“I could never do what you do!”

It’s supposed to be a compliment.  People say it to special needs parents all the time as a way of commending them for their hard work and perseverance.

“I could never do what you do!”

Yeah, well guess what?  Eleven years ago, I couldn’t have imagined doing what I do now.  I had no plans on doing what I do now.  It was never on my radar that I’d be still potty training my daughter this close to her 12th birthday.  It never occurred to me when I gave birth to her that she’d live with us forever.  I never pondered the thought of adopting a child with special needs.  I hadn’t really been around any people with disabilities at all.  I knew nothing about special education, had never seen a neurologist, had never needed more than the basic medical intervention for my older three children who rarely even got ear infections.  We could go the entire year before seeing our pediatrician, because my older three kids were the epitome of robust health and early milestones.  Heck, even during her first year of life, Maura fell into that “happy healthy normal baby” category.

We never saw it coming.  There was no time to prepare.  Just one day – BAM! – we went from normal parents to “we need to run tests”.

I didn’t know what I was doing.  I flailed fantastically for a bit.  But I had no time to ponder if I could do any of this because things had to be done. Blood had to be drawn.  Evaluations had to be done.  Appointments needed to be made.  And three other children had to be cared for in between it all.

If I had thought about it, I probably would have crashed sooner.  But I didn’t have time for pity parties, I had to make my toddler catch up developmentally. By the time we embraced the idea of her delays being more permanent, two years had flown by.  Even then, I had to fit my mental breakdown between soccer practices and speech therapy.

There were things to do, and I had to do them.  If I didn’t do them, no one else would.  Not doing was not an option.

When Maura was diagnosed with epilepsy, I sat in the doctor’s office as they explained medications, and seizures, and handed me a big book to read about childhood seizures.  My first thought was “I’m going to need a bigger purse.”  It wasn’t until they handed me a medication with the words “rectal gel” on it that I thought “Oh forget this.  I can’t do this.”

But I learned about it.  I was prepared to do it.  Because there was no other choice.  It had to be done, and I was the one to do it.

When the fit hit the shan at school with Maura, I spent hours going toe to toe with the special ed director.  Not because I wanted to – I have always been more comfortable in the “non-confrontational” role.  But it had to be done if I wanted to make sure Maura got what she needed.

Did I think, almost 12 years ago, that I’d be here, in this role, as both mother and caregiver to a special needs child?  That I’d become a voice for her and families like us?  That I’d get giddy at the thought of new medical research?  That I’d be mentally designing a house with little features to help make life with a disabled child easier?  Could I have seen myself kneeling on the floor of a fabric store with my hysterical tween helping her calm down?  Could I have imagined any of this?

The honest answer is – “Hell no.”

It was never on my radar.  It was never part of my life plan.  It was never even a thought in my brain.  I wasn’t prepared for any of this.  I couldn’t have done what I do now.

But I learned, and I do it.  I do it because not doing it is not a choice.

I’m not a hero.  I’m not special.  I’m just doing what any mom who loves her child would do – learn and adapt and carry on.

Because not doing it is not an option.




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