It’s Sam’s turn to get the limelight today.
Sam is growing up. The long days and nights slide towards childhood. Every too-early cup of warm milk that his father delivers when he wakes, and every late night like that I spend on my feet preparing his meals have been fueling this transformation; and now all at once it is upon us. If I take my eyes off of him for even a minute I’ll miss it- any second now, as unnoticed as a stray hair falling away, his infancy will be over.
He walks everywhere- no more crawling at all. He babbles incessantly in Samglish, but can say “Mama”, “Daddy”, “Kitty”, “nummy-nummy”, “Nana” (we think?), “up”, “uh oh” and “that”. He’s learned to make the sign for “more” and “all done”. His relationship with books is really extraordinary. He’s obsessed with them, and even spends long moments completely engrossed- though now it is much more desirable to look at the books with an adult reader who can quiz him on where this or that object is, or talk about what’s happening on the page. He especially enjoys showing his readers pictures of tractors or trucks. (These, apparently, are of utmost importance.)
Sam, a few inches taller than Jack, and a few pounds lighter, is a little, golden-haired beanpole. It makes him look significantly older than he really is. And it’s true that Sam has often had to BE older than he really is.
Just now I passed by his room, twenty minutes after he was put to bed. Sam has to go to bed first, because it takes two of us to bathe Jack. From behind the closed door, I heard something extraordinary. A wordless, almost-conversational “ohm” that rose and fell musically. He was singing to himself.
Standing there, dirty bottles and laundry in hand, listening, I felt two things. First, the guilt. I’m so, so sorry that Sam has had to learn -again and again- to comfort himself. I want to have the freedom to rock him to sleep every night, but since he is a twin, Sam never got too much of that, even before things got complicated. Since Jack fell ill, Sam has been expected to manage shifting caregivers, strangers in his home (though our nursing staff has always been loving toward him), and- hardest of all- being handed to whomever is close by whenever his brother’s alarms start sounding. It’s not the equal-footing life I wanted for my boys, and already they are being shaped by it.
The guilt was tempered by a second wave of feeling, so mixed in with the first that it was hard to pull apart. I feel intense pride and admiration for this little blond trooper who spontaneously wraps his arms around his brother, his cheek resting on the top of Jack’s head. He’s my partner, this little resilient boy who (I am told) looks like me. He’s a joyous warrior, and I can always count on him to do his part for this family.
Though I will miss the once-chubby face and silly, toothless smile of days past, I love meeting this emerging child who lives in our house, who loves books, and who knows how to sing himself to sleep.
In other news, we had a swallow study at Christiana Hospital today. Jack got to have a spoonful of his old favorite- pears and raspberries, though now laced with barium to provide an x-ray contrast. We watched the x-ray on the screen as a small portion of it was swallowed. The remainder pooled in his airway, likely sitting on top of the trach’s cuff.
Debbie, the speech therapist who will soon be working with Jack to provide eStim in hopes of strengthening and enervating the muscles involved in the swallow, was neither positive nor negative about it. She simply stated that the study allowed her to see what she needed to know to proceed.
So, we can think of this as a confirmation of what was known: Jack doesn’t have a functional swallow, and cannot protect his airway. But, we’re closer to getting him a therapy that may provide some help. I had a great impression of Debbie- she reminded me of my cousin Paige, actually! I think she will connect well with Jack and will push him to his greatest potential.
As we drove Jack from the hospital to Nurses N Kids, I was thinking about February 17th; when the first MRI was taken of Jack’s brain– back when we thought the tumor was cancerous. I remember sitting in the hospital chapel begging for just one favor- that they wouldn’t find metastatic drips from the tumor down his spine. I only asked for one miracle, but I have gotten so many. I really can’t allow myself to feel upset about the results of this swallow study today. Still, as John put it, it is a parent’s right to hope.
There are a lot of miracles in this world, but they are miraculous because they don’t happen every day. The rest of life carries on thanks to nothing so much as hard work. And thankfully, if there’s one thing that Jack, Sam, John, and Meg Grotti (and the boys’ grandparents, family, and friends) are good at, it’s working very, very hard.
October 1 will see our next MRI. With any luck that tumor will remain dead. I will be sure to post an update around then, if not before.