Thoughts on Will's Last Day There /First Day Home

Everything always seems to happen with Will in October. In October of 2010, he had g tube surgery, and at the end of the month did a week at a feeding program at UVA. This October he started his 8 week treatment at Kennedy Krieger. We completed those 8 weeks today.

It was such a milestone in our lives, to finally undergo this program. And it was such a strange time, too. For the first time as a mom, I was away from two of my kids basically all day long. Some days I only saw Porter for 30 minutes. We had a live-in nanny, which made it all possible. It was a program that I had not wanted to resort to, and which I was dreading beginning. But in the end, as strange as it was to be gone all day with just one child, the strangest part was that we got completely used to it, and there are many things about it I know I will miss. It was really nice to spend so much time with just Will. I doubt I will ever get that sort of one on one with any of my kids again. I treasured that.

He is going home with heavier protocols then they anticipated at the beginning of his admission. We are not able to put a full plate of food in front of him, as they thought. But we will get there, and as we do, we have protocols that get him to eat enough each day that he is no longer reliant on his g-tube. He wouldn't have it removed for at least 6 months, since it requires a surgery to re-install if that became necessary, but a dormant tube has been the prayer of my heart for years now.

It was strange to go home today after so many weeks of such an intense program. It is sort of like stepping off an airplane into a new place, and it is all the stranger to me that I will probably be over it again in the next two days. Adjusted again already, like it was just a dream.

I want to record a bit about Will as he is right now. He has always been a really very sweet boy. Always quieter, more subdued and milder than his older brother or other boys. But he seems to have outgrown that lately, and those traits all but disappeared during his admission. It was kind of irritating, actually. I felt sad the other day when I saw another boy his age get a huge smile and run to his feeder when she appeared at the playroom to take him to his meal. Why was Will suddenly acting so old and too cool? He would have been sweet like that last year, 6 months ago. Apparently it is also common for kids in these programs to begin acting out in other ways as their control in the meals disappears. He began to seek out attention by acting out a bit. He would throw pieces of food at me during feeding times, call me "sucka!" or wiggle around excessively in his seat. I most hated his heavy usage of "Duh!" and the eye rolling. These behaviors persisted outside the program, too, and he found ways to shame us during Primary or with extended family. Because he was doing these things for attention, I am supposed to ignore them so as not to reinforce, but it drove me crazy. Will's "feeders" (behavioral psychologists) were really amazing, and a huge support to me in handling both is eating and his annoying behaviors. I will always love them and owe much to them.

I am treasuring signs of his old, softer side. He was so thrilled when the team presented him with his new backpack. He even loved that it features a little monkey chewing food, opening his mouth to show that he's swallowed, and then getting praise, just like his protocols. I was thrilled that the teenager possessing him has not totally swallowed up his guilelessness. He got a t-shirt, too, which he declared he couldnt wait to wear every day. Just like a little boy I know he is. He participated in a swallowing study today, for which we received a $20 gift card. He told Andrew about it and said sweetly that "at least [he] got some bucks!"

He fell asleep on the drive home (we left after lunch) and my speeding plus lack of traffic meant that we were in time to pick up Andrew from school. Will insisted that he had not been sleeping, but admitted that he "could barely keep [his} eyes open." Then he remarked, while crossing the school parking lot, that he could barely recognize the school, it had been so long since he'd last been. He held my hand. Andrew doesn't really do that anymore. Andrew was happy to see us. The boys played on the playground together before we left, wrestling and playing soccer. It was really the first time Will had been outside during the day in months. He looked so happy. When we got home, the boys played soldier in the basement. They didn't argue once. It was wonderful, really. I feel so much hope and joy right now.