I Used to Be a Special Needs Mommy

One of the smartest people I know – now a judge, but first a mother – once told me that you’re only as happy as your least happy child. She told me this when I myself was a new mother of less than a few months, waist high in dirty diapers, developmentally-appropriate crib toys, empty vats of Nutramigen and Mylicon – and one screaming, colicky infant who wouldn’t look at me. I only vaguely grasped her point – possibly because I was pathologically sleep-deprived, but more likely because I was new at mothering. Her children were at that time in their teens, seemingly independent and self-sufficient, and she was far from frazzled. In short, they had it together.

I did not have it together.

I was miserable because my kid was miserable. And while I couldn’t really figure out why he was miserable, I figured it was because I was already a failure as a mother.

Why wouldn’t he stop crying? Why wouldn’t he sleep? Why wouldn’t he laugh? Why didn’t he look like the doughy, cooing Gerber commercial infants? What was wrong with us?

Nothing was wrong with us. Well, let me rephrase that. My infant son was brain damaged which, although certainly not ideal for him, was neither his fault nor my fault, and certainly not wrong. Just reality. What was wrong was that no doctor wanted to commit to telling me this outright, and instead offered me an endless runaround of false hopes, red herrings, rabbit holes to jump into and, worst of all, unrealistic expectations.

We didn’t have to be as miserable as we were.

I wasn’t a young mother. I was 30 years old. I was a college-educated registered nurse. I wanted to know the truth. The truth would have made a lot more sense than a whole lot of gobbledygook and reading between the lines which prevailed in our lives; that is, until I finally took control of how the information we actually did receive was processed and put to use. More importantly, though, the truth would have better served my son had it been imparted much sooner.

He would have been happier, I’m sure, having a mother well-equipped to saddle up and ride confidently into the rocky, maze-like corral of special needs parenting.

Unlike the square and rectangle, every special needs mother is a mother and vice versa. Every mother has special needs parenting potential. If you’re a good mommy, you adapt. Even with my so-called “normally-developing” child, there are moments my special needs experiences have proven invaluable in guiding my parenting. This is why I am now so emphatic in my belief that early and accurate information, appropriate tools to adapt, and the support to get things accomplished for your children are essentials. In the long run, it saves so much time, wasted energy and effort, and can only benefit your child immensely.

Today, over thirteen years later, I look at some of the mothers just out of the gate into special needs mothering – of mothering, in general – and wonder if they will have to reinvent the wheel like I did so often. I hope not. But I bet they will. Because many of the other special needs parents are too overwhelmed, too mired in their own children’s complicated journeys, and frankly too exhausted to lead the way. The internet has certainly helped bridge that gap, for sure. But I know there are still isolated parents out there, blaming themselves, not knowing where to turn, and feeling inadequate. My mommy sense tells me this.

Heartbreakingly, my son died. After that immense loss, I began to half-jokingly (because that’s my way of coping) say, “Hey, I used to be a special needs mommy.” Although I am still blessed with another son whom I adore, admire, and love beyond all words, I am still plagued by many of those same feelings I described earlier. I’m still only as happy as my least happy child – who isn’t here anymore. And so, deep down, I continue to imagine there must be something wrong with us.

What I’ve learned only recently to do is turn it around. Instead, I say to myself he must be overjoyed in heaven, with God, filled with bliss and love, and looking over us – yes, missing us – but so elated to walk, jump, dance, play, and speak that he is, in the truest sense, happy. If I can only be as happy as that “least” happy of children, things aren’t so bad, are they? All special needs parents – given the right tools – can raise the happiest of children, whatever the circumstances.

Yes, I used to be a special needs mommy. And I hope I still am.