help they need? Please visit my CdLS family blog roll for more posts about Awareness Day. And as always, please check out the CdLS Foundation for information about this rare genetic syndrome. Thank you.

Sharing some CdLS Awareness...

2009-05-07T15:43:00.006-05:00

Today I have decided to postpone my Thursday 13 edition H post until next week in favor of sharing some CdLS Awareness Day projects we have been working on this week.
Saturday, May 9 is Cornelia de Lange Syndrome Awareness Day. This year marks the 20th anniversary of CdLS Day ~ how great is that! We are so lucky to have a Foundation that works so hard on behalf of all the children and families that are affected by CdLS. I have been an awareness coordinator for the past couple of years and I thought this would be a great opportunity to share some ideas for raising awareness in your own community. In the past, my family and I have set up an awareness table at John and Tommie's baseball tournament, participated in Proclamation signings at our state capitol and made Awareness Day baskets. This week we made an Awareness Day "Bubble Basket" to share at Joey's therapy facility. I bought inexpensive small bottles of bubbles at Walmart, made some stickers on our computer, stuck them on the bottles and put them in a basket. I also included some CdLS brochures and CdLS tattoos. Wiggles & Giggles is displaying the basket in their waiting area and pass them out to the kiddos that come in for sessions. Thanks so much for doing this ladies ~ we appreciate your help!

The Bubble Basket...

The Bubbles...

A couple other things we made this week are some "goodie bags" for Joey's therapists, teachers and classmates. For the bags for the grown-ups, I got some clear bags and made a CdLS label for some candy bars. We put in CdLS pencils, sticky notes, bookmarks, and luggage tags. For the kids' bags, we put in CdLS stickers, tattoos, bookmarks, purple balloons, bubbles and a sucker. We tied each bag with ribbon. You can get bookmarks, pencils, stickers, etc. through the CdLS Foundation.

Teachers/therapists goodie bags...

Kid friendly goodie bags...

Candy bar label (we taped it to Hershey's Chocolate Bars)...

Feel free to try these ideas if you would like. They are simple and inexpensive and a great way to spread awareness about CdLS. You never know when you might reach someone that needs the help of the CdLS Foundation!
Shawn and the girls are at the ball field watching John's game, Tommie is off to baseball practice, and Joey and I are off to Kindergarten Round-Up! Yeah I know ~ Kindergarten! It does not seem possible! Don't tell the burglars no one is home! Have a Happy CdLS Awareness Day!

Our 1 year Blogoversary!

2009-05-05T20:36:00.002-05:00

According to my little blogoversary ticker down towards the bottom of our blog, May 6 marks the one year anniversary of us entering into the wonderful world of blogging! Happy Day! I started this blog to help raise awareness about Cornelia de Lange Syndrome and also to keep our family and friends up to date on our busy lives. I have thoroughly enjoyed meeting and getting to know all of you and I appreciate all the support we get and all of the kind comments. This blog has been such a blessing and is a constant reminder that we are not alone in our daily challenges of raising a child with CdLS. Thank you so much! As your reward, I went back in the archives and pasted in a couple of blog posts from one year ago. Enjoy!

Tuesday, May 6, 2008
Survived

We have survived another hectic weekend in the Riedmiller household! John's Mariner's baseball team went 2-0 in a double header in Lincoln on Saturday. Tommie's Mariner's team went 1-4 in a tournamnet in Omaha played on Saturday and Sunday. They will spend this week getting ready for the Mariner's tourney here in Columbus May 9-11. Shawn had the little ones at the park late Sunday afternoon, and Joey climbed up the play equipment and proceeded to go down the big tornado slide all by himself! He wasn't scared a bit! Yea Joey!
On Monday evening, Shawn and I attended the 8th grade Honor's night at CMS. John received a Presidential Award for Academic Excellence. We left Tommie home in charge of the little ones and he got along good with them (no phone calls any way!). We hope everyone has a great week!

Thursday, May 8, 2008
Governor Heineman, John (& Joey's picture) & Rachelle

John and I traveled to Lincoln on Wednesday, May 7, to receive a signed proclamation from Govoernor Heineman recognizing Saturday, May 10 as Nebraska Cornelia de Lange Syndrome Awareness Day. We decided not to take Joey as he has preschool class on Wednesdays, and we did not want him to miss attending as he only has yesterday and next Wednesday, May 14th left before school is out for the summer. We took his picture that John held up during the short ceremony. It was a great experience, and I am always excited to spread awareness about CdLS.
by Rachelle 2 comments

messing around with my new phone

2009-05-04T22:29:00.000-05:00

I am attempting to do a post from my new phone. So technically this really isnt a post about anything its just me fooling around. I am anxious to check the computer in the morning & see if it worked cause now i am off to dream land! Nitey nite!

Thursday 13 ~ Week 7 Edition G

2009-04-30T16:52:00.005-05:00

Welcome back to Thursday 13 alphabetical style! I am not going to jinx myself again by saying that I am getting the post started at a reasonable time and should get it posted on Thursday. The last couple times I did that it was Friday before I got it done. But right now the girls are playing at the open window by our computer desk. They have their little princesses lined up on the ledge with Scooby fruit snacks yelling hi at our neighbor Willard as he mows his lawn. Joey is pulling on my pants leg ~ his way of saying "Mom, get off that computer and play with me!" And one of the cats has sprawled himself across the top of the desk. Prognosis of an actual Thursday 13 post getting out on a Thursday? Not good.

1. Goals ~ Joey's therapists and teachers set lots of goals for him. I am happy to say he meets and exceeds them all the time! Yay for Joe!

2. Giggle ~ The sound of a child's giggle just warms my heart. I am partial to a certain 5 giggles, but any child laughing is a wonderful sound.

