Happy Birthday!

Jude had his birthday. I was happy for the little guy and sad at the same time. He enjoyed the cake, the attention and the tissue paper but I felt sad having to help him get his hand to his mouth to eat some frosting. I see much younger babies all the time able to hold toys and sit up -- and it hurts to know that he can't. And I do realize a large part of it is feeling very, very sorry for myself more than him. I really, really, really want a "normal" baby -- I so want to wake up and realize that none of this ever happened and Jude is just fine. While I have met many wonderful people in this journey -- I could have lived my life just fine never knowing them. People always say they are grateful for this or that hardship in life, I'm not grateful! Why should I be grateful for the fact that my child has to struggle to do the simplest thing?

One diagnosis

Jude finally has an "official" diagnosis -- but not of CP. It is for Myoclonic Epilepsy, central hypotonia, and developmental delay. The neurologist said a diagnosis of CP might come later when the mycolonic epilepsy is under control (it isn't like it is an out-of-control thing right now) but the epilepsy could be causing some of his developmental problems. I guess we'll see.

Birthday Coming Up

And I dread it. It sounds horrible but I don't want his 1st Birthday to come. There are so many things he can't do and a marker for all of that is coming up. It's like turning thirty-five and you are AMA, you turn 1 and all sorts of labels will start popping up, globally delayed, official diagnosis of CP, therapies, arghh......While he was a baby, it was OK, but he is moving into toddler age and not able to toddle.

Every day's a new day

Every day is new and every day is different. Some days, Jude does so well I can imagine a future with him on the soccer fields with his brothers and sisters -- other days I imagine him trapped on the sidelines in a wheel chair. It isn't that sports are that important to us as a family, but the ability to do things together is. Will it be fair to Jude to do things he can't -- or will it be fair to the other kids to limit family activities to just the things Jude can participate in? I hope it doesn't come to that.

Jude loves Josie (but not vice versa)

Poor Jude. He loves his sister, Josie, so much and she could simply care less! I can't fault her too much, she is only two. He loves to watch her run around, smiles when she is near, and is just delighted by her very existence. Not so different from his other siblings, where the younger adored the older and the older just wanted to be left alone. One of my children managed to ignore his brother for almost 2 years after his birth by simply refusing to acknowledge his existence. Josie has just recently started showing things to "baby" -- but not that much. The only time Jude has really sat up for awhile was when he was watching Josie. And who said love couldn't produce miracles?