Hospitalizations and times of crisis aren’t new to us. We’ve had times when Joan was in one hospital with a child and I (Ron) was with another. It was true with Kari and Ryan. It was true when we were foster parents to medically needy children. This experience isn’t quite like that, but it seems close since our home is more akin to a medical facility than ever before. What is exciting to me is to realize that Joan and I are still working together as a team after all these years, perhaps better than ever at that. We each have our roles and we feel that each are at the right place. With regard to this admission, we’ve thought about switching after a period of time – Joan coming here and vice versa. But why do that? Too much of a learning curve midstream (at least for me). If it ain’t broke, let’s not fix it.
Kari seems better to me. She is more alert and not having seizures and becoming more comfortable. Of course I think, “What if these infections repeat themselves?. What then? Being parents to an adult with disabilities is complicated. Others in our position agree that once the child has graduated from pediatrics, there are less options of care. It becomes a hit or miss experience. Fewer doctors seem comfortable tackling Kari’s issues. As Joan is saying more frequently: “We’re kind of out there on our own. We’ve kept her going all these years – we tend to know what she needs and we have to be her advocate or just do what needs to be done.”
Joan’s Report: So after 3 1/2 hrs of morning therapy Matthew got a break in the sunshine on the balcony. In-patients are required to learn about gardening this Spring. This is Matthew’s plot.
He is exhausted from his first full day at the Seashore House, but never did he “push back” or refuse to do the work🙌! Amazing! He is looking forward to rewards. One of these evenings in Rehab they will have karaoke night and that is all Matthew can talk about. He can’t wait to use the microphone. If you know Matthew, you know he is back to normal😊 (at least in that sense). (Insert from Ron: Perhaps you have seen the movie “Radio,” starring Cuba Gooding Jr. I’ve often said that if there is ever a movie about Matthew, it will be called “Microphone!”)
I (Joan) am learning the Rehab ropes, but I am grateful for a weekend coming up when we kick back a bit. Praying for rest for us both!
The comment of the day: Matthew was on his last leg with walker use at end of therapy and was having trouble making it back to his chair. “Oh my, I feel like an old lady!” The whole staff erupted in laughter.😁