3. Golf ~ Shawn used to be an avid golfer. Note I said used to be. No more time for that these days!

4. Grass ~ I love the smell of fresh cut grass. I actually don't mind mowing the lawn - just don't tell my hubby!

5. Glasses ~ John and Tommie wear glasses. I recently got my first pair ever a few weeks ago. It is so nice to see without squinting!

6. Grateful ~ I am eternally grateful for the many blessings in my life.

7. Garage Sales ~ Love 'em. I try to go whenever I get a chance. About 2 or 3 years ago, Shawn told me to take up a hobby or an activity to get out of the house. The result? Garage sales. Now he tells me I need to stop going and have one of my own. Let me see..hmmmmmm..NO!

8. Good Night Moon ~ One of our favorite books!

9. Grapes ~ A favorite amongst the kiddos! ( And me too!)

10. Gorillas ~ A must see when we go to the zoo. They can be so funny and interesting to watch.

11. General ~ Does John call me Mom, Mother or Mommy? No. He calls me General. (Affectionately, of course!)

12. Grill ~ We love to grill out when the weather is nice. Makes for easy clean up!

13. Gadolinium ~ The G word of the week. It is defined as 1. a ductile silvery-white ductile ferromagnetic trivalent metallic element of the rare earth group 2. A supposed rare metallic element, with a characteristic spectrum, found associated with yttrium and other rare metals. Its individuality and properties have not yet been determined.

Come back next week for some hair raising havoc with the letter H!

A day at Coco Key

2009-04-28T11:46:00.012-05:00

Whew! What a weekend! Tommie recovering from his bout with bronchitis. Worrying that everybody else is gonna get it. Cold, rainy weather. Hit a couple garage sales. Out of town baseball games. Traveling. Getting lost. Freezing my behind off. Locking the keys in the car. Paying someone to get them out. And that was just Saturday! I kid you not ~ it was like 90 degrees here last Thursday and on Saturday, it was 35 degrees, rainy, a little windy and just downright miserable! And was I home baking cookies and slurping homemade soup? No! I was at John's baseball games communing with Mother Nature! Not that I am capable of baking cookies and/or making homemade soup but still I would have been where it was warm! Saturday was not my day! Shawn sure knew what he was doing when he sent me off to John's doubleheader in Lincoln ~ he volunteered to stay home with the kids and off I went. I will mention here that he told me slightly misleading directions to the ball field (he blames Map Quest ~ I blame him) and I ended up at a track meet before I found the game. That was just the beginning. Up the road from the field is a pizza joint that the parents got together and ordered pizza from for the boys between games. Do they deliver? Of course not! Me, being the kind soul that I am ~ and nothing to do with being able to warm up in the car ~ volunteered to go get it. I got back, parked by the bus, the players came for the pizza and inhaled it in like 2 seconds. I am not kidding ~ I'm not sure they even tasted it. So I go to get back in the car and I can't. Driver's door is locked. Passenger door is locked. Back doors ~ locked. Did I mention I had left the car running too? By this time, most people had gone back to the field (it was quite aways from the parking lot). Luckily, one of the coaches was around and he had a business card for a guy that can unlock vehicles. So I call. And I wait. Let's just say when the guy got there he had the door unlocked faster than I can blink. The good part was he only charged $20. Thank goodness for that! I think I was finally warmed up on Monday. No joke. I was chilled to the bone. The things we do for our kids!

Sunday was a much better day. It was Joey's 5th birthday! It's hard to believe that our little man is 5! We didn't have a party for him ~ for the second year in a row we have taken donations from friends and family in his honor to donate to S.M.I.L.E. ~ the place where he does his horseback riding. I will do a post about that in a few days and let you get a peek at our little cowboy. A friend of ours has a daughter named Madison who also turns 5 in April. Joey was born on the 26th, and Madison was born on the 28th. We were actually in the hospital at the same time! I used to babysit Madison before they moved to Omaha last fall. We have been friends with their family for years because I actually used to babysit Madison's mom and her mom's brother when they were younger. Confused yet? Anyway, Madison's birthday party was in Omaha Sunday at an indoor water park resort called Coco Key. It was a blast! The place is really great and everybody had a lot of fun. Madison and Kendra (her mom) cut a piece of her birthday cake for Joey to have a candle in for his birthday too. It was so sweet! A grand time was had by all. It was a wonderful day. Enjoy the pictures! WARNING: There is a lot of them! :o)

Emma ~ down the yellow slide!

Joey ~ swimming with the fishies?

They're gonna get wetter!

Splish splash!

Tommie coming to the end of a big slide!

Dad & Joe taking it all in!

Too much excitement for Abbie ~ she fell asleep!

Shawn had to go play ~ so Joey and I took over Abbie duty...

Emma ~ taking a Dippin Dots break...

It wouldn't be a party if there wasn't a pic of someone eating!

Abbie, Diane & Coco....

Joey with some cake...

Madison gives Joey a little help with the candle blowing....

Joey ~ 5 on April 26 and Madison ~ 5 on April 28...

The whole party crew...

Trying their hand at a duck game...

Basketball...

Joey loved this game ~ probably because he got to through things! lol

Happy Birthday Joey....

2009-04-24T20:29:00.006-05:00

Five years ago today, a beautiful baby boy entered our lives. We named him Joey. We took him home, loved him, fed him, changed him, bathed him and cared for him with all our hearts. We also began to learn all we could about something we had never heard of before ~ Cornelia de Lange Syndrome. Joey, you have endured countless blood tests, scans, ultrasounds, doctor appointments, surgeries, procedures, pokes, prods, exams and therapies. And you have emerged triumphant. We are so proud that you are our son, brother, nephew, cousin and grandson. You have learned so much and taught all of us so much more. Thank you God for letting us see a side of life that we might not otherwise have known. It is a beautiful life, full of many rewards and blessings. Happy Birthday dear, dear Joey.

