My Daughter and I: the Day to Day Reality of Raising a Child With Special Needs

Today my daughter and I used a birthday gift card from her godfather to the hair-accessory-jewelry-everything-a-pink-loving-girl-could-possibly-want store, Claire’s.

As Lizzy and I managed our way through the racks of headbands with flowers, gems, and bows, I got very anxious. All Lizzy wanted to do was be left alone to pick out what she wanted. That’s a very normal thing for a 15-year-old girl, but Lizzy isn’t a typical 15-year-old.

My beautiful daughter has significant special needs, and her condition wreaks havoc on all aspects of her development. Cognitively she has more in common with a child of three or four than the five-foot-eight teenager that hovers over me.

As Lizzy stopped to look and touch the sea of pink and sparkly merchandise, I followed close on her heels, saying, “Look, don’t touch,” “Stay with me,” and “Don’t run off.” I was conscious of the other shoppers staring at us, and though I have learned to accept the looks, sometimes kind, sometimes not, today they bothered me.

My princess is not a cute little girl anymore. As she made her way to the back of the store to look at some tiaras, she nearly bumped into a young woman. The girl turned to say, excuse me miss, and was bothered when Lizzy didn’t respond. I was quick to apologize, but the girl was not at all impressed and gave us both a rude look. I usually go out of my way to be kind and offer a quick explanation, but the other shopper didn’t look like she wanted one. To be honest, I didn’t feel like giving it.

As we continued to make our way through the sea of glitter and sparkles, I developed a bad case of self pity. Choruses of, “why me?” and “why my daughter?” started to fill my head. Then the anxiety really started to kick in. I’m 51 and all of five foot three. Lizzy has a good five inches on me. It’s getting harder and harder to physically manage her. What am I going to do in 10 years? How will I deal with her then?

With these fears fresh in my head, I helped my daughter gather up her purchases and brought them to the counter. The salesperson rung us up and out we went.

As we were walking to the bagel shop to meet my husband and son, I glanced at our reflections in one of the shop windows. I saw an overweight, middle-aged woman standing next to a beautiful young girl. I was stressed out and tired. The mom who always enjoyed spending time with all three of her kids seemed so far away from the woman I saw in that window.

I opened the door and saw Joe and Peter who were waving to us both. I settled Lizzy down and got her a drink.

As I made my way to our table, I noticed a younger woman with a boy of about four or five. It was like seeing my younger, more carefree mom days. It took me back to a time when life seemed a little simpler. The mom was giggling and laughing with her child. She looked joyful and I smiled at her.

I looked over to Lizzy as she was putting a piece of her brother’s cookie in her mouth and laughed. Joe and Peter wanted to see what she bought. I put one of the pretty headbands on her head, the one with pink flowers and pearls that she picked out herself. As soon as I put it on her, she gave me one of her winning smiles.

“I look beautiful.”

“Yes you do.”

As I watched my husband and son make a fuss over her, the self pity I was feeling started to melt away. The fears were still there, but I realized, in all my panicking about the future, I forget something: just how much I love my daughter.

Sitting at the table, watching Lizzy smiling at me with her new headband on, I remembered that we both have gotten through the last 15 years by just taking one day, sometimes one minute, at a time. Looking at my family I realized, I’m far from alone.

By the time we left the bagel shop, my mood had lifted and I was laughing. I cleaned up the mess my charming, albeit very messy daughter made and realized someone was smiling at me. It was the young mom with her young son.

 

 

On May 6th, I, along with 12 other amazing writers will be in the New York City cast of Listen to Your Mother. If you live nearby or will be visiting the area I would love to see you in the audience. You can get your tickets here.