The Harder Days of Being a Special Needs Mom

The other day I found myself getting angry, frustrated, and even sad at a parenting article I read in a magazine.

The funny thing is, it wasn’t a piece on the pros and cons of feeding your kid sugar, whether I’m a good or bad mother because I stay home, or whether my youngest child is forever damaged because I bottle fed him but nursed his older brother and sister.

No, it wasn’t on any of the million of hot button issues that can make parenting blogs go crazy and garner a ton of media attention.

The piece in question was a very simple and straightforward article aimed at new moms about some of the hardest times a parent can go through.

Times like the first time your precious child says, I hate you, is sad because nobody wants to play with them, or says they like daddy better.

One I clearly remember: the day another toddler bit my firstborn, or equally etched in my memory, the day my sweet, perfect child, hit his best friend.

These were all days I remember crying and being in need of sympathy from my mom friends and a piece or two of chocolate.

No, I was sad, angry, jealous, and I admit it, feeling more than a bit sorry for myself, because while those days were hard and painful as a new mom, they can’t hold a candle to some of the other days I have experienced as a mom to a child with significant special needs.

There was a day I prayed the earth would swallow me up because a doctor was telling me my then two-year-old daughter’s MRI showed significant brain damage, or the endless nights where she would scream at an ungodly pitch and thrash around not quite sleeping but not awake either. Not one doctor could tell me why.

There were endless tests, appointments with specialists, meetings with a variety of therapists and teachers. There were looks of concern and even pity from professionals, friends, and family.

There was the day I realized that despite all the amazing medical care, teachers and therapies my daughter received and continues to receive, she will never lead anything remotely close to the normal life I had always assumed she would be able live.

When you have a child with significant special needs, a life-threatening condition, or a serious illness, your parenting experience is forever altered and you are changed.

I am not the same naive young mom who thought she could solve any problem that came her way. I know better.

I have been the mother in the room with the kid who has the most issues, and I have been the mother in the room with parents who wish their child was as healthy or could do what Lizzy can do.

I know bad things can happen to me and to people I love. I no longer think I’m immune to the worst life can dish out.

Most days I am OK with that. In fact, I find the strength that I have found and the knowledge that I can handle anything extremely empowering.

I cherish the good days we have with Lizzy and the family we have created.

There are little things I’ve learned to ignore. Things such as what someone thinks of me or whether I said the wrong thing to my neighbor don’t hold nearly the power that they once did. I am more forgiving of myself and of others.

And I laugh. A lot.

Then there are the days when I wish I didn’t have to be so strong. When I wasn’t the person her teacher calls to inform me of a new, never-seen-from-her-before behavior that has her team concerned.

There are days I want to just scream at the top of my lungs that I have had enough, and I feel as if I will never survive the daunting task of raising such a special and complicated child.

There are days when my friends’ and families’ reassurances that I’m such a good mother and that God or Lizzy picked me for a reason leave me wanting to use every four letter word I know on a person whose only crime is trying to make me feel better.

There are times when I wish that parenting my beautiful daughter didn’t present such a complex range of problems that don’t have easy solutions.

Thankfully those days don’t last very long.

 

This piece was first published on the Dishwasher, June 30, 2013, under the title, “When Mom Learns to Grow Up.” It has been edited.