I am sitting at Jack’s bedside in a dark room strewn with toys as he naps. He’s had a rough few days of pesky fevers, persistent headaches that scared the crud out of me, and now things have settled into a familiar pattern of a bad virus. It’s not too bad- just some extra meds and breathing treatments throughout the day, and extra vigilance on our part. The missed work is the hardest part, and I hope we will get through this one without a hospitalization.
When Jack has headaches that are not caused by ear infections, I panic. I pace around a lot and chew on my fingers. We are very good at keeping the “what ifs” under stern lock and key in this house, but when I see Jack crying and clutching at his head, all the bad scenarios crowd around me, and I remember that the swamp is very near.
Oncology assures me that a reemergence of the tumor is not likely. The greater fear is shunt infection or failure. Thankfully, Jack’s bad headache seems to have coincided with what was probably a viral fever, nothing more. If we see it again, we’ll be heading to Dr. Piatt for a consultation, I think.
Perhaps one reason that my fears seem so amped up this time is that Jack has been doing so incredibly well.
There are two very big pieces of news to report. First, Jack is beginning to communicate! He can sign “please” now, and “wash”. It is surprisingly difficult to teach a child who is not rewarded with food how to communicate. Turns out, the bath and playing with water are favorites, so perhaps that is why “wash” has had resonance with him. I’ve been staying up late here and there trying to learn signs. I’m now signing “thank you”, “mommy”, “daddy”, “bedtime”, “cup”, “cat” and “play” pretty consistently to him, in the hopes that if done enough he will pick it up. His receptive language has improved as well. If you ask him if he wants a bath, he will drop what he is doing and head for the tub. He is pointing to things with more consistency.
Jack watches everything, but he often seems withdrawn. We wonder, is that just who Jack is- more of an introvert? Is he cognitively different from us? What is he thinking? It was as if John, Sam, and I were on an island, a solid place made of names, with rules and patterns that made things knowable. Jack seemed adrift on an ocean that we couldn’t bridge. His arm-waving was unintelligible to us; our constant chatter a barrier to him. When Jack first “got it” and began signing consistently for things that he needed help with or wanted, it felt like we had thrown a line into outer space and hooked the moon. A chasm had been crossed, and perhaps the moon was not as far as we had always believed it to be. Perhaps it had been sitting at the dinner table with us all along.
Sam is Jack’s great ambassador to the world of language; the more Sam can pick up of some basic signs, perhaps Jack will pick those things up too, as it is clear that Jack wants to copy everything that his brother can do. Sam had been saying and simultaneously signing “please” for about three weeks before Jack joined in. He also signs “more” and (less consistenly) “baby” and “eat”. Sam’s own language acquisition has hit the explosion phase. He is saying new words every day now. The newest item yesterday was “bus”. It’s exciting to see Sam begin to construct partial sentences such as “Daddy go?” or “Bye to Daddy” and to follow simple commands. However, the command thing doesn’t always work out the way we plan…. the other day, he was carrying around a hunk of banana that he clearly was not going to eat. We asked him to go throw it away. He obediently toddled into the kitchen and returned empty handed. Only two days later did we discover the banana neatly placed in the pantry on top of some canned goods. Yuck!
The second exciting piece of news is that Jack is begining to walk! He’s not interested in the truck push-toy that Sam used during this phase. What he likes is the musical pusher that plays tunes when walked around the house. His gait is his own- he walks by lifting his whole leg from the hip in a very stiff-legged motion, stabilizing, and lifting the other. He hasn’t worked out the knees yet. The leg on the right is also turned outwards a bit, the foot pointing out rather than straight ahead. My feeling is, that’s great! PT and OT can work on the particulars with him- the motivation to walk is what matters most to us, and he’s got it.
So excited to see where we go next!