Also about summer, kids are out of school, schedules are forgotten and unnecessary, and there is a constant feeling of freedom...unless you are us. We still have feedings every four hours. It is still extremely difficult to get around to places. It's too hot for Lu a lot of the time. And regardless of the season, Lu still demands to be in bed at 7. So maybe I like winter better because everyone else has more of a structured life too, and then we don't feel so left behind.
Right now we are waiting on some volunteers to build us a ramp. We have the supplies sitting in the driveway and we are just waiting for the carpenters to have time. Having a ramp I think (hope) will make getting outside a ton easier for us as I can then keep Lucy's wheelchair in the house and load her up and just zip outside to the swingset, to the yard, for a walk or whatever we want to do. As of right now, I have to go out to the car, unload her wheelchair, load her into it after carrying all 40 pounds and 41 inches of her outside, and then reverse the whole process when we are done. So, all of the things I imagine us doing, like catching bugs, swinging, picking flowers, gardening, gathering supplies for nature art...all seem so close, but so far away when I look out the window. Everything is right there, but this whole awkward and laborious process stands in our way. It's like all of the fun we could be having is mocking me every day, and if summer would just go away, then I wouldn't feel guilty for not doing more outside. Let me tell you one thing though: when I do get her outside to ride her bike, or swing, or anything else I have mentioned, I am so damn proud of myself. In spite of the fact that a typical child could do five fun things in the time it takes us to do one, I am just happy that we got that one thing done, and Lu had fun.
For example, we did get a little "gardening" done the other day. It was on the deck, and in containers, but we still had a great time doing it! We planted basil, Venus Flytrap seeds, peas, and a Brussels sprout plant that we thought had died, but it came back to life. I helped Lu get her hands right in the dirt and she even had it all over her lap! Yes, Lucy actually getting dirty was one of my favorite parts of the whole thing! And, she also was able to hold the pea seeds in her hand, and then drop them in the trench we made for them while I just supported her arm to keep it steady.
I guess maybe what I'm saying is that there is just so much pressure to have a big freaking blast in the summer, and I've had enough of it for now. We go to the pool every single chance we get, which is most days, and not only does Lu LOVE it, but it is good for her, so that is a thing we can do and I have gotten pretty adept at the process of getting her there and into the water, even if no one is there to help me. The pool is the only thing I will lament about the end of summer. (And getting to go for walks with my Mom in the evening.) I miss it desperately all winter for both Lu and myself because I too love to swim. Anyway, we are at least lucky to have that so easily accessible and lucky that Lu enjoys it and it makes her happy. But, I will still not be sad when the pressure to go outside and have the time of our lives doing super fun and cool summer activities has passed. I guess this year I am a Grinch about summer which probably means I should only allow myself to be half as Grinchy about Christmas this year. Thanks for listening to my whining!