This one's for you Pookie...with love from Mommy...

Love Will Surround You

He may never say he loves you
But you know what's in his heart
From the moment his eyes found you
It was love right from the start.
The joys that he will bring
Will be more than just a few
His kiss, his laugh, his sweet, sweet smile
His emotions will be true.
God has chosen to give you
The best gift you will ever receive
The path may seem hard right now
But in Him you must believe.
The happy times and good memories
Will far outweigh the bad
The wondrous pride and love you'll feel
Will keep you from being sad.
Seek comfort and support
These things you'll surely need
Show your strength, love and joy
To curious passers-by pay no heed.
The love that will surround you
Will be more than you've ever known
Love this baby as much as you can
Because now you are truly home.

Getting ready to come home...

Tommie and Joey...

Our beautiful baby boy...

John and Joey...

He loved his bouncy seat...

Joey and I at his baby shower when he was about 2 weeks old...

His newest picture...where has the time gone?

Thursday 13 ~ Week 6 Edition F ~ On Friday again!

2009-04-23T19:51:00.004-05:00

Well, here we are with F! I can't get around the fact that this is already the 6th week of my Thursday 13 posts! We have had another hectic day around here so hopefully will get the post out before midnight! Tommie was home sick from school today. He has had a persistant cough the last few days and not feeling 100 percent. I took him to the doctor and good thing I did because he has bronchitis and got put on an antibiotic. So we will have to see if this makes the rounds to everyone or not. Abbie was already fighting a cold last week so there must be some germs floating around somewhere. I am armed with my can of Lysol and Clorox wipes at all times! I figure I am going to struggle a little with our friend F but will give it my best shot. And you know what usually happens to me in the day or two after my alphabetical Thursday 13's? I think of so many other great words I could have used!

1. Fundoplication ~ Joey had this surgery in January 2008 to help with his constant reflux problems. It worked! He went from taking 3 meds per day and vomiting every other night to hardly any problems now and only 1 med every other day. WhoooHoooo!

2. Friday ~ My favorite day of the week next to Saturday. Although sometimes I am really glad when Monday comes around again. Also it is the day I am putting out this week's Thursday 13 even though I had good intentions and started it yesterday. :o)

3. Foundation ~ I am continually grateful for the CdLS Foundation and all the hard work they do helping our kiddos every day.

4. Forensic Files ~ One of my favorite shows. It's on the TruTV network. It's mostly re-runs but I enjoy the mysteries and how they solve the crimes. Maybe I should have been a CSI. ;o)

5. Favorite ~ I've used it twice already in this post and realized hey ~ I can use that for an F word! One of Joey's favorite things to do is play his pianos.

6. Friends ~ I am very thankful for all the friends we have made through our journey with Joey and Cornelia de Lange Syndrome.

7. French toast ~ A winner around our house!

8. Fast ~ Joey does this cute knee walking thing and man oh man is he fast! When he walks I think he will be really speedy!

9. Fourth of July ~ Sorry to all you fans of the fourth out there but this is my least favorite holiday.

10. Four ~ The current ages of Joey and Emma. Emma turned 4 on March 14 and Joey is 4 (until Sunday and the big 5!). We have a 6 week span between their birthdays where they are the same age for awhile.

11. Five ~ The number of children we have. Hey ~ F isn't turning out to be as hard as I thought!

12. Farm ~ I grew up on a farm. My dad was farmer and I've layed many an irrigation pipe, drove many tractors, and fed many cows.

13. Fanion ~ Our random F word for this week. By definition, fanion is a small flag used by surveyors or soldiers to mark a position &/or a small flag sometimes carried at the head of the baggage of a brigade.

This has been fantastically fun! Come around next week for our grand get-together with G!

Busy, busy weekend...And we met another CdLS Mom!

2009-04-22T09:15:00.010-05:00

What a weekend! It is already Wednesday and I am still recovering! Monday and Tuesday were outrageously busy for me too but I don't dare get into all that! Let's just say from the minute my feet hit the floor Monday morning I was off and running. I finally have some time to blog and catch up with everyone else before I get Joey and Emma from school today. Friday night, we went to a carnival at Joey and Emma's school. It was fun! I got "volunteered" to work a shift at the duck pond game so I got to put in some quality time. There were games, prizes, food, inflatables and kids galore! Saturday morning Shawn and Tommie had to leave at 5:30 a.m. for an out of town baseball tournament. The little ones and I stayed behind with John as he was to have 2 home games but they ended up being cancelled cause the field was too wet from all the rain we got last week. I don't know what possessed me ~ maybe it was the fact that we were down to the last bread crumb in the house ~ but I decided to take the little ones to WalMart Saturday morning for some shopping. Surprisingly, it didn't go too badly. Joey was a champ and I managed not to lose the girls so we can classify it as a success. Sunday, Tommie was back to the ball field (his team ended up getting 3rd in the tourney) and John, Joey, Emma, Abbie and I were off to Council Bluffs, Iowa to an event called Kidz Explore. I know, we live in Nebraska and you are probably wondering why in the world I would take 4 kids across the border to go to an insanity in the waiting activity. But actually it is just on the east side of Omaha and is only about a 1 1/2 hour trip for us. Plus, my friend Brenda had won 4 free passes on the radio and gave us 2 so how could I pass that up? Thanks again for thinking of us Brenda! We had never been to Kidz Explore before and the kids had a blast. There were all kinds of games, food, inflatables, shows, booths and free stuff! And the best part? We happened to meet another CdLS Mom! We were just hanging out, and all of a sudden I hear "Oh my gosh ~ that's Joey!" Here comes Staci, mom to four boys, the youngest being Vinny who has CdLS. We had never met in person before ~ although we met through facebook and blogging ~ and she recognized Joey from his picture. It was awesome! We hugged, we laughed, we cried, we talked ~ we probably could have visited all afternoon! She had her older children with her but unfortunately no Vinny! So we didn't get to meet him yet but it was so great to connect with Staci. If you haven't checked out their blog yet, please do so. Vinny is adorable! You can find them at Mi 4 Boys. All in all we had a great weekend ~ I am carnivaled out for awhile. We've got more baseball this weekend and Joey's birthday is on Sunday so we've got another action packed weekend to look forward to. Enjoy the pics! (Sorry there's so many ~ I couldn't decide which ones to post!)

