“Now, I don’t want you to worry. Not yet. These results can mean any number of things.”
When the doctor starts out with “I don’t want you to worry,” the first thing you do is worry.
It has been a year since we got back test results that revealed my son had something wrong – something very wrong – with his autoimmune system.
We went in one evening to an urgent care clinic, thinking the pain in his hip might be a minor injury. We left with a ton of referrals and a ton more questions.
Over the course of the year, he has had four hospital visits and more than 48 prescriptions filled.
Over the course of the year, after first being dismissed by a specialist as being overprotective (why? why does this keep happening to me?) we received not one, but two autoimmune diagnosis. Both don’t go away. Both mean my son, in addition to being on the autism spectrum, has chronic illnesses.
I wish that my son could talk to me about this past year. What it has been like for him – from his perspective. But he just can’t. Putting language around feelings, both the ones in his body and the ones in his heart, is not something he can do yet.
At most, he will nod when asked if he is feeling better. Or he will repeat, “No, I am not going,” when I bring up the next doctor visit (even though we both know at this point, he is going and I will come up with some
bribe incentive, to make it worth his while).
So my son doesn’t speak about his experience. The truth is, I haven’t much either.
These diagnoses feel so heavy. At times, I have found some words. I have been able to open up about little things that happen, to my friends and my husband. It feels good to admit it. This is real. He is actually chronically ill. This isn’t going away.
But most of the time, especially publicly, my vocal cords feel frozen when the topic of my son’s illnesses come up. I can talk about autism, all day long. Autism makes sense to me. Autism is who he is. It fits.
This doesn’t. These illnesses are foreign. They don’t belong here.
But it’s been an entire year, and my throat is starting to unclench a little. My heart no longer feels like it is suffocating under a blanket of dread, when I think of what this means for my son – what this means for me and for my family.
I am learning what it means to be a mother of a chronically ill child.
Being a mother of a chronically ill child means I never really know if I am challenging him enough. It means I never know if I am spoiling him too much. It means I never know if I am pushing him too hard.
Being a mother of a chronically ill child means I had to buy a wheelchair, which was one of the least fun forms of shopping I know. We couldn’t afford more than the most basic model, which frustrated my son to no end. Being unable to move well on your own, and then have to struggle with a janky wheelchair isn’t fun.
Being a mother of a chronically ill child means I am overwhelmed by the love my friends have shown my son and our family. One even found and retrieved a donated, much nicer wheelchair for him. He can now move freely and I can rest my aching back. It is impossible for my friends to know how much they matter, how much they keep me sane in the midst of chronic illness. I see that so much more clearly now.
Being a mother of a chronically ill child means the pharmacist at CVS knows me by sight, and my son by name. She knows all the prescriptions he is taking, without having to check the computer. She says she wants to make sure she doesn’t miss something important. She says he is one of the regulars. She says, “See you soon!” brightly, every time I leave, and we both know she will.
Being a mother of a chronically ill child means I check to see if he is breathing sometimes, in the early morning hours, when he is finally asleep. I used to do the same thing when he was an infant. I slowly grew more confident as a mom, and I stopped when he was around 6 months old. 12 years later, I find I am doing it again.
Being a mother of a chronically ill child means we live our life according to good days and bad days. Good days mean we go places, we learn things, we get stuff done. Bad days mean we settle in, try to relax, stay home, and pray.
Being a mother of a chronically ill child means I have seen my son limping and barely able to walk. It means I have seen my son in intense pain and have not been able to help at all.
Being a mother of a chronically ill child means I am seeing a side of life that I barely knew existed. I see other mommas, in the waiting rooms, at the hospital, on the streets. I see them with their obviously medically fragile children. I really, really see them, and try to smile when I meet their eyes.
Being a mother of a chronically ill child means I have a better understanding of the big picture, of the things that really matter most, of the way I want my son’s days to be. I worry less about him not wanting to cut his hair, his messy room, or his rejecting the dinner I made. Things that used to seem important, now seem minor.
Being a mother of a chronically ill child means I pray a lot. It means I am learning to surrender to this life I have been given. It means I find peace in places I would’ve thought chaotic just a short year ago.
Being a mother of a chronically ill child means I cry, a lot. It means I love, a lot. It means I try harder. I give-up. I lose it. I laugh. I wish I could sleep more. I wear yoga pants more often than I should. I drink more coffee than I should. I cry some more. I enjoy everyday moments so much more.
Being a mother of a chronically ill child, at its core, is really not that different from just plain being a mom. We all worry about our kids. We all struggle with how best to help them. We all wonder how prepared they will be for adulthood. We all do the best we can. We all fail. We all succeed. We all struggle with how to not mess it up. We all pour ourselves out.
Being a mother of a chronically ill child is more about being a mom, than it is about chronic illness.
And that, I know how to do. I have been his mom for 12 years. I’ve got this.