Additional Needs

As special needs parents, we carry a lot

Posted by Melissa Schlemmer on 24th June 2019 Additional Needs, Advice & Support, Disabilities

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Our bags and purses are full. We have to carry formula, syringes, medication, diapers, emergency protocols, datebooks, diapers and wipes, extra clothes, medical supplies, and more.

I know that at any given time I can fish around my backpack and find an extra g button, water flush, and drool bib. I can also locate some hand sanitizer or skin cream if necessary.

Not only are our bags full but our car is full too. We keep extra supplies along with our child’s wheels in the trunk of the car.

We have toys, books, and other “just in case” items strewn about our cars as well. I’ve learned my lesson and always keep a small amount of cash in the glove compartment in the event I forget my wallet, and have to pay for parking at an appointment for our son with change from the cupholders.

We have to carry a lot. It’s never easy to leave the house.

But what’s even harder is going to bed and unloading our shoulders.

First we have to take off the worry. Did I make the right decision? Did I do enough today? Did I do too much? Did I spend enough time working on his strength or his fine motor or his communication? Did I spend enough time just being “mom” instead of nurse or therapist? Am I honoring his wants and needs?

The worries take awhile to take off.

Then there’s the fear. What if?

What if he’s coming down with a cold? Should I have taken him to the busy fair or park or museum where the germs are everywhere? Will I regret the choices I made today? What if he never says a single word or walks? Or much worse, what if we lose him?

The fears are really hard to unload.

Let’s not forget grief and sadness.

Grief of seeing other children doing the things you wish your child was able to do. Grief of knowing your life is not what you imagined. The sadness of watching your child struggle daily to do a simple task or activity. Sadness knowing there are countless things your child will not do in life.

Somedays sadness doesn’t like to come off either.

There’s more, depending on the day. Jealousy, anger, frustration, and loneliness.

Unloading the things we carry can be difficult. And sometimes we carry it around so long that it just becomes part of who we are.

There are extras we carry too. These are the most important, the ones I try to load up on when I wake.

Every morning I walk to our son’s room to pick up his 35 pound body and carry him downstairs, and with each step I can feel it.

As I make my way down the hall and down the stairs I start carrying more than just him.

I carry gratitude.

I hold on tightly to joy.

I love deeper than I ever thought possible.

I am forever proud of who he is and who he shaped me to be.

I hope.

We carry a lot. Yes, there’s a lot we’d like to unload as parents of children with special needs, plenty beautiful but there’s extras we gladly carry.