Friday night school carnival...Balloon animals and games...

Emma coming down the slide...

Bean bag toss...

Joey even played the bean bag toss...he loved it!

Joey and Brandon doing the snack walk...

Daddy and Abbie waiting for music to start at the snack walk...

Huge inflatables at the school carnival...

Our trip to WalMart...note how Joey is perfectly content in the cart while the girls find it necessary to do their own thing...

Sunday Kidz Explore Expo...Emma loves the inflatables!

The girls getting the Princess treatment...

Joey and Vinny's Mom Staci...

The girls in a big inflatable chair...

Spinning a prize wheel...

Do you think this tiger is going to bite Joey's foot?

Joey loves music...here he is playing some instruments!

John and Joey taking a little break...

Filling bottles with sand is so much fun!

Balloon arch...

Oh, I wish I was an Oscar Mayer Weiner...

Thursday 13 ~ Week 5 Edition "E"

2009-04-16T15:10:00.006-05:00

I am going to go out on a limb and say that I might actually get my Thursday 13 post done at a decent time today. Of course, the minute I say that somebody around here will cry, fall down, want something to eat or drink, break something , get their hair pulled, need a ride to or picked up from somewhere. I will admit I am a little apprehensive about the letter E ~ we will have to see what comes about! Here we go...

1. Evaluations ~ Joey has had his fair share. Doctors, specialists, therapists, teachers ~ you name 'em, he's probably been evaluated by 'em.

2. Escalators ~ I don't like them. I will ride them, but I hate the getting on/getting off part. I am always afraid I will fall.

3. Eggs ~ We colored 4 dozen for Easter. We won't be craving hard boiled eggs for quite awhile.

4. Emma ~ Our 4 year old daughter. Her full name is Emmaletha Mae. She is named for Shawn's great grandma named Emma, my Grandma named Letha, and Shawn's Grandma Mae. They all passed away prior to Emma's birth.

5. Eveready ~ Batteries. You can get 4 of them in any size at Walmart for like 94 cents. So not worth it. They run out of power in like an hour. Definately have to go with Duracell. I apologize to anyone reading this who may work for the Eveready battery company.

6. Episode ~ I rarely get to watch an episode of a TV show at its regularly scheduled time. Thank goodness for DVR!!

7. Edward ~ Joey's middle name. His great grandpa on Shawn's side was named Edward. He passed away when Joey was about 2.

8. Express ~ Joey is learning new ways to communicate and express himself. He can use PECS and is working on using a Mighty Mo.

9. Equine ~ Joey will be starting his 3rd season of horseback riding therapy soon. We can't wait!

10. Education ~ All 5 of the kids will be off to get their educations this fall. John to 10th grade, Tommie to 8th grade, Joey to kindergarten, and Emma and Abbie off to preschool. Oh, what's a mother to do? Ummmmm....I'm sure I can find something.

11. Ewwwwwww! ~ Usually followed by Mom, I can't change a stinky diaper!

12. Energy ~ I wish I had half the kid's energy. Where do they get it?

13. Ebullient ~ Our E word of the week. It means boiling up or over; hence manifesting exhilaration or excitement, as of feeling; effervescing.

Come back next week for our fabulous friend ~ the letter F!

Parent Job Description...

2009-04-15T13:49:00.001-05:00

I heard this Parent job description on the radio the other day and just had to share it.This is hysterical. If it had been presented this way, I don't believe any of us would have done it!!!!

POSITION :
Mom, Mommy, Mama, Ma
Dad, Daddy, Dada, Pa, Pop

JOB DESCRIPTION :

Long term, team players needed, for challenging
permanent work in an
often chaotic environment.
Candidates must possess excellent communication
and organizational skills and be willing to work
variable hours, which will include evenings and weekends
and frequent 24 hour shifts on call.
Some overnight travel required, including trips to
primitive camping sites on rainy weekends and endless sports tournaments in far away cities!
Travel expenses not reimbursed.
Extensive courier duties also required.

RESPONSIBILITIES :

The rest of your life.
Must be willing to be hated, at least temporarily,
until someone needs $5.
Must be willing to bite tongue repeatedly.
Also, must possess the physical stamina of a
pack mule
and be able to go from zero to 60 mph in three seconds flat
in case, this time, the screams from
the backyard are not someone just crying wolf.
Must be willing to face stimulating technical challenges,
such as small gadget repair, mysteriously sluggish toilets
and stuck zippers.
Must screen phone calls, maintain calendars and
coordinate production of multiple homework projects.
Must have ability to plan and organize social gatherings
for clients of all ages and mental outlooks.
Must be willing to be indispensable one minute,
an embarrassment the next.
Must handle assembly and product safety testing of a
half million cheap, plastic toys, and battery operated devices.
Must always hope for the best but be prepared for the worst.
Must assume final, complete accountability for
the quality of the end product.
Responsibilities also include floor maintenance and
janitorial work throughout the facility.

