Let's start this off by stating the obvious: there are a lot of hard things about being a parent of a kid with myriad special needs. I don't spend as much time thinking about that as I used to, but every once in a while a particular struggle will bubble to the top of my mind and kind of bob there. I've been mulling this one over for a while now, trying to figure out how to put it in words.
As the parent who is home with Collin all day, I sometimes face a unique set of issues. Many are logistical: How am I supposed to go to the grocery with Collin when I don't have childcare? How can I minimize my lifting of Collin while still keeping him engaged and active? But others are very much mind/heart issues. Am I giving Collin enough free time, or does he need more structured therapy time? Does Collin really know/care that I'm here?
The particular issue I've been thinking through is a strange combination of both. It's something that challenges me deeply and impacts most of the minutes of my day. It is simply the fact that every interaction, every activity, every everything in our entire day is initiated by me.
I read an article once by a mom thinking through why it is so hard to be the mother of one newborn. She explained how draining it was to be home all day, alone but not alone. To have no one to talk to, for each day to be centered around the anticipation of the unspoken needs of another person. It's draining in a way that is different from most other life phases and it is a fairly good picture of what I'm trying to get at here. Except that I have no idea when or whether this phase will ever end for me.
I'm an introvert; I get energized by alone time. But the vast quiet I am filling every day is not the same as alone time. It's an ongoing invitation (that sometimes feels more like expectation) to be the extrovert, to be the energy in my environment. I prefer to listen and respond. But if any words are going to be spoken in a day here, they have to be by me. And they have to be spoken with the knowledge that I will get no answer of any kind.
When I hear other moms of young children talk about the onslaught of questions, the harnessing of 3 (or 4, or 2) year-old energy, I listen not with bitterness or even much sadness (I am thankful to say), but with a kind of bewilderment - like learning about a different culture for the first time. And just like I might imagine what it would be like to live in a Mediterranean fishing village, I wonder what it would feel like to 'have to' chase a toddler or answer a barrage of requests or feel the need to read one of the dozens of pinterest pins on how to distract a preschooler.
When I ask Collin what he wants to do next, what he wants to watch, which toy he'd like to try, it's really a question that I will be answering for him in a few seconds. That answer will come from a guess formed in my own mind based on what I perceive to be Collin's reactions to dozens of other instances in which I also picked what we would do next.
And I'm not always great at it. There are times every day when I realize that I've pooped out on talking and slipped back into doing without saying. I wonder what this must feel like for Collin, who has great hearing but not great vision to help him understand what is going on during those quiet times. So I summon my energy and drag my brain back into the vocal world, trying to engage Collin in the string of daily activities that he is unable to choose whether or not to participate in.
Even when our fabulous helper, Heather, is here working with Collin and interacting with him with her trademark tender enthusiasm, my brain just bumps up to a different, bigger-picture level of constant initiation. Heather and Collin spend their time on a schedule I devised (and continue to revise) to establish some kind of rhythm and structure in Collin's days. I think through his diet based not on what he likes or will want to eat (oh, to have a picky eater!), but on what I think he needs to keep him nutritionally balanced and in proper ketosis. I look for apps that might engage his newly developing fine motor skills, books that might stimulate him visually, crafts that might interest him sensorily.
All of this adds up to an exhausting pressure. If I need to take care of something else, that means Collin is stuck wherever he happens to be. If I choose to sit down and read for a few minutes, that means Collin is either lying by himself on the floor or sitting by himself with a video. Wherever I am and whatever I am doing, I am always wondering what Collin is thinking and whether he needs or wants something different. Should he spend some extra time in the stander today since he's had so many doctors appointments this week? Is he enjoying this app or is he ready for another one? Would he be more comfortable laying on his tummy? And if I decide that he does require a change, it's up to me to make it happen. Because he can't tell me or ask me or do it himself.
Now. Here's the part where I reiterate how beautifully Collin enriches my life and how many kinds of joy he brings me. He is remarkable. I love being his mom. But that doesn't mean it isn't hard. Just like the hardness doesn't make it less awesome.