Please Don’t Call Me a Saint Because My Daughter has Special Needs

“Kathy you’re a saint.”

My head snapped up to find my sister’s friend Amy giving me a look that was mixed with awe, pity, and kindness. I was in the middle of helping my then seven-year-old daughter, who has significant special needs, butter her roll while we ate lunch at my nephew’s christening.

Lizzy looked adorable in her new pink dress from the American Girl catalog. The doll she held was in a matching pink dress. She’d gotten a manicure the day before and was very pleased with the way she looked. No detail had been missed. I wanted her to look and feel like every other girl at the party.   

I didn’t know how to respond to Amy’s comment. So I did what I thought someone really deserving of the S word would do, I smiled and said thank you.   

Now safely back in our minivan headed home, her words lingered in my mind. I turned to my Catholic husband who was driving. “You have to be dead to be a saint? Right?”

I was raised Lutheran, and Joe was accustomed to my questions about his religion. Laughing he said, “Yes, you will need to die first before anyone makes you a saint. Who wants to canonize you?”

“Wendy’s friend from college, Amy. You know, the one whose first two kids were born within days of Tom and Lizzy. And then she had a third a year before Peter was born.”

“She has a new baby, too, right?”

“Yes.”

We both started hysterically laughing. The fact that a woman with four kids, 10, 7, 5 and an infant, thought I was worthy of canonization summed up my day and my life perfectly.

Though Lizzy was seven, intellectually and emotionally she had much more in common with a child of three or four. In the eight years since my nephew’s christening, her learning and emotional development has progressed marginally, even though she’s now 15 and towers over me at five-foot-eight inches tall.

Lizzy is able to speak, but her words don’t always follow the conventional patterns of speech. To the untrained ear, she can sometimes sound as if she’s speaking gibberish. But not to me.

I’ve always had the “Mommy Superpower” of being able to understand her.

During the party, while we were all sitting and enjoying our meal, Lizzy started to get upset and said in a loud voice, “The princess butterfly wants a flower.” I knew she meant, “I want a piece of bread, and I want it on the plate with the pink flower on it. Now!”

I smiled and handed her the bread, thrilled that she could tell me what she wanted. This was real progress. The medication she’d just started taking was really helping control some of her most challenging behaviors. Before the medicine, we’d stopped going out as a family, because we never knew when she would just lose it. I was so nervous that she wouldn’t be able to handle this event. And here she was, doing great.

I happily took care of Lizzy as I continued to eat and talk to Amy, who was multi-tasking, feeding her infant, while at the same time keeping her eye on her other children. It felt good to be with another mother who seemed as crazed and busy as I was. I felt more like a typical mom and less like a special needs one.

Which is why I was caught off guard when Amy gave me the lofty title.

It wasn’t the first time somebody called me a saint because of my daughter’s special needs, nor would it be the last. But that day it stung.

Reality smacked me right in the face. Even with Lizzy on her best behavior, it was more than obvious that she had significant issues. The medicine was helping, yes, but it wasn’t the miracle I’d been praying for.

My daughter was different than the other girls at the party. And that made me different too.

According to Webster’s, a saint is a holy person chosen by God.

I didn’t feel holy or chosen by God that day as I loved and enjoyed my daughter, anymore than I do when I start singing, Nobody Knows the Troubles I’ve Seen, very loud and very badly, to help me from completely losing it, because Lizzy has just used my brand new lipstick to decorate herself and the bathroom.

I didn’t feel like a saint yesterday, when I just wanted to continue brushing my teeth and pretend I didn’t hear my daughter screaming a string of nonsense words from her bedroom across the hall.  

I didn’t want to go in her room and deal with her latest “crisis.” And I didn’t want to be the only one who could figure out that she was so upset because she couldn’t find her favorite pajamas. Though my heart did swell a bit when she looked up at me with her big brown eyes and said, “I’m sorry I screamed, mommy.”

I’m not a saint. Not even close. Nor does my daughter need one.

What she does need is her mom. A flawed woman who finds humor in the messes of biblical proportions she confronts almost daily and beauty in her daughter’s accomplishments, no matter how insignificant to the rest of the world. I’m totally in love with my daughter, and mom is one title I gladly accept.

 

 

 

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