POSSIBILITY FOR ADVANCEMENT & PROMOTION :

None.
Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills,
so that those in your charge can ultimately surpass you

PREVIOUS EXPERIENCE :

None required unfortunately.
On-the-job training offered on a continually exhausting basis.

WAGES AND COMPENSATION :

Get this! You pay them!
Offering frequent raises and bonuses
A balloon payment is due when they turn 18 because
of the assumption that college will help them
become financially independent.
When you die, you give them whatever is left.
The oddest thing about this reverse-salary scheme is that
you actually enjoy it and wish you could only do more.

BENEFITS :

While no health or dental insurance, no pension,
no tuition reimbursement, no paid holidays and
no stock options are offered;
this job supplies limitless opportunities for personal growth, unconditional love,
and free hugs and kisses for life if you play your cards right.

Forward this on to all the PARENTS you know, in appreciation for everything they do on a daily basis,
letting them know they are appreciated
for the fabulous job they do...
or forward with love
to anyone thinking of applying for the job.

** AND A FOOTNOTE 'THERE IS NO RETIREMENT -- EVER!!!

Parent job description courtesy of .Bonnie Calhoun

Easter highlights....And another reason my husband is a dork

2009-04-13T18:09:00.006-05:00

We hope everyone had a happy and blessed Easter filled with family, friends, and good memories. We had a nice weekend...a little hectic as with any activity or holiday is with our crew. On Friday night, the girls and I went with some friends to see the new Hannah Montana movie. Now, I don't know much about Hannah Montana and/or Miley Cyrus and neither do the girls but it sounded like something fun to do. Abbie had never been to a movie in the theater before and this was only Emma's second one. I will say I was a little apprehensive about seeing a Hannah Montana movie, but I was pleasantly surprised that the movie was pretty good. It gets a thumbs up from this lady! Oh sure, there are some dumb parts, like Hannah/Miley getting into a cat fight with Tyra Banks over a pair of shoes but the music was good and there was actually a plot to follow. The girls were pretty well behaved and said they liked it. So that was our Friday night excitement. On Saturday, I took the girls to another Easter egg hunt at the park. There were so many kids it was hard for the girls to get many eggs but they had fun anyway. Saturday afternoon, Tommie's baseball team had a little round robin tourney here in town and won both their games they played. Saturday night, we colored about 4 dozen Easter eggs. Yes, I said 4 dozen! It went pretty well considering right when we started, Joey grabbed the bowl of blue dye and spilled it all over himself. It when right through his clothes and turned his chest blue. He has such quick hands and daddy wasn't quick enough! On Sunday the Easter Bunny had found the kids and they liked their baskets full of goodies. Then we headed off to my mom's house for a delicious dinner and an egg hunt in the backyard. We had a nice time although it was a little hard for everyone since it's the first Easter since my dad passed away. We had another delicious meal at Shawn's folk's house for suppper and spent some time with them too. I don't think I need to eat for a month! We left about 8:30 ~ Shawn in one vehicle with John and Joey ~ and me in the other vehicle with the girls and Tommie. We had to stop back at my mom's house to make sure she was good for the night and Shawn, Joey and John headed for home. About 20 minutes later, I got a call from Shawn. The alternator belt had broken on the car and they were stranded about 10-15 miles from Albion which is still about 30 miles from our home in Columbus. They had pulled into some farmstead and waited for us to get there. We left the car there for the night. Shawn took the morning off from work so we could go back and he could fix it and bring the car home. The kids had the day off from school so John babysat while we took off. He had a new belt, jumper cables, a wrench ~ everything he needed to fix the car. Or so he thought. After our half hour drive back into the country, we pull up to the car and Shawn starts to get out. Only he sits back down, rubs his face with his hands. I say what's the matter? Figuring he would answer man, I'm tired ~ that was a long weekend. Instead he says "I forgot the car keys at home". So what do we get to do? Go through the whole thing again this afternoon after Joey's therapy session. Only this time we had the keys. How was your Monday?

The girls at Hannah Montana with Madison...Abbie fell asleep that last 10 minutes

The girls at Saturday's hunt...

Joey's blue tummy...

Coloring our 4 dozen eggs...

Easter egg hunt at Grandma Lawson's...

Joey found some eggs too...

John thought he was too "big" this year to hunt eggs...

Tommie and Tanner on the prowl...

I got John to go find a few...

Abbie and Joey playing blocks at Grandma and Grandpa Jerry's house...

Joey loves building blocks!

Friday's Thursday 13 ~ Week 4 Edition "D"

2009-04-09T22:00:00.006-05:00

Well, do I get some credit if I started my Thursday 13 post on Thursday even though I didn't finish and post it until Friday? I hope so. This Thursday passed by in a total blur. 4 kids up and out the door to school, scrambling to get the house in some kind of presentable order, get Joey and Emma from school, lunch time, Joey's PT and OT session, get John's baseball stuff together to drop off at school only to find out the game was postponed due to the yucky weather, drive to Albion to get my mom from church and help her get baskets ready for the grandkids for Easter, do some stuff around the house for her, keep her company for awhile, and arrive home at 11:30 p.m. only to go to bed with eager anticipation of no school Friday. But I am determined to stick to my guns and follow through with my Thursday 13 challenge. Although I am a bit worried about what I will do when I get to some of the more difficult letters of the alphabet ~ such as Q, U , X, and Z. Do 13 words that begin with the letter X even exist? I guess we will have to wait and find out. Here come the D words!

1. Driving ~ This is a huge subject in our house right now. With John on the verge of turning 16 this summer it all but consumes us. And another thing, back when I was in high school and took driver's ed, the class was offered through the school I attended and the cost? FREE! Now it's not offered at school anymore and you have to take it through some independent driving instructor. And the cost? $300+!! Can you believe it? What happened to the good old days of your shop teacher or school secretary also being your driving instructor?

