Learning to run the relay that is special needs parenting

Guest post by Meriah Nichols
Photo by Meriah Nichols.
Photo by Meriah Nichols.

I learned how to run last year.

I lined up with 30 or so other people and listened to experts talk about running (only I couldn’t hear them for the most part so I zonked out and looked at shoes). Then I practiced. I ran around the track. I ran down paths. I ran down sidewalks, walkways, the beach — and I kept on running.

It was painful excruciating in the beginning. Besides being in the first trimester of pregnancy, I was out of shape, overweight and my lungs had the full pleasure of having known at least a pack of cigarettes every day for twenty years!

It was really frickin’ hard and I’m not going to pretend it wasn’t.

The thing that held me together and kept me chugging along was the love I have for our kids with Down syndrome — wait, forget Down syndrome: Simply the love I have for all of the kids I know.

I think having a child with a disability is similar to learning how to run.

We line up and listen to a whole lot of people tell us what we should do. Sometimes we hear them. Often we don’t. They are usually talking from their own experience anyway and only slivers of what they say will have real applicable value to ourselves.

Then we run: we try and try and try and try.

We advocate for our kid, we learn all this new disability language, we talk, blog, preach, bitch, cry and yell.

We poke around in our own heads, every uncool, non-PC thing we ever did comes back to haunt us (Did I really say I’m having a “special” day…? Did I laugh at the “retard” jokes on South Park? Did I think it hilarious when someone asked if Downieville California was the Down syndrome capital of the US? Sigh.). We just want to cry and stop because this is NO FUN, dammit, and we don’t want to be the PC police and we don’t want to feel like bitch-slapping the audiologist because she was calling our precious peach “a Down’s kid” in an unflattering tone.

But no. We keep on at it, keep trying and trying and trying and we do it only because we love our kid, love all of our kids and if we don’t do this, who the hell is going to?

Then it gets easier.

We are stronger. We understand more. We have mastered the acronyms and have our friends in the field. We are not alone and we know it.

We can breathe while we race. We can pace ourselves.

We go to meetings and see new parents, new runners and we are overcome with feelings of gratitude that we are not there anymore, we know how to run now! But waves of memory may very wash over us, just remembering how it felt to feel the burn in our lungs while we struggled to pump our legs forward just one more freaking block.

The memory turns into reality as we come up against something new, untried, and we fall splat! on our face in a cesspool of prejudice and discrimination. I get to hear one more therapist tell me my kid is “Doing great; Down’s kids are always delayed so don’t worry” because that’s what I want for my daughter, for her to be judged, tested, assessed and held to some litmus of normalcy, right?

We hit the “brick wall” of running, want to come to a dead stop. We can’t go any more. It’s too much. We’re sick of this shit.

But then, well, a deep breath comes up from within us. We get some sleep, wake up and take a swig of our coffee, wipe our mouth with the back of our hand, narrow our eyes, move forward and somehow just by doing that, it gets easier again.

It really does.

It’s not a race; it’s a relay. Of one generation of parents to the next. We are in this together, learning as we go, because we love our kids.

Comments on Learning to run the relay that is special needs parenting

  1. This is beautiful. I’m sitting here crying, it perfectly describes what we have/are/will going through. I often forget how far we have come. Awwwhhhhh this is amazing.

  2. thank you for writing this! and thanks Offbeat Families for sharing it. it is a perfect reflection of my own experience with my 10 year old who has dyspraxia. and having recently hit a new wall it’s very reassuring to remember the cycle. i’ll be running again soon 🙂 it’s not a race, it’s a relay. i’m thankful we’re in this together.

  3. What a beautiful and honest post. Thank you for sharing. As a clinical social worker, it is really eye opening to read such a raw sharing from the other side of the fence. And I totally cringe that anyone would refer to your child in such offensive and callous ways. Keep chugging mama! You are amazing! Big love.

  4. I’m sitting here crying. My precious baby girl has been sick since she was 3 months old. She is now 27 months old and the doctors still have no idea what’s wrong. We have taken her to over a dozen specialists here in Kansas City and have driven 3 states away to the Mayo Clinic in MN with her to see another dozen specialists multiple times. And here I sit after just getting home from MN again and we still have no answers. Just more medicines to add to the list and routine. They tell me that their goal is to “keep her comfortable” as if she were 90 and at the end of life instead of 2 and at the beginning. They talk to me in such cool, calm, tones about things like “quality of life” and “life expectancy” as if they were discussing the new dish at the local restaurant on the plaza. After 2 years I keep waiting for it to get easier and some days it is. I was sitting in the doctors office discussing spinal surgery and it felt “normal” and that in and of itself made me feel abnormal the more I thought back on it later. For me the relay is daily. Some days my lungs burn and some days I feel like the warrior my daughter deserves. I wish I could say that the warrior days out number the burning lungs days. I keep hearing it gets easier and to find a support group but they really don’t have support groups for mystery illness babies. So I’m stuck feeling alone with my burning lungs. I guess it some ways it helps to know that there are other special needs mamas who “get it” even if their special need is different than ours. That probably totally sounds like a selfish asshole thing to say but it really does feel good to know there are others out there who wanna scream THIS SUCKS no matter how non-PC it is to do so.

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