On Loving, Raging, and Repairing

By Guest Blogger, Brittany Gummere

This was my daughter at 1:30 this morning... wide awake. After seven hours of trying to get her to sleep, I finally called the doctor and asked to stop the EEG. My daughter’s brain activity is worse with sleep, and she was literally not going to sleep... so, I called it. When the Neuro tech came in to remove my daughter’s leads, she looked at me and said, “Man, Mama - you put up a heckuva fight!”

I did two rounds of sleep meds, one round of Benadryl, a urine cath, diaper changes... I was patient Mama, kind Mama, “I swear to gawdddd if you don’t sleep, I’m gonna lose it” Mama, ignoring Mama, and doting and cuddling Mama. At one point I flipped on the lights and said, “Welp, if you want to be awake, let’s be awake!”

And she smiled at me. We did this on repeat for seven hours straight.

I’m disappointed I put my daughter (and myself) at risk to not even get a complete study, but I’m proud of myself for trying everything and for raising such a spirited girl that gives me a run for my money. Every time she got sassy with me, I felt bad for my parents and for my husband. I’m a force to be reckoned with, and she absolutely is my mini-me. I guess I had it coming…

At one point, my daughter yelled at me, and I said, “You know what? I’m mad too!” Yes, I love her spirit and her feistiness, but this procedure could have gone more smoothly if she could have told me what was up. Was she acting like a typical child, stalling at bedtime? Were the leads pulling at baby hairs so painfully that she couldn’t sit still or think straight? Was she just totally happy that she and I were hanging out? Was she scared of being back in the hospital?

My daughter is nonverbal, so I have no idea.

And so I was angry. Not necessarily at her, but angry we had to be there, angry she couldn’t tell me, angry at her lot in life. We made it through, but I hate feeling that way, especially around my daughter.

It’s not a space I live in very often.

My daughter lives with Phelan-McDermid Syndrome and a 7q Duplication. I’m spoiled in a sense because living with her is like 50 First Dates. Every day is a brand-new start. She greets me with enthusiasm and affection, nary a thought from the day before, no matter how frustrating or negative or hurtful it was. But I remember, and I carry it, and I am the only one responsible for repair.

Repair with and for my daughter looks different. I’d give anything to be able to sit and discuss our feelings, for me to apologize and have her receive it, and for us to move forward together. But just like she can’t tell me what’s wrong with words, I cannot repair with them. So tonight we cuddled, and my daughter got a long bath. I did a little lotion therapy massage and held her as she fell asleep. As she fell asleep, I told her I was sorry and that I wouldn’t have been able to sleep either. I told her that Mama is human and loves her very much... so much it hurts.

And then I told her tomorrow is a new day, and we will face it together.

Being in the infant stage of parenthood for almost seven years is exhausting. My daughter’s body is getting bigger, her needs list getting longer. It’s an awful lot to regulate some days, but we will figure it out. We love, we rage, we repair, and we move forward together.