2. Doctors ~ The list is long. Joey has seen urologists, endocronologists, geneticists, gastroenterologists, pediatricians, audiologists, ear, nose and throat specialists, optometrists, surgeons, anesthieologists, etc., etc. Not sure if all the spellings are correct but you get the idea.

3. Doorknobs ~ Joey has figured out the fine art of doorknob turning. No room is safe from him when he is in destructive mode. We have to stock up on safety knobs this weekend.

4. Donuts ~ Gotta go with the jelly filled.

5. Diapers ~ Been changing them for almost 5 straight years now. Back when Joey and the girls were younger, say we would average 5 changes a day x 3 kids. That's 15 diapers a day. That's 105 diapers a week, 420 a month, 5,040 a year. Jeez, did I do the math right? That's a load of diapers!!

6. Dolls ~ Barbie, Polly Pocket, Princess and countless other baby dolls. And every one of them buck naked.

7. Dork ~ My husband is such a dork. We have a small refrigerator in our kitchen in addition to our large fridge. It keeps pop really cold. A couple weeks ago, I had been gone to my mom's for awhile and came home in the late evening. When I came into the kitchen I noticed there were wet towels in front of the small fridge. I asked Shawn why. He said he thought it was broken cause it was leaking water all over and not keeping stuff cold anymore. I looked behind it and it had come unplugged ( probably at the hands of Joey). I said it's not plugged in. That's why it isn't working. He said I never thought to check that. See, I told you ~ certified dork.

8. Detour ~ Even though our lives took a major detour when Joey was born, we wouldn't have it any other way.

9. Dorm ~ In just 3 short years, our baby John will be off to college and dorm life. Where has the time gone?

10. Drapes ~ Forget stylish curtains, handcrafted blinds or shades in our house. Joey pulls on the drapes every chance he gets. He's not as obessesed with them as he used to be so that's a sign that he is growing up.

11. Dark ~ 2 of the 5 kids are afraid of the dark. Although they shall remain nameless, it's not John, Joey or Emma.

12. Dreams ~ Whether big or a little small, hold on to your dreams or you have nothing at all.

13. Dacryocystitis ~ Our learning word for the week. It means inflammation of the lacrimal sac causing obstruction of the tube draining tears into the nose. Lacrimal will have to be our L word when we get there.

What Exciting words will Evolve during our adventure with letter E? Come back next week and find out!

Wordless Wednesday ~ Joey's new haircut

2009-04-08T10:29:00.003-05:00

Daddy decided to cut Joey's hair last night and this is the end result. I told him not to do it as short as he usually does but did he listen? No way. Oh well ~ his hair will grow back. I think he looks so grown up when his hair is short. What's your verdict? Happy WW!

April showers bring...Easter egg hunt and snow?

2009-04-05T11:56:00.006-05:00

I know we live in Nebraska, but c'mon Mother Nature! Give us a break! It's April for crying out loud! Now that I got that out of my system here are some pics from the Easter egg hunt we went to yesterday. Joey stayed home with big brother John. He would have hated every minute of it. It was a combination of 3 of his very least favorite things ~ wind, cold, and more wind. It would also spit a few raindrops now then then for added comfort. We were in a big blizzard warning last night. Highways and interstate roads were closed and no travel recommended. It started sleeting last night and the wind was howling. Not sure what time the snow started but we lost power about 2am. And of course, with no electricity, something triggered the girls to wake up. Fun. That got Tommie up and he was bound and determined to call the electric company to get them to our house ASAP. He went around with my 1 lone candle I have (candles are no-no's in our house for several little reasons) flipping light switches. The lights came back about 4:30am and we definately knew it cause all the switches were on. John and Joey slept through the whole thing and this morning we woke up to ice and snow covered trees and streets. Now at post time, it is still windy and cold but the sun peeks out once in awhile. Perfect day to stay indoors ~ just the 7 of us! Yep, just the 7 of us! It sure is cozy ~ yep, just the 7 of us! All day! Yippee! Enjoy the pics!

Abbie and I ~ pre egg hunt

Emma and Tommie waiting for the hunt

Daddy and Abbie ~ you can see how hard the wind was blowing by the ribbons on the egg pole

All the eggs ~ how eggsciting!!

Emma ~ off and running!

Abbie rocked! This was her first hunt and she got a ton of eggs!

Emma and the Energizer Bunny?

Tommie helped the girls check out their loot...

This was my snow plastered kitchen window this morning ~ couldn't see out the north windows of the house!

The bushes covered with ice and snow ~

If anyone who is reading this and you are someplace warm and sunny I am so jealous!

Thursday 13 ~ Week 3 Edition "C"

2009-04-02T11:55:00.007-05:00

What’s the Thursday 13?
The Thursday 13 is a weekly meme with a simple theme: each Thursday you blog a list of 13 things. What kind of things? Any kind! Just come up with a list theme and run with it. One week you may list “13 things on my mind” and maybe the next week you’d list “my top 13 favorite movies”.

Is it just me or are the Thursdays rolling around pretty quickly? I can't believe this is my 3rd week of Thursday 13! This week I am tackling the letter C. If you have missed A & B, you can find them in the previous Thursday posts. I am too lazy to post the links here to make it easy for you. :o) On with the fun!

(Added note: I started this post at 9:00 this morning and am now getting back to it at 10:00p.m. tonight. At least it's still Thursday!)

