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Wednesday, July 29, 2009

Sixteen candles...

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!

Tuesday, July 21, 2009

Just rambling...

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!

Tuesday, July 14, 2009

The day the fair came to town...

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!

Thursday, July 9, 2009

A much needed proclamation...

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

Monday, July 6, 2009

4th of July highlights...

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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?

Friday, July 3, 2009

Joey's Walk...

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!

Thursday, July 2, 2009

Thank you...

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.

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