This week Jack began his next phase of care- no more daily runs to the hospital for us. Now, Jack is picked up at 7a.m. by the transport unit of Nurses ‘n Kids (“N&K”), a medical day care facility located in New Castle, DE. Jack resides in the “purple room” with the program’s little ones. He has his own cubby, crib, and daily nurses. He should soon begin getting therapies 3x per week. Jack doesn’t seem to notice how much this new arrangement is helping his parents to reclaim their lives. What Jack is paying attention to is how much likes his new friends. For three months, he was on isolation in the hospital. Once he got home, he was fascinated with Sam (who doesn’t have much time for Jack, I’m afraid) but now, Jack’s days are full of other little children, and he loves it.
For Jack’s mom, however, it’s been hard. When the van pulled away taking Jack with it, I really struggled. Later that day, when I arrived at N&K to see Jack and help him transition to his new daytime place, I have to admit that it was difficult to see my son in an environment with many other severely disabled children. To me, Jack is just himself. He’s just Jack, with Jack’s limitations and Jack’s strengths. I find that I only use labels when I’m trying to explain his case to others. Almost like a language that I have to use in order to translate the situation to the world. Phrases such as “neurologically damaged” or “special needs” or “medically fragile” just never seem right when I talk about Jack. “Complicated” is the only word that fits.
So, going to Nurses ‘N Kids, and seeing little children born catastrophically early, or with bodies limp as noodles, or with obvious cognitive challenges, whom society has trained me to label in certain ways, and then seeing my own Jack sitting there among them with his own strange neck-tilt, his scars, and his drooling trach, was illuminating.
A little girl, smaller than Jack, but much more mobile, and with a mouth full of teeth, (I later learned she is already two years old) helped Jack to bang on a clear saucer-shaped toy filled with round beads. Jack was thrilled and entranced by her. He reached out to touch the dark pom-pom of her ponytail. He looked at her in delight and awe. When she moved away, using an odd, cross-legged bottom-dragging crawl, Jack turned to me with an anguished expression of grief twisting one side of his mouth downward.
Jack doesn’t have a framework. What I saw was a little girl who has a terribly hard road before her. I felt for her parents. My mind catalogued all of the developmental milestones she hadn’t seemed to have made by age two. But that’s not at all what Jack saw. Jack saw a small, enchanting creature who wanted to play with him, and whose ability to move at all was enviable. Would that I could learn to have his eyes.
I was a special needs kid myself. I have a learning disability that landed me in special education classes (classes I think about to this day and am incredibly grateful for….) But I also remember the moment, some time in middle school, when I looked around at those in the classroom with me, and I realized that we were the “not normal” ones. And it hurt. It hurt with the deep kind of pain that doesn’t go away, that eats at your self-confidence for years, despite the best efforts of a very loving and supportive family.
Sitting on the floor of the purple room, I grieved to know that Jack will experience that moment, too; more acutely than I ever did. But I’m trying hard to believe that it is Jack’s sloppy luck at work again- that I was given my relatively small cognitive burden so that I might have a better sense of how to help Jack both work around his limitations and also to accept them. I hope I am up to the task.
Today, Jack is not doing as well. He’s experiencing low fevers, an increased need for oxygen, and just a lot more secretions than normal. He’s just plain miserable. We’ve visited the pulmonology team at Nemours yet again. We’ve got new medications and new marching orders from the doctors, and we’re going to try to tackle this ourselves, without admitting him to the hospital right away. Another great thing about Nurses ‘N Kids is that they don’t mind looking after a kid with a bug.
In the grand scheme of my complicated son’s life, what’s one more bug, anyway?