wearing my special needs mama badge like a snug pair of jeans

Let me start with an apology to our male readers: I have absolutely no idea if this post will leave you confused or if you’ll relate or if you’ll worry that my next topic will be about visiting the ObGyn.

(don’t worry. it won’t.)

But this week a friend has been on my mind, a friend who is just beginning to realize that she is now that special needs mama she never planned to be. As I prayed for her family and then kept finding my mind wandering back to them as I went about the rest of my day, an analogy came to mind.

Special needs parenting is kind of like a snug pair of jeans.

We all have that pair of jeans (at least, all of us ladies… guys, just trust me on this if you can’t relate) that fits great after about an hour. Or maybe after one day of wearing them when we pull them on for the second day in a row. But when we first pull them on? The button is hard to close, the fabric squeezes too hard in all the wrong places, and it’s almost a workout just to get them on.

For me, that’s how it is with my special needs mama badge.

(As far as I know, there’s no actual badge for us. But if one existed, I’d rock that bad boy.)

We have three children with special needs: cerebral palsy, epilepsy, and HIV. For two of those children, we had the luxury of never knowing our child without a diagnosis because we adopted them after that pivotal moment. We never had to reconcile our dreams for our children with the surprise of their diagnoses. Zoe, in our history with her, has always had cerebral palsy. Our hopes for her have always involved the knowledge of the brain injury she already had before we knew her.

Those pairs of jeans are often easier to slip into.

For Robbie, though, I’ll never forget the moment when so much changed, the moment when I found him choking on his own vomit while seizing for more than 15 minutes until the paramedics drugged him to bring it to a stop. That was the night that separated before from after for us.

I fought hard to get into those jeans, and it took much longer for them to feel comfortable.

Some days, though, you’ll have to fight to put them on.

And that’s okay. There’s grace a’plenty for all those somedays.

To the friends, church leaders, teachers, family members, and others who want to love that mama well, I say this: just because we wear the jeans well doesn’t mean we didn’t fight to put them on. We wear them because they’re our jeans.

Some days, we make it look easy. Some days, it might be. Most days, it’s just what we do.

So Joshua did as Moses told him, and fought with Amalek, while Moses, Aaron, and Hur went up to the top of the hill. Whenever Moses held up his hand, Israel prevailed, and whenever he lowered his hand, Amalek prevailed. But Moses’ hands grew weary, so they took a stone and put it under him, and he sat on it, while Aaron and Hur held up his hands, one on one side, and the other on the other side. So his hands were steady until the going down of the sun. And Joshua overwhelmed Amalek and his people with the sword.
(Exodus 17:10-13)

Sometimes we think ministering to families affected by disability is about programs and volunteers and forms and logistics. Sometimes, it is.

Most of the time, though, it’s about coming alongside families as they fight to wear those jeans they never would have picked out for themselves, holding them up as they grow weary and steadying them as they run with perseverance the particular and peculiar race God has set before them.

I am so thankful for all the Aarons and Hurs who have held and steadied me as I don these jeans I never thought I’d wear.

So very thankful.

This post first appeared at The Works of God Displayed. 

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Shannon Dingle

A recovering perfectionist, Shannon Dingle now delights in the chaos of parenting six small children. She also leads Access Ministry at Providence Baptist Church in Raleigh with her husband Lee, a role which began when special needs were something that happened in other families but not theirs (yet). You can find more of her writing about their family and ministry at Dinglefest and The Works of God Displayed. Most days are less about writing, though, and more about diapers, carpool, and meal prep, amid the logistics that come along with diagnoses of cerebral palsy, HIV, epilepsy, childhood trauma, and FASD. Her parenting journey is nothing like what she thought it would be, but she's thankful God discarded her childhood dreams and blessed her with this perfectly imperfect life instead.

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