Learning to Run: Learning to raise a child with a disability

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This is a personal post.

It’s available in distraction-free (- no ads) PDF for my patrons, linked here. It’s also at the end of this post for people who benefit from access to PDF’. If you want to hear me reading this, just click the link below.

I learned how to run last year.

I lined up with 30 or so other people and listened to experts talk about running (only since I am deaf, I really just 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. I was out of shape, overweight and I had smoked 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.

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 cry again, especially when the old lady at Safeway calls our little peach a mongoloid retard.

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 facepalm. shame. 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 well 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. The lady at the IEP meeting thinks my precious peach is stupid, rolls her eyes at me. 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 precious peach, for her to be judged, tested, assessed and held to some litmus of normalcy, right?

image of a woman with dark hair and her eyes looking downOh fuck that. Fuck you and this can be so fucking hard.

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.

Our breathing gets easier and easier and we find we can help others run too. We can encourage them. Love them. Tell them they are not alone. Remember that for them it’s hard and new and the words are still unfamiliar, the acronyms unknown and the raw feeling of being birthed into a community that was often not their choice, fresh.

Then the day comes when someone says we are a poster child for acceptance, and we laugh.

We laugh long and hard, so hard and so long the tears slip out the corners of our eyes in silent tribute to the hours spent in self-purgatory over every uncool, hurtful thing we have ever uttered, thought about, laughed over.

None of us – not one –  is a poster child for acceptance and yet we all are.

Because we are all trying.

We care.

We love.

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.

woman holding a child. her eyes are closed

Passing the Baton & Helping Parents:

Posts on the resources related to disability benefits and the system (- SSI, SSDI, ABLE, Medicare, Medicaid, PASS, Voc Rehab, IPE/IEP, etc). Click here if you’d like to receive these.

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  1. I LOVE reading your blog. I really do. I always feel like you’ve taken what I’ve felt or thought and actually put it out there when I wasn’t confident enough to. I do the “OMG, did I laugh at that/say that/post that?” a lot. I actually still feel like I committed a faux pas with the “hard of hearing” thing I said on FB. I just console myself with reminding myself that I’m still learning, and I AM learning. I want to. Whereas, sometimes I feel like so many people don’t WANT to learn. They don’t want to even listen. People like your old lady in the grocery, the therapist, even know-it-all Special Education administrators (I have one of those… blech!)

    So anyway, thanks!

  2. Bestpostever says:

    Best post ever and the new road to holland for parents one year after diagnosis for any disability. Sign up to follow this incredible powerhouse of comfort & honesty RIGHT NOW.

    If this post doesnt go viral I will eat my hat. You always ROCK, keep on keeping on my friend!

  3. I love that – “It’s not a race; it’s a relay.” That sums up the way I feel right now in so many ways. One day you are totally focused, sprinting toward your finish with confidence and power, the next you’ve passed the baton and now you are a little lost, wonder if you are doing the right thing. I guess the next time I’m in that place I’ll try to remember the baton will come back to me if I keep following the track.

  4. thank you for this amazing and inspiring post! i love reading your blog. my noah is just 5 months old and i’m still new. yep i’m still learning to run. thank you for writing and for passing the baton all the way to manila, philippines 😀 love and light to you and your family!

  5. LOVe this post! Wow! You say exactly what is on my mind. You put on paper (viral paper) so eloquently what I just can’t seem to do! Thank you!!

  6. Beautiful. I’m still a beginning runner, but I loved the “its not a race; its a relay”. 🙂

  7. Just found this one from reading your new book. It has really summarized how I have been feeling and since I have yet to really connect with another parent I felt alone. Thank you so much for just “getting it” and writing it down for the world to see.

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