I’ve been giving this time of our lives a lot of thought lately. Wasn’t it yesterday when Theo was just a little chubby tow-head nuzzling his little face in my shoulder, sometimes taking a bite causing me to yelp – loudly!? I remember when I used to plunk him down in the middle of the carpet and he wouldn’t/couldn’t move. I used to joke that I could probably leave the house and run a few errands only to return much later finding him in the exact same spot. I remember when he used to have 50-100 seizures a day. But they were gentle little twitches that came in clusters and looked like little harmless startles. I remember when he’d smile that sweet little smile of his, very rarely, but it would light up our world. The eye contact was infrequent and so was a full night’s sleep. He was in a little world of his own and I had no idea how to reach him and it killed me. I thought I was losing my mind. ‘What will become of him? Who will love him as much as I do? How will I ever keep him safe? What will happen when he becomes too big for me to carry him around and lift him in and out of the tub?’ Then I calmed down. I began to live a little more in the moment and find the joy in this beautiful boy. And there were an abundance of joys. Even at 3:00 in the morning when I was so exhausted, having been awake for an hour, just waiting for him to have that grand mal seizure that would knock him out and let me get back to sleep… even then, I managed to laugh and enjoy him. At first it was forced. I was choosing to be happy. I wasn’t going to let this very challenging situation bring me down into a dark depression anymore! I was defiant! And then, it just became natural, easy. Loving Theo and accepting everything that comes with that has become so easy. I don’t look at our lives and feel sorry. I feel genuinely blessed to have been given this rare opportunity to know someone so unique, so different from anyone or anything I’ve ever known or thought I would know. So why am I suddenly feeling nervous and scared again??? It’s called PUBERTY!!
What the heck? I had this down! But now, nature is testing me. My little boy is manning up very quickly. Careful brushing his teeth or he’ll bite your finger. Hard! And that little kid who was plunked down on the carpet without moving? Oh he moves now. A lot! Not only am I unable to run errands, (by the way, I never did that) I can barely leave him long enough to take a shower. When I do, I often return to something that involves blood – falling and banging his head or biting clean through his lip or breaking his finger or toe. And those gentle little seizures? Yay, he’s not having 50-100 of those! In fact, he’s not having any gentle seizures anymore. Alas, they’ve been replaced by nasty, huge, crashing to the ground, body jerking grand mals. And the sound he makes, like a slow pained moan is heartbreaking. But wait…no! I’m still defiant and I still choose happiness. I must admit, it’s wearing me down physically a little but I refuse to let it take my joy. Theo is my joy. His sisters are my joy. And that awkward, dangerous walking that he’s doing, I’ve given it a name…Baby Giraffe Syndrome! And that makes me laugh and it makes others laugh who start to feel sorry for us. He’s just beginning those awkward teen years except that he has a leg up on all the other 13 year old boys because he already started out awkward. And when I get my finger bit, I still laugh. The look on his face isn’t malicious or intentional or apologetic.
My finger was there. My fault. And those little nuzzles I used to get from that 2 year old tow head? I get them even more now. The minute he sees me, he reaches out and pulls me in to him and places his lips on my head. My heart melts. And the long strands of drool that accompany those soft kisses are worth every sloppy drop. The eye contact has become more frequent and those rare smiles that lit up my world aren’t so rare anymore but they still light up my world. He still doesn’t sleep through the night but when he does decide to go back to sleep it isn’t always on the heels of a big seizure. He just lays down and starts to snore. Like a MAN!! And I laugh!
This puberty thing isn’t for the faint of heart. I’ve already been through it twice with his sisters and they don’t even have a disability. But you know what? They’re becoming amazing women who make their dad and I proud. Theo will do the same. I’ll spend endless hours worrying about him, worrying about his future. I’ll spend endless hours trying to get all new equipment for his rapidly growing body.
Keeping him safe is our greatest concern. That big body is getting heavy. I give it one more month and he’ll be taller than me but he still weighs less (I’m so jealous). He loves his bath and refuses to get out even after he’s become a little prune. I have to drag him out and it’s not easy. Soon it may become impossible.
But his defiance just causes me to laugh. I’m still laughing! His long arms reach for anything they can find. Let’s knock over a bottle of wine in the grocery store! Let’s grab a favorite ceramic plate off of my boss’ desk and toss it across the room! Let’s grab the bowl of food that was supposed to be dinner and fling it across the kitchen! Let’s reach for mom to give her a hug but pull her in by her hair (ouch!). Sometimes he’s a little caveman. Sometimes he hurts me with the full weight of that tall, muscular baby giraffe accidentally stomping on my bare foot and giving it a little twist just for good measure. But never, NEVER, is there anything remotely hostile or intentional in the pain being inflicted. He still has a pure heart and a gentle spirit. Theo is pure love. All 5’5” 110 pounds of him.
I’m scared for his future. I’m scared that I won’t be able to keep him safe. I’m scared that there won’t be a home for him to live in close by. But most of all I’m scared that the people who care for him after I’m gone won’t know the joys because they’re too busy focusing on the challenges. The challenges are there. Trust me. The teen years are challenging! I will try to remain optimistic that, like his sisters, the challenges will subside. Notice how I didn’t say ‘disappear’. The only thing I can attempt to have any control over is how I choose to respond to this man-child (who is rapidly losing the ‘child’ label). Most of the time I will choose to laugh!
Jennifer Griffin, Parent Resource Coordinator at Alpha, and, more importantly, Theo’s mom