Yesterday was a tough day. For me, not for Harry. He's a rock star.
Harry's best friend from his class is a trip- well, together, they are hilarious. The way they present is very similar...very smart but have difficulty letting us know what they know. They both are nonverbal and use buttons and switches to communicate, and they both have to make extra effort to get their hands to the preferred button or switch- poor motor control is an added obstacle to communication when a kid is nonverbal.
His mom and I have gotten some very funny stories from the teachers. For instance (and I may have shared this in an earlier post), they have a tendency to use their buttons (with a response recorded onto them) to interrupt each other, or to answer questions for each other- they basically love to mess with each other! Dirty looks too! Wonderfully typical boy behavior! And by the way, Harrison did in fact let the teacher know that this boy is his "best friend."
Anyway, this friend has been in the hospital for a couple of months now with some internal issues. With some pretty intrusive intervention, he will be ok and hopefully back home and back at school sometime soon. But it is a huge adjustment for an already medically complex child's mom. He is now on IV nutrition instead of the gtube he has always had. That's hard. Hard to learn, hard to accept, hard to manage. Of course she is there with him every day, with her 2 or 3 year old daughter in tow. And not a lot of support or help. Oh, and conversation was a bit of a challenge because her first language is Spanish and I drew a blank from my high school classes. I am going to download Google translate or something like it for future visits.
This has hit me hard, and I have not been able to get them out of my mind. I know our "just visiting" - a mellow 90 minutes in the Center for Families off of the hospital lobby, with a fun toy for him and some cookies for mom- I know it was greatly appreciated, but I just feel like I want to do more for her. I imagine my people felt the same way when Harry was living there for his first 6 months, and as the mom I just did what I had to do, as would anyone else, as this boy's mom does. But it is so unsettling to be on the "just visiting" side of the table. Sympathy, empathy, helplessness, uselessness. And I barely know this woman. I don't know if the things that were helpful to me would be helpful to her. We are just getting to know each other now, because of this situation. Harry is his friend, and I wanted this boy to know that his friend misses him. Last week we actually helped them have a phone call on speaker, while looking at photos of each other (instead of Facetime) and they seemed to enjoy being in touch.
Well, Harrison and his friend were thrilled to see each other. In fact, Harrison was alert and giggly the whole ride down in anticipation, when normally he would be having his lunchtime nap. And he was happy and in a great mood after the visit as well. They definitely miss each other. I know, in the end, that her child's happiness from seeing his friend means so much to her. I also know how easy it is to forget to take care of yourself, and I want to do more than just worry about her. She is an absolute sweetheart, and of course, strong in so many ways. I guess this is my chance to start paying it forward.
