Bensten_Caregiver and Mom_Large

What It's Like to be a Caregiver and a Mom

Author: Jessica Woolwine
Published Date: Monday, February 27, 2017

I am a parent and a caregiver. It’s probably one of the toughest dual roles I play.

The last year has seen quite a few changes in my daughter’s health. A former preemie, Abby’s gross motor skills have always been her “thing” – the thing we work on. She’s fallen several times and, without age-appropriate reflexes, tends to hit her head. This summer she had a VP shunt placed in her brain for hydrocephalus and experienced her first seizure right after Christmas.

Abby requires more from me on a daily basis than her brothers. I get the luxury of just being their mom: making lunches, setting limits and comforting them after a skinned knee. But if Abby falls and skins her “good” knee, the one not affected by her cerebral palsy, we might as well RSVP “no” to the rest of the day. She just needs more.

Let me explain the difference. One of our favorite things to do together is shopping at Target.

(You know what I’m talking about!)

Abs and I roll in, hit that popcorn stand and pick through those “dollar” bins in the front of the store for things we don’t need but are just too cute. As her mom, I would love to let her out of the cart to explore on her own. As her caregiver, I know one slip on a notepad that’s fallen on the floor, and we’re calling 911. She stays in the cart.

We head to the shoe section. She tells me what she likes for me, and I tell her she has fabulous taste. I can barely go to the girls’ shoe section without wanting to cry. All the sparkles and princess shoes she wants just don’t work with her brace. She wears a size 9 on her right foot and a 12 on the left. I have to buy two sets of shoes for her to get one pair. Even if the shoes do fit, if they don’t have a good grip on the bottom, the risk of her falling is too high. By the time we get what she needs, I’m sweating and wishing Target served wine.

When we make it to the toy section, she wants a bike, a skateboard and a scooter like her older brother. But she can’t ride them, might not ever without giving me a heart attack. She wants a Frozen helmet but it won’t fit her head. Because of her hydrocephalus, her head’s grown too large for even some adult bike helmets.

But, we still sit them on our heads and giggle. Who made these tiny helmets? We move on.

Do you see what I mean?

Being a mom caregiver means I get the privilege of making her world feel full … of potential, love and promise. Somehow that has to happen while I am on high alert. The balance can be wearisome, but I wouldn’t trade life with her for the world.

About Jessica Woolwine

Jessica Woolwine is a native of Hampton Roads and lives in Hampton with her three “miracles” Jackson (9), Abby (5) and Henry (1). As a mother to a childhood cancer survivor and a micro-preemie, she began the blog Mothering Miracles in 2014 to support other families dealing with health issues. Jessica also works as Creative Director for Rubin Communications Group and enjoys mixing her talents for graphic design and creative writing with community relations. She is a past member of both the CHKD Family Advisory Council and the CHKD NICU Family Advisory Council.