1. Crayons ~ We have like a bazillion of them. And they are always getting stepped on. Or lost. Or eaten.

2. Cartoons ~ Dora, Diego, Blue, Wubzy, Backyardigans, Wonder Pets, Miss Spider's Sunny Patch, Oswald, Maggie and the Ferocious Beast, Little Bill, Little Bear, Pinky Dinky Doo...You name it, I've probably seen it. And I could give you a pretty good run for your money in a trivia contest about any of them. ;o)

3. Cinderella ~ Abbie's current favorite Princess.

4. Concessions ~ Had to work 'em at the baseball field tonight. That's part of the reason for the late posting. It was fun ~ I am now an expert Frito pie maker and hot chocolate getter. Yes ~ hot chocolate! It was about 50 degrees with the sun going down so it got cooler and cooler as the evening wore on. Good news ~ John's team won 9-3!

5. Ciabatta ~ Yummy, yummy, yummy bread! One of our famiy favorites.

6. Casey ~ One of our cats. Unlike Blackie from last week, Casey is orange. He is 11 years old and his first name was Cassie. The farmer we got him from first told us he was a girl. The boys were little then and loved the Power Rangers (the original ones) and the pink ranger's name was Cassie. When we took him to the vet, he said no, it's a male cat. So the boys changed his name to Casey. Now, won't you sleep better tonight knowing the whole Casey story? :o)

7. Car ~ John will be 16 this summer and thinks he needs a car. We live 3 blocks from the high school. I don't think he should hold out too much hope. ;o)

8. Cookies, candy, and cake ~ Too easy for me to take up 3 spots on the list with these items so combined them in one. Chocolate chip, Reese's Peanut Butter Cups and chocolate with cream cheese frosting. Enough said.

9. Crib ~ Joey will be 5 soon, but he still sleeps in his crib. He is still small enough to be in it and it is comfortable for him. He is really close to climbing out of it even with moving it away from his dresser every night. (if his crib is next to his dresser, he climbs on top of it). When he learns how to get out, I'm not sure what we'll do. I don't know if he would stay in a toddler bed.

10. Columbus ~ The town we live in. C'mon, it's late, I'm tired and grasping at straws for C words.

11. Commercials ~ Fortunately, I don't have to watch too many of them. Thank goodness for DVR! And I can't believe companies pay like a gajillion dollars for spots during the Super Bowl. Think of all the good that could be done with all that money!

12. Chickens ~ Scared to death of them. Actually, scared to death of any feathery bird type creatures. They just freak me out. If they get too close, I cover my head and run the opposite direction screaming like a maniac. Seriously.

13. Caballine ~ Our word of the week. It means of, like or pertaining to or suited to a horse.

I promise to make the blogging rounds Friday and do my catching up from the week. Have a terrific weekend!

Scrappin' 4 a Cure

2009-03-31T16:20:00.004-05:00

Oh. My. Gosh! Scrapbooking is the greatest thing ever! And you are now hearing from the newest addict in the scrapbooking world! This weekend I attended Scrappin' 4 a Cure, a scrapbooking event to help raise money for cancer research. It was fun, fun, fun! It is so relaxing and stress free I didn't want it to end. You get to visit with friends, eat great food and work on different projects. This was my first attempt at scrapbooking and I am so sorry I haven't started it before. I almost love it more than going to garage sales! Now that's serious! And to top it off, I won the grand prize drawing! I couldn't hardly believe it! It's this really cool tote bag to carry supplies in. I love it so much I might use it as a purse too!

Some pictures of the scrapping crew...

My two first ever pages! One from Emma's birthday party...

And one from our trip to the CdLS Conference in Chicago last summer...

One of me with my Grand Prize!

My cool new scrappin' bag...

I have to give a big shout out to my hubby for taking care of the kids while I was scrappin. Thanks dear! And also thanks to the Relay for Life Team Our Family Tree for hosting this event. I had a blast!

Thursday 13 ~ Week 2 Edition "B"

2009-03-26T16:24:00.008-05:00

What’s the Thursday 13?
The Thursday 13 is a weekly meme with a simple theme: each Thursday you blog a list of 13 things. What kind of things? Any kind! Just come up with a list theme and run with it. One week you may list “13 things on my mind” and maybe the next week you’d list “my top 13 favorite movies”.

Welcome back to Thursday 13. If you missed last week, I started out with the fabulous letter A. This week, we are moving on to ~ you guessed it ~ the letter B. And for those of you that saw the Special Exposure/Wordless Wednesday post from yesterday and are dying to know if I got a new dryer, the answer is yes. If you remember my saga from last fall about clothes hanging to dry for 3 days in my living room, you will know I desparately needed one. Of course we bought one just so the kids could have a huge box to play in. :o) Anyhoo ~ on with the Thursday 13!

1. Bacon ~ Gotta love it!

2. Band Aids ~ Can never have enough of them. They solve a lot of life's little problems!

3. Blanket ~ Shortly before my dad passed away, my mom had ordered him a "Snuggie". You know, the blankets that are like robes or something and you are supposed to be able to do all kinds of things with your arms while staying warm. My favorite part of the commercial is the family at a football game and they are all sporting their Snuggies. ;o) And if you buy one you get one free. Can't beat that! Anyway, my dad passed before the Snuggies arrived. Also mom ended up with 4, not just the two she anticipated. Go figure. And 4 handy dandy "free" booklights. Last week, I brought home two of the Snuggies. One for John (whose room is in the basement) and the other for whoever got to it first. Emma was the lucky one and she now lovingly refers to the blue Snuggie as her "Nuggie".

4. Basagna ~ I happen to be making lasagna for supper tonight. It always reminds me of Tommie when he was little. For the longest time, he always called lasagna "basagna". Coincidently, Abbie just told me a few minutes ago "Mommy, the basagna smells good!" It runs in the family I guess.

5. Blackie ~ the name of one of our cats. Original, I know. The funny thing is, he's orange. Just kidding ~ he really is black.

