Probably not unlike most people living through this pandemic, I have good days and bad days. But when I think about what the kids are missing out on this summer I feel sad. Summertime for us takes a lot of planning and foresight. And I mean A LOT. We almost start planning for summertime almost as soon as the current summer is over.
That is just the reality and the requirement of having a child with special needs. There is no last minute. Activities in general have to be well planned out and organized. When I am looking at an 8-10 week window, and there aren’t many options available for a complex child like Maclain, we have to put a ton of time and energy into filling up those weeks.
We had a pretty epic summer planned this year until Covid-19 changed things. A long overdue trip to Scotland to visit family, which took me literally 3 months of back and forth with the airline to book our seats (that’s another blog post, I am still not over the rage) and a few more months back and forth with a car rental company, because we can’t just pick up a 4 door sedan at the airport and be on our way.
We spent over a year thinking how we could make this work with coordinating baseball schedules so we didn’t miss too much,along with taking time off of work. This was how we were going to start our summer. That was to be followed by a trip to Nashville to watch our older son play baseball, which Maclain has not stopped talking about, and then it was almost 4 weeks of camp.
10 days of an overnight camp which Maclain has been attending for years with his besties. This camp gave him some independent time away from us being a “regular” kid and gave us 10 days to catch our breath. And he wanted to be there for his 13th birthday. Birthdays at away camp are pretty awesome. That would have been followed by 2 weeks of day camp with an integrated program again with his friends. And in between all of this there would be Challenger baseball which would have started by now.
Instead, we have nothing. Yes, we have our health and each other and all of that, but explaining that to an almost 13-year-old who lives for these summer experiences because they involve adventure and an escape from the everyday isn’t easy. There are no substitutes, and nothing to look forward to for him.
Maclain lives for adventure. He loves to travel, see the world, spend time with friends doing cool things. Would you ever imagine him white water rafting? Well, he has, and not just once. These are the things that specialized summer programs offer for him, something out of the ordinary. He can’t just hop on his bike and go off exploring, or hit the skate park, or go to Wonderland with friends. He needs an adult to assist him all the time, and that is usually mom or dad. Boring right?
There is so much he just can’t do like other kids his age, and that is why summer and all the fun things we plan are so important. And I know that I might sound like I am whining, especially given what is happening around us, and maybe I am. But I am sad. For him, and for us, as we try to think of what we might be able to do if we ever get the go ahead to do that. And as I brace myself for all the making up I am going to have to do.