Growing Up

you age as a mother too

Micah and I sat shoulder to shoulder, because he’s now big enough for us to sit shoulder to shoulder. We were on the vinyl bench that stretched the length of the exam room wall at the pediatrician’s office. It was a Wednesday, right after school. He had stood and breathed deep and opened his mouth wide before sitting beside me again. Nothing unusual; after all, it was just a checkup for some medicine that he takes. Because our world is a tiny speck, like an ant in a meadow, our doctor is from the town right next to where we used to live in Kentucky. We paused for a moment to chat about his daughters, and, at the end of the conversation, he casually and humbly said, “They’re so smart.” Then he finished, “We’re very lucky.” 

My mouth dropped open. In my mind, at least—outwardly I’m very trained in manners. But inside, I wanted to respond, “And I’m not, I suppose?” 

I shared this with my husband later and he said, “you know he didn’t mean that….” And he’s right. I know that the doctor meant no such thing. He was not trying to imply that I was less lucky because the child sitting shoulder to shoulder with me is not “smart” by anyone’s standards. I know that it was an expression of humility, thoughtlessly tossed out. It was an acknowledgement that he had nothing to do with the intelligence of his daughters. And still, I could have only felt more like throwing something against the wall if he had substituted the word “blessed” for “lucky.”

The very next day, I sat in my van in the morning listening to an IEP meeting on my phone. I had my video turned off—most people did besides my husband—which left me free to not monitor my face. For those of you who don’t know, an IEP meeting is a meeting for a child’s individualized education plan; parents and teachers and specialists outline measures that will be taken when ordinary education does not accommodate what your child needs. Micah is in the adaptive program at school, a life skills program that focuses less on reading for the sake of digesting large tomes and more on reading as sign literacy. Can he recognize public safety signs? Can he write our address? The meeting went well; it was successful by any way of looking at it. And still, in it, I listened to teachers talks about how Micah is mostly able to do some kindergarten work. If he feels like it. On a good day. We discussed how long Micah can stay in the public school system (until he’s 21), what his next steps could be (there are great options), and how he will begin coming to his IEP meetings next year so that he starts to understand his disabilities (which are extensive). 

The next Wednesday, I picked Micah up from school before lunch and we used the gps to find an unfamiliar building across town. We sat down in a dim office with poorly-chosen and poorly-sized decorations and started answering a series of questions. We were here because we have started to think about what happens when Micah turns eighteen. There are steps we have to take in order to care for him then, and this was step number one: get him on a medicaid waitlist. He needed to meet two out of eight sets of criteria to qualify for the waitlist. Of course, “meet” in this instance really meant “fail.” He needed to fail competency in 2 areas in order to qualify for the waitlist. He counted paperclips. He attempted to write ten words—what he wrote was actually just letters. Some of them were backward. He confidently named and counted change incorrectly. I told a perfect stranger that, yes, I helped him brush his teeth and shower, but that he could dress and feed himself. There are other things I didn’t tell her. I won’t tell you either. Instead of meeting two sets of criteria, he met seven. 

These experiences one after the other have left me considering running until I collapse. I’ve learned some people fall inward and cry and then feel better. I simmer and feel like imploding unless I can get it out. I live every day with Micah and I do not spend much time focusing on the things he cannot do. These tests are accurate, sure. He does some kindergarten level work at school, if he feels like cooperating. I do help him brush his teeth. He cannot be left in a bathroom unsupervised. But they are not his whole story. He is a great storyteller. He loves babies and small children. Being outside makes him happy and art helps him feel whole. We sing “Jesus Loves Me” every night and he has the best laugh. He prayed before bed the other night and ended his prayer with “goodnight, God.” He’s surrounded by friends and people who care about him and that’s more than many get from life. 

As much joy as I have in him, as much as I will celebrate every millimeter of progress he makes, I’ve felt deep grief lately as well. Grief over the man he will never be. Grief over what our family might have been. Grief over who I would be without the weight I carry, though I also know I am a completely different person in many good ways because of who he is. I’m afraid the grief makes me ungrateful. I’m not ungrateful. I can’t believe he’s here, that he can ride a bike, that he can talk. He didn’t talk until he was four, almost five. I can’t believe that he hasn’t been in the hospital since 2019 and I’m sure that I’ve jinxed it by typing that even though I don’t actually believe in jinxing anything. I spend evenings questioning what having a brother with disabilities has done to our other children and praying that they grow compassionate and caring, that they can make space for Micah in their lives. I wonder if he would have a better life if he had a better mom, if I’m part of the problem. I worry about what happens to him when something happens to one of us. How will he not shatter when his grandparents die? What will life look like when he is older? How will I go to ball games and other events with our other boys and still be home to put him in bed before his medicine wears off? How will I survive if something happens to him? What if I’ve braced myself for something to happen to him and instead something happens to one of his brothers? 

I don’t have answers. There is no handbook for children, much less a child with a rare disease, intellectual disabilities, autism, and ADHD. There is only naming and noticing. There is gratitude and grief. There is the beauty of life and the terror of life tied up in the skin and bones of a person that has been made from my own flesh. When I imagine myself succumbing to the terror that life might hold, I see myself sinking, motionless under water. I shake the image out of my mind and get up to do the day again.