SO here we are — It’s May and that means Tuberous Sclerosis Awareness Month…..
I could start in on cold hard facts about seizures, tumors, medication et al, ad nauseum, but I thought it would be better to tell you about the little boy– some things about who he is, rather than what he has.
- Jack has an airplane pillow that he loves. It is made out of an old t-shirt his dad bought him that had a P40 with sharks mouth on it. When the t-shirt became too small, I turned it into a pillow just on a whim. Had I known it was going to be such a big hit, I would have crafted it better. No matter. It got worn down and loved on and became threadbare. So the picture got cut out, reinforced and sewn onto ANOTHER t shirt pillow. And it is still a much beloved and cherished comfort item. When sick, when tired, when in need of comfort, Jackson will ask “Airplane pillow?
- Jack has, over the last year, developed a sense of humor. While he will often shout -seemingly out of nowhere “FUNNY FUNNY”, he has learned how to “trick us” on purpose. He will show us the base of a stacking toy– a circle– and say “It’s an octagon!” to which we will reply “That’s not an octagon, that is a CIRCLE!!” And that just delights him and tickles him to no end. He will do this with other shapes and items for the sheer joy of being corrected.
- Jack is very enamored of his sister Darrah. He will stand at the end of the hallway (where we have placed a gate) and yell to her room “Darrah!? Ner are youuuuuuooou?” He loves to sit on her bed with her while she plays video games or listens to music. When she has friends over, he will do the same thing and all of Darrah’s friends treat him with kindness and respect. He has learned the word “sister” and hugs and kisses her every night before bed.
- Jack has made a lovely friendship with my ex husband. While it seems rather unusual to people, my ex (Darrah’s father) and I have an incredibly great relationship. S0 much so that Clay and I encouraged him to move in to the mother in law unit on our property. He delights in blowing bubbles over the fence for Jack and Jack always says hello to him -WITHOUT prompting– when he comes into our home. They are both fairly solitary creatures and I believe that they recognize that in each other.
- Jack tells me about his day when I put him to sleep at night. Over the sound of the sleep machine, his hand in mine, I get to hear about rectangles, spinnings, straws, woo-hoo, and other mumblings. Then they taper off and I get to hear a soft snore not unlike the purring of a cat. Jack lives and plays hard. It’s only natural that he sleeps pretty hard, too.
- Things that amuse and delight Jack : Straws, circles, Crocs, baseball, fans, rectangles, Spongebob, Elmo, a book about Cats, Legos, Daddy’s HAT on his HEAD!, fuzzballs in the breeze, balloons, the moon, throwing things, warm breezes, the bounce-poline, and watching children play. This list may be amended at any given time.
- Each of us in our immediate family is “authorized” by Jack for a certain story. While each of us is certainly capable of reading to Jack, we are each associated with a book and no one else can do it “right”. For me, GOOD NIGHT MOON. Darrah gets the CAT BOOK. And Daddy reads the Spongebob series.
- Jack is a force of nature. There is a purpose about the way he walks. He is never bored. He is always aware and watching
This is but a sliver of who Jack is.
There is also more courage and joy in him than you could possibly imagine.
Every day is journey. Every day is discovery.
And every day holds the possibility of seizures.
And every day he has over 30 tumors in his brain.
And every day he is severely autistic.