Tag Archives: special needs parents

So I run

5 Aug

It’s been 6 months since I’ve written.

Probably even longer since I’ve written anything with 100% honesty in my heart and left it all out here on the page.

It’s been 8 months since I got divorced.

It’s been 1 hour since I decided to not let the fear of who might read what I’ve written stop me from being true to myself and writing what I need to, to cleanse my soul.

Running and writing do that for me.

I get a lot of flack from people for running and working out as much as I do. I run almost every day. Lift a couple of times a week and compete in triathlons.

“Why do you run? Why would you do triathlons? That’s so much work! You must like pain and suffering.”

Maybe I do.

I swim until the muscles in my shoulders and back ache. I ride my bike until my legs and butt burn so bad that I can’t crank the pedals one more turn. I run until the sweat drips from every inch of my skin.  I run until the pain in my heart becomes as numb as my legs.

I run because I don’t know what else to do with my feelings.

I run so that I can drown those feelings with sweat and let the unspoken words loop endlessly around in my brain until I’m too exhausted to speak them.

There are days when I feel like I’ve come so far in the past 8 years since Oli was born. I’ve come miles and miles from where I was 3 years ago.

But sometimes I just have a moment.

Or a day.

Or a week.

Or a month.

Sometimes it feels just like yesterday when I looked at the tiny baby sleeping in the cradle beside me and wondered if I could ever love her enough. If I would ever be enough for her.

I don’t have a problem looking at her now.

I don’t have an issue feeling for her. For accepting her and pushing her and dreaming for her and advocating for her and being her legs and her eyes and her voice and the interpreter between her and the rest of the world. I don’t mind teaching people about her and answering questions and embracing the differences and cherishing the moments.

I run into to trouble when I try to do all of these things while looking at me.

I run into to trouble when my mind merges with my heart and I’m left feeling less than and inadequately equipped to deal with all that comes with being a special needs mother.

So I run.

I run for her, with her, towards her.

And sometimes I run away from her.

I run away from the pain.

I run away from the fear of the future and the unknown.

I run away from the therapists and the doctors and the never-ending appointments.

I run away from the ARD meetings and IEP’s, missed goals, reports of plateaued progress, regression and missed milestones.

I run away from myself.

When I talk about her, when I talk about us, I still feel the need to justify everything. To throw my FINE’s at the world and scream from the top of my lungs WE ARE FINE! DON’T YOU KNOW HOW FINE WE ARE! NO! THOSE ARE NOT TEARS! I HAVE SOMETHING IN MY EYE!

Why do I do that?

What’s so wrong with being not fine?

I still haven’t figured that part out yet. I don’t know what’s wrong with talking about how I feel.

I still haven’t really figured out how to feel how I feel. If that makes any sense at all.

When Oli was born and the pain and despair simply became too much for me to bare, I turned all of my feelings off. It was so much easier to be numb than it was to face another day literally drowning in my fear.

Now 8 years later I’m trying to turn them back on.

It’s harder than you’d think.

So I run.

I run and I run and I run.

The tears melt into sweat and neither can be distinguished once they drip from my nose.

I’ve pounded miles and miles of trail with my little wet feelings littered behind me.

One day, I hope to be able to talk as much as I run.

Until that day…

I’ll run.

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Special needs parenting or nauseating roller coaster ride?

11 Oct

I wanted to write something for the people who may have babies and are just beginning to fall, head first, into this world of special needs parenting.

If you are like me, you are most definitely feeling the bounds of gravity as you plunge down screaming towards an end, a ground that seems impossibly far away. You’re racing towards a bottom that you cannot see, you cannot feel, and you believe you may never reach the end.

Let me assure you that you will.

Oh yes.

That end, that bottom, that ground is there.

BAM!! CRASH!! BANG!!

stock-vector-bang-crash-54901102

Or maybe you’ll land a bit more softly.

Soft_Landing_by_Domo__Kun

Or maybe you’ll even receive a warning prior to landing.

SoftLanding-300x203
(Where was this sign when I was approaching?)

There will be a moment, a second, an hour, a day, a week, a month… I cannot say how it will happen for you…where everything will begin to smooth out. It will begin to even out. You will start to once again feel comfortable in your own skin again.

Or you will smack your face on a rock buried in the mud at the bottom.

This was me.

For me it happened in an instant.

A head jarring, face slamming, body crunching SMACK onto the bottom.

I cruised along downward in misery, in self-pity, in blame, regret, remorse, grief, sorrow…for years before a light bulb went off in my head like a giant flashing beacon begging me to notice it. It had been there all along. Drawing me down. Steadily building momentum and pummeling towards the forefront of my brain waiting for the right moment to come out and slam me into that pit.

Hello?!! Here is your awakening! Here is the answer that you’ve been waiting for!

THIS, MY FRIEND, IS THE END.

STOP FEELING SORRY FOR YOURSELF! STOP FEELING SORRY FOR HER!
SHE IS WHO SHE IS.
NO MORE.
NO LESS.
JUST BELIEVE IN HER.

And that was it. That was all I needed to “get over” the sadness. I was able to move on at that point.

All of the self hatred, self pity, sadness…it all just went away.

It seems pretty simple.

Looking back at it, it seems like someone along the way should have just told me that. They should have been able to say “just get over it”. “Just accept her.”

In truth… they did.
Lots of people did.

But hearing the words with my ears and believing them in my heart are two totally different concepts. I heard lots of people telling me how to go about moving on from this thing that had happened to me.

I heard lots of people tell me how they had dealt with something similar. How they had moved on from it.
I listened and listened. I prayed. I pleaded. I just did not feel it.

Until I did.

Until I understood with all of my heart that this was really not something that had happened to ME.
Until I threw away all of my expectations and just expected her to be the very best that she could be.

Which may not make sense to you at all, but it makes perfect sense to me.

How can I not have expectations for my child?

This is how.

I expect nothing at all of her and I also expect everything.
I expect that she will do everything, nothing at all like anybody else in the world.
I expect that she will do nothing but everything that she can do.
I expect that she will do and be who she is and I love her for that.

It’s just a different perspective. A different way of viewing life and the world in general.

Before she was born I had all of these dreams, all of these visions, of how we would be, how we would exist in the world as mother and daughter.

After she was born I mourned the loss of THOSE dreams.

I didn’t realize that I could come up with NEW dreams.

I didn’t know that I was able to re-create this new life however I wanted to.

I didn’t know what a blessing and a gift Oli truly was to me.

Once I began to realize all of these things my whole life began to change.

I wouldn’t want it any other way now.

So.

If you’re just beginning this terribly bumpy, painful, twisting, and nauseating roller coaster ride of special needs parenting I want you to know, it gets better.

I promise you. It gets better.

You may have to be patient. You may have to hang on, white knuckling your life for a little while before it does. But it gets easier.

People used to tell me “time heals all” and I thought they were full of B.S.
I never thought that it would get easier for me.

You know what?

I was wrong.

It did get better and it continues to get better all the time.

I just have to leave those expectations and pre-conceived notions of how I THINK it should be, at the door.
I just have to live my life loving my Oli however she is.

Or…

Maybe it will be totally and completely different for you.
Maybe you’ll be given a diagnosis and be fine with it from the start.
I’m not trying to speak for the whole world here. I’m just trying to give someone else hope that if they’re feeling like I felt in the beginning, it will get better.
Besides…what do I know?
Some days I’m still trying to figure this whole thing out.

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