He's Jumping!

Today I walked in the door from some meetings at church and the kids are excited as usual. And I see my son jumping. I stand there speechless, question whether or not my eyes are truly seeing what I believe they are seeing, look at his feet as he jumps again and oh my goodness there is almost two inches between the floor and his foot. He continues to run down the hall, despite it scaring me and now he jumps up and down.

I have always said that I will not further handicap my son. And that's the advice I typically give to anyone - do NOT further handicap your child. And I really truly mean that, but at times, especially like today, it is so difficult to follow through. I understand if I look at the big picture, it's best for him to be a typical 4 year old, with 4 year old adventures and 4 year old races. So I watch him. Pray and let him be a 4 year old boy.

So today he's jumping. And I THANK THE LORD for choosing us to receive one of HIS extra special children.

Lil Louie had his IEP this past week. He is still 1.5 years away from starting Kinder but I am so glad to see that he is attending a school that cherishes him as much as we do. We discuss his limitations and how tired he gets and whether or not he will need extra quiet time once he starts Kinder. And in my head I think absolutely no way because my son will have to learn to adapt. He will have to work harder to accomplish the same functions that we all take for granted, but he has to adapt. Am I wrong for that? I understand that he has a physical disability. I get that better than anyone else. But it's just that a physical disability. I don't mean that Arthrogryposis is a trivial condition, it is not. But it's definitely not dire.

His intelligence astounds me. He takes my breath away on so many levels and shatters my heart and heals it a million times over, but I can't allow him to use his inability to use his limbs like others do, as an excuse.

It would be easier for me to coddle him. To shelter him. But my expectations for him cannot be any different than any of my other children. Therefore, I will continue to parent him with love and patience but definitely with more strength that I thought possible.

Two Years Later

It's hard to believe that so much time has gone by without posting a blog. Things have been rather hectic, and I've been doing my best to manage the chaos as best as humanly possible.

For those of you who don't know this, I became President of Arthrogryposis Multiplex Cogenita Support, Inc. But I'm still a wife. Still a very active member of my church.
Still a mom. Still work my full time job. Still me.

Since my last blog there have now been three conventions for the Arthrogryposis Group. Year 2 was in Dallas, TX. Year 3 was in Dublin, Ohio. Year 4 will be in Philadelphia. It's amazing to have been part of this organization for so many years. The growth of an idea that started out as Ani's dream is mind boggling. From year one in Chicago, to year 3 in Dublin was about 400, next year in Philadelphia I expect that number to double. Our chair of this even MaryBeth would probably want me to bite my tongue. :)

The artist I spoke of in my last post, is now a dear friend, and Lily Rose's godmother.

Lil Louie, who is now 4, has defied the odds, and started walking at 2.5. Learning to balance was a labor of love, one that we continue to work on. But he's walking. Thank you Lord.

All of the kids really are doing great. This is my oldest' last year before high school... Sigh... time flies.... My Thalia just started Kinder.

Anyway, I'm reading The Shack by Wm. Paul Young. If you are a Christian, which I hope you are, read this book. If you're not a Chrisitan, read this book. This book will help you on your journey to not just know God, but to love God, and hopefully learn to learn and love His children as he does and how you do or should.