I’m Not the Mother I Was ‘Supposed to Be’


I used to think I would be the mom at the playground sitting on the bench casually chatting with other moms. I envisioned myself holding my coffee talking about planning playdates and new Pinterest crafts. The other mothers and I would laugh and talk about the silly things our children did while calling out to them to remember to take turns going down the slide. We would share recipes for our picky eaters and talk about our plans for family vacations to the Bahamas. My kids and I would skip to the car hand-in-hand when the day was done, grinning from ear to ear.

We all have our own thoughts of what motherhood is supposed to be like. We all had a vision of what we wanted to be when we became guardians of amazing little people. I know what I wanted. And I know that what I wanted was not what I got. The second child I had planned in my head while carrying my first was not the child I was blessed with. He needed a different kind of mom.

My definition of what a mother was “supposed” to be had to change. I already had an older son so I thought I already knew about motherhood. I kissed boo-boos, read bedtime stories and knew a love beyond measure. I captured every “first” in a photo (or 50) and thought bath time giggles with foamy bubbles were completely adorable. I remember praying and thanking God for my extremely healthy child.

Our second child was born with congenital disorder of glycosylation type 1a (now known as PMM2-CDG), a rare genetic disorder that scared us immensely. Although we didn’t have an official diagnosis until he was 9 months old, a part of me knew from the start that he was special. When he was 8 weeks old we had to call an ambulance after I found him barely breathing in the middle of the night. The emergency room doctor looked at us and told my husband and me that he was close to death. That’s when I knew he needed a new kind of mother. He required a fierce mom. He required more than a boo-boo-kisser and playdate planner. I knew he needed me to change my definition.

I changed. I will fight for my child to do something other parents take for granted, things I took for granted with our first son. I look back at the bath time photos with our older son and never realized how truly amazing those are. What I wouldn’t give to see our little guy sitting in a tub full of bubbles with a cup on his head! My eyes well up with tears at the thought of hearing his squeals as he splashes around. He’s getting close to 3 years old and still cannot sit unassisted and only occasionally makes a purposeful splash of water in the bathtub.

My life is not sitting on park benches and catching up with other mothers. My days are spent blending food, checking blood sugar and timing bolus feedings. My afternoons are spent at speech, physical and occupational therapy appointments with one of many specialists sprinkled throughout the month. Our house is filled with special equipment to help our son gain strength to someday sit and stand. He has tiny supra malleolar orthotics (SMOs) and a “super suit” that looks like Spanx on steroids. My evenings are time for research about the next super food or alternative therapies while trying to fundraise to get our son the things he needs that insurance won’t cover. My night is spent setting his pump and refilling his feed bag with a blood sugar check in the mix. I am not what I thought I would be.

My definition of motherhood changed. I am still the mother who reads bedtime stories and colors with sidewalk chalk. I’m still a mother who loves beyond measure, but this mother is fierce.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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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