6. Blonde ~ All of the kids have blonde hair. Out of 5, I figured at least one would have black hair since my hubby's hair is black. Although it is mostly gray now. ;o)

7. Baseball ~ Tis the season. John has already had 3 JV games and Tommie is scheduled for a double header on Saturday.

8. Barefoot ~ A lot of CdLS kiddos prefer to be barefoot and don't like the restricted feeling of shoes. Not Joey. He does spend a lot of time in the house barefoot but he prefers to have his shoes on. He does a lot of great standing and taking steps with his shoes and braces on.

9. Batman and Barbies ~ Two of Emma's favorite toys. That makes them Abbie's favorites too. But she is taking a strong liking to Superman.

10. Baths ~ Joey used to hate them, now he loves them. He's come a long way, baby.

11. Bottles ~ Still washing them even though our youngest is almost 3. Joey drinks his Pediasure from a bottle. It's the only way he will drink the whole amount he needs too.

12. Blogging ~ Love, love, love it. I am grateful for all the friends I've made in Blogland.

13. Bacciferous ~ a random B word. It means "bearing berries". And that concludes the learning portion of today's post.

Special Exposure/Wordless Wednesday ~ Where are my sisters??

2009-03-25T09:06:00.003-05:00

Joey is wondering where his sisters went...and how can I knock this big box over?

Here they are! We've got tons of toys but nothing is more fun than our huge box!

For more Special Exposure/Wordless Wednesday action, visit 5 Minutes for Special Needs, 5 Minutes for Mom, and Mom Dot.

Thursday 13 ~ Week 1 Edition "A"

2009-03-19T17:29:00.007-05:00

Very special candy wrapper....

2009-03-18T18:06:00.003-05:00

March is Developmental Disability Awareness Month. The terrific ladies at Joey's therapy facility, Wiggles & Giggles, made these awesome candy wrappers to pass out as parent treats. Of course, I already ate the candy (mine was Reese's Peanut Butter Cups - yum, yum!!) but I wanted to share a picture of the wrapper with you. Thanks so much girls ~ way to promote awareness!

To check out Wiggles & Giggles (and to find Joey's picture with his speech therapist!) click here.

Yes, it's a Barbie Mustang...

2009-03-16T20:17:00.007-05:00

Emma turned 4 on Saturday. We had a family party for her at my mom's house. She had a fantastic time! If you can't tell, she loves the princesses so that was her "theme". Abbie had a great time too...of course everything that Emma gets she is sure it's hers also. So Emma will have to be a super sharer of her new stuff. Shawn and I splurged a little for her birthday and got her a Barbie Mustang that they can drive around. It is so cute and she loves driving it. It was 80 degrees here today so she had fun tearing up the neighborhood. For some reason Abbie chose not to ride with her today and ran along side her instead. She thought it was a big hoot. Enjoy the pics!

Emma's invitation (I made them with a little help from my friend Natalie...thanks girl!!)

Princess balloons...

Princess cake (made by Grandma Jerry...it was yummy!)

Presents...

Time for a test drive!

Watch out for that car!

Joey and my cutie pie niece Aubree watching the action from the sidelines...

Happy Birthday Emma!

2009-03-14T08:54:00.001-05:00

Happy 4th Birthday Emma! We love you!

Birthdays, balloons and dancing...Oh My!

2009-03-10T20:07:00.003-05:00

Boy did we have a busy weekend! We attended our first ever Sweet 16 party on Saturday night. I used to babysit a little girl named Nikki starting when she was about a year old. Her sister Ashley was 5 at the time and they have had a special place in our lives ever since. Now, Nikki turned 16 and Ashley is 21! I can hardly believe it! As you can see from the pictures, they are beautiful young ladies. We had a lot of fun! On Sunday, Tommie's club basketball team played in the Hoops Mania tournament and got 1st place. Yay for the Mavericks! Oops ~ I forgot! Sunday was also my wonderful hubby's birthday. Happy belated birthday Shawn! And we've got Emma's 4th birthday coming up on Saturday. Enjoy the slide show!

Joey, a sweater vest and Velma

2009-03-06T12:51:00.003-06:00

Joey and Emma had spring pictures at school today. I dressed Joey in his cute little sweater vest and Emma in a pretty dress. Never mind that my oldest John thought Joey's sweater vest looked girly ~ I happen to think it's adorable. Unfortunately Emma shed her dress before I could get her picture. She always takes her clothes off as soon as she gets home from school and wants shorts and a t-shirt on no matter what the weather is like outside. Anyway, the batteries in my camera are dead so I grabbed the video camera and caught Joey on the couch having a high time with Velma. I'm surprised he sat still this long ~ for him it's a record cause he sat there playing a lot longer than the video actually is. Shaggy better watch out cause Mr. Joe is in the house!

You call this comfortable???

2009-03-04T10:12:00.003-06:00

This is how I found Abbie taking a nap the other day. If you can see it, that is a blue push pop sucker in her right hand. I'm not sure where her other sock and shoe went. Oh well ~ when you're tired you're tired I guess! :o)

For more Wordless Wednesday/Special Exposure action, check out 5 Minutes for Special Needs, 5 Minutes for Mom, and Mom Dot.

Happy Retirement Mom!

2009-03-03T10:21:00.005-06:00

On Friday, the girls and I attended a retirement party for my mom. She retired from her current job as Boone County Zoning Administrater a few weeks ago and Thursday was her last day. It was a very nice open house and lots of people came to give her their best. It was a hard day for her too as she has worked most of her life, previously spending 30+ years working for the ASCS office in Albion. As you can see, the girls spent about 5 minutes keeping busy with some coloring and the rest of the time running the hall. They certainly livened up the joint!

March is Multiple Sclerosis Awareness Month. For more information, please visit the Multiple Sclerosis Association.