So I decided last night to write a blog instead. I had just finished my daily reading of a fabulous blog about raising Special Needs kiddos called Love That Max, and was once again moved to tears. And then it hit me: I am called to share my story too! Now that my son is 21, I do have so many stories to tell. Stories that can and will help others, as other have helped me. I cannot wait anymore for all that space to open in my life to sit down and write my memoir. So a blog it is!
My son's name is Willie and he is 21. He is our first child and we had a perfect life in Austin, Texas as he entered the world. My husband, Charlie, was studying for his PhD at The University of Texas and I had decided to stay home with this much yearned for and loved baby. When he was 2, Willie got an ear infection, a common childhood illness. He seemed sicker than usual and thus went to the Doctor on a Saturday. The Doctor put Willie on antibiotics and said yes, he has an ear infection. That evening, Willie had a seizure. Another post will explain why we were "used to seizures," as Willie had had many in his short life, of unknown origin. So off to the Hospital we went, as was the routine. After getting the seizure stopped, this one was only 55 minutes, Willie was checked into the Hospital. But something wasn't right. Willie wasn't rousing and his applesauce-laden Depakote, to control his seizures, was dripping down his mouth. We kept saying to the Doctors something is wrong. They kept saying it's OK, give him time. And finally, several long hours later, the Doctors called us into a procedure room to say Farewell to our precious son. Things were definitely not OK. As the Physicians were attempting to run a Spinal Tap on Willie, he started slipping away.
There's lots more to this story for another time. But eventually, as Willie officially sunk into Septic Shock and a Coma, we were told that Willie had contracted Bacterial Meningitis.
Willie was in this Coma for a week and the hospital for 3. During that week, we were glued to his Hospital crib to either say Goodbye or to see him when he awoke. Willie lived obviously, but the Meningitis changed his life forever, leaving him with Brain Damage. During the Coma the Physicians said he wouldn't walk or talk again. But as soon as he awoke from the coma, his first words were "Daddy, I want yogurt." Then a couple days later after he had a blood transfusion, his face turned all rosy pink and he started running all around the hospital room. Still, the Doctor's urged all kind of Therapies: PT, OT, Speech. They wouldn't and couldn't tell us Willie's future. Brain Damage is so unique.
Nineteen years later, Willie thrives. He attends the Transitional Program at The Camphill Special School. It has been quite a journey to get him here, with such extreme lows and not so many highs. He still struggles but he is happy and is a valuable and contributing member of his community.
Besides introducing Willie in this first blog, I want to explain the title. "Who Are You Today?" has been a constant imaginary game Willie has played since he could talk. He takes on the personae of a character from a book, movie, myth, etc and talks to us from that perspective. You never know who he is going to be. Willie's rich imagination and inner struggles dictate the imaginary character of the day. The 21 year old Willie struggles with why he has Special Needs and his 3 siblings do not. So he becomes characters who are on the fringe of society and who have struggled and continue to. His character choices these days are Slash, the singer from Guns and Roses, Batman, The Phantom from The Phantom of the Opera, and Darth Vader to name a few. When you talk to Willie, you can usually tell from his accent, posture, mannerisms, and sometimes costumes who he is. Not always. So I am constantly saying to Willie "Who are you today?"
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