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Sunday, July 11, 2010

Have you ever been...

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.

Saturday, May 8, 2010

Today is CdLS Awareness Day

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.

Monday, April 26, 2010

CdLS then... and CdLS now...

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."

Friday, April 9, 2010

Bad Blogger?!?! Not me!

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...

Friday, February 26, 2010

Rare Disease Day

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.

Thursday, January 14, 2010

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

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 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

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