First the hope. Yesterday, we visited a respite house a few towns over. Janey's first grade teacher had told us about it, and I did an online application and got an email inviting us to visit. It was wonderful. The house is on a college campus, and is all set up for being a place for children and adults with disabilities to spend time and have fun. There is a great rec area, a fantastic kitchen and a floor full of dream bedrooms, for overnights they sometimes have, and a lot more. And best of all, they actually have openings! Janey started the tour by freaking out of her mind, screaming hysterically. So they got to see that. She calmed down quite quickly once she saw some of the great things they had there, and tried every bed in every bedroom and by the end was hugging the woman who works there who gave us the tour. We signed her up for two Saturdays this month. One will be a trip to the Children's Museum, and another to a local beach. We are holding our breaths---it almost seems too good to be true. It's exactly what I had wanted, and even wrote about, and it actually exists! There are scholarships available, but if we can't get one, with a little belt tightening we can manage---it's not crazily priced. There are 6 overnights a year for girls, and we might even try one of those next month, and there are vacation week camps! I keep thinking something will go wrong, or Janey will be too much for them to handle, or SOMETHING---it really feels like a dream. I'll write more about it after the 12th, when Janey goes for the first time.
The holiday blues---that was today. It's the 4th. Tony and I felt a little down all day, and talked about it tonight. Lots of reasons, but a big one is the isolation that having a child with a disability brings, especially on holidays. Gradually, we have stopped going almost anywhere. When we used to go sometimes to cookouts or the like with family and friends, it was almost always a disaster. Janey would get hysterical, and we couldn't stay long. Most all of our friends and family now also have littler kids around---grandchildren or kids of their own. We can never be sure how Janey will act, and I think there is fear on both sides about that. We don't reach out to go places, and we don't get invited, probably because people know we wouldn't go anyway. Even if somehow Janey acts perfectly, we are still on edge. We can't ever relax. Someone has to be following Janey at all times, within an arm's reach, especially at other people's houses or public places. And so we stay here. And usually, we are okay with that. We aren't hugely social people. But on holidays, sometimes it feels a little sad.
We were planning a family trip to a beach tomorrow, but talking about it tonight, we decided to make it just Tony and the boys. The beach is quite a drive, and once there, it's not like we can all have fun as a family. I want the boys to have relaxed, fun, happy times with their father (and with me) and if that means us not all being together, it's better than just skipping the outings.
The two themes tie together there. If the respite works out, and Janey can have fun, and be a place where there is paid staff and volunteers that are there just to take care of her and the other kids, then we can have some time with just the boys. We can relax a little, but it's bittersweet. It's not a full family without Janey. I had a moment just before going into the respite house of an overwhelming feeling of sadness. I was so happy to be getting a chance to see about the respite we've craved, but it felt sort of...I don't know the word. They start taking kids at 8, and I guess that's because that's an age where you know it's not something the child is going to grow out of. This is our life, this is Janey's life. We are at a point where we need more help than just home and school can provide. And in a way, that breaks my heart, although I am so happy there are wonderful people who will be able to give us that help, and give Janey a great time at the same time. But it's not normal family life. Or maybe it is---"regular" kids go to activities and sleepovers. Janey will be able to also---just with a little more support. Maybe I think too much about things. Maybe I am overthinking this.
Either way, Happy 4th of July to all my USA readers, and happy start of summer to everyone!