What I Wish I Knew on My Hardest Day as a Special Needs Mom


As parents, we have good days and bad days. And then we have our hardest days.

My hardest day came in the summer of 2009.

My 3-year-old daughter and I had just returned from a disastrous trip to Walmart. She spent the entire trip tearing clothing from the store’s racks, pulling my hair, startling fellow shoppers with random screams and reaching into the purses of anyone walking by our shopping cart. At checkout, she threw everything she could reach and then spilled my purse onto the floor. As I scooped my belongings back into my bag, one lady decided to scold me for my child’s out-of-control behavior. “You need to tame that kid,” she snarled. “Or someone’s going to do it for you.”

When we got home, my daughter dumped her crayons out onto the floor and broke them. When she refused to clean them up, my patience evaporated entirely. I screamed at her for acting up at the store, for making a mess at home. I sternly put her in her crib, yelled at her to take a nap, and slammed the door as I stormed out of her room.

My daughter burst into tears. I joined her with my own sad sobs.

No one knew the cause of my daughter’s behavior, nor how to address it. She let loose with ear-piercing screams roughly a million times every day. She refused to wear her leg braces and wouldn’t take more than a few steps before reverting to a crawl or demanding to be carried. She had difficulty communicating because her speech was delayed, so our days were often filled with meltdowns. Doctors diagnosed her with failure to thrive and questioned whether or not I drank during my pregnancy. They said she would never walk unassisted, never talk, never be able to function independently.

She hit, bit, pulled hair and head-butted me constantly, and her aggressive behavior wasn’t limited to me. The babysitter I’d most recently hired quit when my daughter bit her son hard enough to break the skin. My job was on the line for lack of child care.

Again.

When my mom came home on my hardest day, I told her how disappointed I was. I wasn’t supposed to live with my mom at my age, but dropping out of college and leaving my daughter’s father left me with few options.

I wasn’t supposed to be a 26-year-old single mother.

But I was.

I was exhausted and frustrated. My daughter has 9p deletion syndrome, but I didn’t know that on my hardest day. The genetic tests needed to detect small deletions like hers didn’t exist yet. All I knew that day was that everything was falling apart. Something was “wrong,” and I didn’t think I could handle it. I felt so hopeless, back then.

How could I have known back then that I would come to accept my daughter for who she is, exactly as she is, once I let go of my preconceived notions of parenthood? That eventually, my daughter would defy the odds and learn to walk unassisted and even manage to jump and jog on her good days? That she would learn to read sight words, write simple sentences and calculate math problems? That her amazingly cheerful personality and joyful approach to life would fill me with happiness and brighten the lives of everyone she meets?

How could I have known that I would meet a wonderful man and that he would work hard to help my daughter be the best she can be? To help me be the best I can be? That he would become my husband and adopt my daughter? That she would gain a brother and a sister when a judge granted my husband custody of his children? That my stepchildren would be diagnosed with mental disorders and that my daughter’s loving personality would help us get through our family’s hard days?

How could I have known I would stop thinking of her challenges as though they were the end of the world? That today I would regard them as mere bumps in the road that might be overcome with some hard work? That I would accept the issues that can’t be overcome with empathy and understanding instead of self-pity and depression?

Last night, I looked at my daughter and I was so consumed with love I nearly burst. I cannot believe that at one point in my life I actually second-guessed becoming a mother when I ran into unexpected difficulties in raising my daughter. My face gets hot with remorse just thinking about it.

So why did I write this? Why did I decide to share this awful moment with the world?

I wrote this because I felt so alone on my hardest day, and I want to tell parents who are having their hardest days: You’re not a monster for feeling hopeless. You’re not alone. One way or another, we all get through this parenting thing. Don’t give up. Things may turn around in unexpectedly wonderful ways.

And you wouldn’t want to miss that, now, would you?

two women and young girl

Follow this journey on Trauma Mama Drama.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


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