I'm Parenting a Child With a Rare Disease – and I'm Done With the Mom Guilt

Monday, October 24, 2019 began like a typical morning for us with the exception of saying goodbye to my active duty husband at 0500.

Our little one had occupational therapy and speech therapy like any other Monday. And like most therapy days, I ran to our nearest convenient store after the sessions to grab some baby pouches.

I sat our big boy in his new booster seat with a banana and juice, then I started to tend to the dishes. Our little guy is usually great at the table so I didn’t have to worry.

I was halfway done with emptying the dishwasher when I heard it — a loud bang. It startled me and I jumped. My worst fears happened, he fell backwards in a bar style seat.

He didn’t cry at first, I’m sure because of the shock, and a few seconds later he began to scream. Not his normal cries of hurt, excruciating screams. I consoled him for five minutes and still he was screaming — I knew it was time to gather our things and head to the hospital.

I grabbed the diaper bag, snacks, almond milk (he has a milk allergy) and bottle and headed to the car.

I strapped him in his car seat where he was still inconsolable.

I rounded to the driver’s seat and decided to call 911 instead, and I’m so thankful I did.

The EMS arrived a short minute later and I explained what happened and his medical history. They brought us into the truck to take vitals and I sat him on my lap. At first he was irritated with the poking and prodding, but then he seemingly calmed down against my chest.

The tech was talking to him but he didn’t move an inch. I thought maybe he finally calmed down and didn’t seem bothered. And then the tech asked me:

“Is this normal for him?”

I looked down at him and saw him just staring, eyes twitching and drool dripping on the side of his mouth. It wasn’t normal at all, he was having his first seizure.

I was already upset with the situation but the seizure put me over. I became hysterical. I continued to cry and blame myself.

I called my husband, who was half way to Florida for a training assignment, and tried to tell him in between hysterics and tears. Next I called our neighbor to pick up our oldest son from the bus stop in case I wouldn’t be able to get him.

On the trip to our nearest Trauma Center I couldn’t stop crying and blaming myself.

What if I was not doing the dishes? Would he have fallen?

What if I had taken him out of the booster seat?

What if I was just not doing the dishes?

What if?

What if?

What if?

I started to tell myself and everyone that could hear me, “I’m such a terrible mother.”

I continued to carry this guilt throughout our stay at the Trauma Center. They conducted blood work and a CT scan and thank goodness everything was clear.

I wish it alleviated my guilt.

I was so ashamed of the situation I almost didn’t share it with family and friends… I decided to share a post on my Instagram of our horrifying day and braced myself.

You know what happened?

Nothing but love and support flooded in — the opposite of what I expected to happen.

“Give yourself the same grace,” one person said.

“This could’ve easily happened to any of us!” said another.

Then it dawned to me: I need to let go of this guilt and stop berating myself with these thoughts.

If you find yourself holding onto mom guilt for being too strict, for working, for feeding your child chicken nuggets every night or your child fell and got hurt on your watch: stop it right now.

Give yourself a hug, we are all doing our best. This mommy gig isn’t easy!