Walk with the Riedmiller Family...: 4/1/10

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...