As summer winds down, we're nearing the end of a blissful hiatus from most of Collin's therapies. It wasn't my choice, I'm sad to say. Therapist vacations and therapy center breaks just aligned favorably and we found ourselves in a 3-week therapy lull. Interestingly (and in large part due to how well Collin does during less busy times), it seems that it is always during these breaks that I end up thinking through things differently. And though the past couple of weeks have been a blur of BiPap troubleshooting, I have still found myself stepping back from the daily minutia and daydreaming on Collin's behalf.
I say 'daydreaming' because this is not the summer I would have chosen for a 3 year-old. With a minimum of one therapy session a day, not including travel time, doctor's appointments, the hours of therapy we do at home, and the 101 trips to the potty Collin takes daily, there wasn't room for much else. He's been swimming at our amazing neighborhood pool no more than a handful of times since it opened. I took him to the zoo yesterday morning for the first time all summer. We had a wonderful time together and Collin interacted more than during any other zoo trip ever. I thought Why don't I do this more often? And I answered myself, Because there is no time for it.
I want Collin to be as independent as possible. I want him to learn to move himself, to eat, to communicate - in whatever way each of those things can come to pass. I want to equip him to have the fullest, richest future possible. That's why we search out the best therapies and commit to them.
But what about the therapeutic benefit of a free, secure childhood? One that is swathed in love and buoyed by creative enthusiasm?
Soon after Collin was diagnosed with Infantile Spasms and my heart and mind were trying to adapt to our new reality, my mom gave me Cushla and Her Books, which she had read in grad school. It's a study of a couple whose daughter (Cushla) was born with significant medical and developmental disabilities and the path they took to giving her the best life possible. (I actually wrote to Cushla herself right from Collin's hospital room and later ended up getting a lovely email from her and her dad. I was star struck.) What I remember most from the book, even more than the huge impact reading had on Cushla's development, was something that happened toward the end. The family decided to leave their home and move somewhere more rural. I remember it being near a body of water. And Cushla flourished. She just took off. I interpreted this to mean that the free, easy lifestyle and the increased time spent outdoors provided an ideal environment for Cushla's development. Her best therapy was spending more quality time simply being a kid.
It makes me think of my own childhood, which I think I can safely call ideal: raised on a farm, surrounded by loving family, very little structure outside of chores and basic rules for safety and respect. I still remember almost viscerally the exhilaration of having a whole morning free to run and swing and 'play pretend' with my sister. Sometimes we just hauled our stuffed animals out under the tree or read books in bed.
And even though Collin is a very different 3 year old than I was, I don't think it is unreasonable for me to want the same childhood for him. Just because he can't run and jump doesn't mean summers shouldn't be golden for him. Just because he can't see well doesn't mean he shouldn't get swept up in the world of books. Just because he needs help with every aspect of his life doesn't mean he shouldn't enjoy the pleasure of simply being.
We've made steps in that direction. I've taken his home therapy routine and wrestled it into something resembling a preschool schedule, in which his eye and hand therapies lead up to an art project or his listening therapies lead up to music time. But even though it brings some purpose and beauty to a long list of tasks, it's still more and more structure. More and more tasks.
I don't have any easy answers. The hard truth is that therapy must be a part of Collin's life, and likely always will be. I should clarify that I am incredibly thankful for all of the therapies we've found, that I love his therapists and the benefits he gets from his time with them. And trust me, I'm very okay with asking him to work hard myself. But I'm reaching the point where I want to think more seriously about the assumption that more therapy is better, no matter how extensive the needs. And I want to be more intentional about creating time in Collin's life for freedom and fun, more space for the plain old magical breathing and growing of childhood.