One of the first challenges we started thinking about addressing with #MightyWoody was clothes. It was a practical area to focus on so that we could stay productive. This may seem trivial and like the least of our worries, but for me, it was all I could think about sometimes. And again, practical and actionable can be really great gifts when you in the midst of grief.
At first, it was simpler because he was small and sleeping all the time and often bundled up anyway so it didn’t matter. But since day one, it was always important to me that he have his right arm accessible so that it would move just as much as his left. (I had horrible visions of his arm not being used and shriveling up. Post-baby hormones are awesome!)
What this meant for the first 6 months was that we were either rolling up his sleeve on that side or cutting them off. And generally, this worked for an infant. We were certainly not the best judge of what the length should be and cut everything like a first grader might, but it got the job done. And it kinda felt good. Like “I’ll show you pesky shirt for two regular arms...watch me with my dangerous scissors attack you.” And fortunately, warmer weather came along and we discovered the beauty of t-shirts.
However, as things progressed in months 10-12, Woody was getting busier, and clothes were getting more frustrating for me and for him. I also started to feel maniacal about the cutting. It was a weird neuroses of “I don’t want to ruin the outfit by cutting off the sleeve” paired with “My kid should not have to run around like a hooligan with cut off sleeves” and finally “Who cares what he is wearing as long as he is happy?! But I am caring and so I'm going to bug you until the sleeve stays rolled up.” This stuff gets engrained in your mind and it is hard to let go of.
I find those questions a little bit absurd now. But at the time, I cared not so much because of how it looked but because I wanted him to feel like there were clothes for him. Like the items he would literally be living his life in didn’t remind him of his difference or exacerbate the challenges at every moment.
There are some clothing companies starting to make adaptive clothing with magnets, zipper alternatives, and access points that support a range of different abilities and needs. This is awesome. Some companies are also starting to use models with limb differences. I haven’t yet found manufactured clothes that accommodate for a limb difference. And I know that eventually if he has a prosthetic when he is older, he won’t need adapted clothing. But because we are waiting for him to want to pursue that - and because we want to encourage his full development and expression of his arm - we have adapted our own.
A few weeks ago I took a giant basket of clothes to Calla Grimes to alter for us. I don’t know why I had been so hesitant to do something like this. Probably denial. But I finally took them. They were all of Al’s clothes plus a few that were gifts to Woody that we expect him to wear over the next 8 months or so. It was a fairly inconsequential thing to do at the outset.
But then the day came when I got to go pick them up. And it was magical. The feeling of calm and okay-ness that came over me after picking up a jacket and pair of pajamas that had been exquisitely adjusted for Woody brought tears to my eyes. Like I had been holding my breath for the past year. It was perhaps one of the first moments since Woody was born that I truly felt like I knew exactly what to do for him. I felt like I belonged to him and that he had taught me something. I was able to put him in a coat that fit him perfectly and watch him play in the driveway with his brother without me chasing after him. It was so normal feeling.
It is small. And yet so huge. I still have so many questions about why and what is yet to come and what he will need. But for now, I feel really good about where we are.
Also, it’s almost t-shirt season.