Friday, December 5, 2008

and the roller coaster starts again

Whenever I got home Mike had the video tape ready of Jude, and his episodes today. For the first time in awhile I felt the bottom drop out of my stomach like I had just gone over the tallest hill of a roller coaster. On the way down the hill I watched the video in silence, and kept myself from vomiting. I then scooped Jude up while he was having yet another episode and turned to Mike. I calmly said I would like to take him to my cousins to get her opinion, and then discuss our options. She agreed this was not normal baby behavior. I knew we could take him to the Cooks ER tonight, but I also knew there wasn't much they could do. We could wait until his MRI on Tuesday but then the questions raced in my brain wondering if any permanent damage could be caused by our delay. His episodes are not as severe as last night, but still disturbing. It seems to me like you can track when an episode is starting. His eyes get a little glazed look, his mouth opens, and then suddenly his head falls. He can be in the middle of a cry, sucking his paci, or anything when it strikes his face goes blank, the stare engages, and his head drops. I have tried to control my fear, anger, and sadness by being strong. Yet tonight I watched a little episode, and the tears started falling then the familiar ache in my chest returned. I was trying to hold back the tears which makes my stomach and my heart hurt even more. I cannot help but look at Jude and truly believe with all my being that he has a purpose in this life. Jude will create hope where there is none!!! Maybe it's through his story, his life, or his inspiration. Maybe he will grow up normal and become a great man of importance, or maybe he will be disabled and still be as important. I read a story tonight on a little girl born blind. Not just blind but without optic nerves! She cannot see at all.........yet when you hold a crayon, highlighter, or such up to her face she can tell you the color. She can also tell you what's bothering someone, and spreads cheer to anyone that talks to her. Songs she has never heard before somehow spill out of her mouth in full chorus to strangers who need to hear them. I hope to have a usb cord for my camera soon and upload Jude's epsiodes. Why would I share this you ask, because it might help someone else. Maybe that's Jude's wish.
The tiniest prophets speak the greatest words, and maybe Jude will speak in his own manner. Until then I am going to bathe my sorrows in a hot bath, and a glass of wine. Thanks to everyone for your prayers, thoughts, and hope.

1 comment:

Reagan Leigh said...

I'm so sorry Jennifer. It definitely sounds like seizures, but more specifically Infantile Spasms. Please hang in there because it is going to be a rollercoaster ride! While we still struggle to get seizure freedom for my daughter over a year after diagnosis, I know of many kids with Infantile Spasms who are now seizure free and progressing developmentally. Please feel free to contact me if you need anything!
(from the micro group)