When I first had my son 4 years ago I had the same fairytale picture of motherhood that most mother’s do. I pictured the playground, and the park. Watching his first play. The first time he got on the school bus. I never anticipated the food intolerances. The frequent infections. I certainly didn’t anticipate the aggression, severe OCD, food restrictions, mitochondrial dysfunction or the crippling anxiety. I never anticipated at 2.5 I would lay awake for hours at night praying that God would give him a voice to where I could finally hear him utter the word “mama” for the first time. I never anticipated that I would be one of THOSE mother’s. We didn’t fit that lifestyle. We were too laid back for supplement and drug regimens, gluten and dairy free diets, clothes that fit just right, and therapy 40 hours a week. I couldn’t search labels for red dye. Up until 4 years ago I woke up every morning and just winged it. I didn’t prepare. I wasn’t THAT kind of woman. I certainly wasn’t prepared to be THAT kind of mother.
When I first had Dexter he would scream for 20 hours a day. He didn’t sleep at night, the “colic” (that word is such a joke) was unbearable. We were all hanging on by a thread. I had a group of friends while I was pregnant that already had kids and they were all healthy. When Dexter was born I drifted a part from them. It was understandable and nobody’s “fault.” When you have a child with special needs, you find that you just start to surround yourself with other special needs families. Because the reality sets in that you are now just THAT kind of family. So It just happens. Perhaps partly because the sight of a “typical” child back then made me angry and depressed because I longed for it so deeply. And perhaps because the mother’s of those children couldn’t even kind of understand what we were going through because fear, anxiety, and despair associated with having a sick child was foreign to them. While irrational, I assume there was probably a feeling of guilt for having typical kids when your friends don’t. I’ve had similar feelings when I would get pregnant and one of my friends or family was dealing with infertility; like why do I deserve this, God and they don’t? As if I was somehow partly to blame. It doesn’t really make a whole lot of sense. When someone’s suffering, they probably need you more than ever. But their kids ate goldfish and drank juice and special diets and sensory defensiveness was like greek to them. I mean, I get it. If you’re not THAT kind of mom and you don’t have THAT kind of kid, I mean, I get it. I really do.
We didn’t fit. And so, we retreated to where we felt comfortable; with our own. Facebook groups that catered to the suffering mom looking for any means to find healing for their complex children became my home, my refuge and lifeline.
Now, 4 years later I’m finding that all those same friends whose first born were typical have at least one child either on the spectrum, or with PANS or ADHD. Actually, I know more children that have developmental delays then don’t. And that’s not just from my new circle of friendships I developed after Dexter was born. Those are my old friends too. The ones I grew up with. The ones who were at my baby shower and who pitied me and Patrick when we got the autism diagnosis. I have very few friends with “typically” developing children. Illness is the new normal. Autism, PANDAS, ADHD, OCD…. It’s all commonplace. What once made my friends shift in their seat in discomfort, have now brought us back together where we stand on familiar ground; parenting the sick child.
As I type this out this morning I’m struck by the fate that awaits the children being born today. We are now THAT type of world where THAT type of child is commonplace. I can’t help but ask myself when will it be enough? When every family has one sick child? I mean, great. We’re almost there now. Maybe now is the time for change. Or do they all need to be ill before we do something about it? By then though, isn’t it too late?
