The story I must tell…

I’ve been friending up on Facebook lately. I was at a writer’s conference a few months ago where I learned that if you want to publish a book, and actually sell that book, you need a platform. And social media is where it’s at. Since I’m usually a bit of a social media hermit, I started adding folks like crazy. I mean, what good is launching a book if nobody knows about it? As the new friends come rolling in, I do my best to just focus on the smiling faces, both familiar and new, and not oogle too long at their personal details, especially when it comes to old high school acquaintances, where the temptation for comparison is especially strong.

That’s what Facebook was designed for, remember?  Comparison.

But research and personal experience both confirm for us that to do that is the kiss of death for our happiness, motivation, self-esteem. Case in point: most of the people I went to high school with have marriages, families, houses, mortgages, careers, businesses. I notice that they take vacations, some really great vacations. I feel a twinge of pain looking at these details. My stomach hurts and I feel a little small. I mean, I don’t have a house. I've lived in an apartment on rental assistance. I don’t take vacations. I haven’t had enough money for that.  For a long time,  I qualified for food stamps.

My life has not been “conventional” and so I have not landed in the same spot, in my mid-forties looking at the approach of an empty nest, as many of my peers. But in all honesty, I would not trade my current position for anything in the world. Not for a kick-ass house, a blazing hot beach in the Caribbean, or a pot of gold. You see, I put all of my eggs into one basket. All my focus, all my energy, all my resources have gone toward the accomplishment of a single goal. And now, what I have to show for all these years of living is a healthy, capable daughter.

“Um, so what?” you might think, those other folks have healthy kids too. Yes, but most of them started out that way. Mine did not. As a tiny baby, my daughter Haylie was brain injured. There were more than a few tense, terrible nights in a hospital where I kept constant vigil by her bedside praying that she live. And when she did, my prayers changed. Not only did I want her alive, I wanted her alive and well. Call me demanding, but that’s what I wanted.

So, the prognoses did not sit well with me: learning disabilities, seizures, developmental delays, cerebral palsy, motor problems, impaired vision, hearing, and speech. None of that was ok with me. Neither was the suggestion that I just take her home, raise her as a normal child, and see what happens. Really? Just sit and watch and wait while this ticking time bomb inside my child destroys any real hope that she will ever have a “normal” life? Watch and wait for it to explode?

It turns out that passivity is not my strong suit. So, during those early years that I did not know what to do I became a pretty high-strung, irritable, neurotic mess. As the days and months turned into years, I did my best to focus on her abilities, her preciousness, her gifts, but the glaring truth, staring me right in the face every time I looked into those adorable big green eyes, was that she had a problem. A big problem.

The seizures came more frequently. The doctors upped the meds or tried new ones. Her friends began to pick on her and leave her out as she became less and less capable of keeping up with them in every way. Finally, when I found myself in the hallway one morning, bent over her in a stressed out rage, shouting into her little face about god-knows-what (actually, I’m pretty sure it was about not changing clothes again for the third time before getting out the door for daycare so I could get to work on time just once this week in order to have a shred of hope I wouldn’t be written up again or, worse, fired) I just felt something click inside me. This can’t be it. This cannot be our life. 

No.

That was the morning my mom gave me the number to The Institutes for the Achievement of Human Potential.

“They can help,” she told me, “I’ve just spoken to a woman named Harriet and she says that they can help. Call them.”

I took the paper and huffed off, wishing my problems and my faults and the growing, steaming, stinking pile of shit that was my life and my parenting skills wasn’t so glaringly obvious. But call I did. And that was the moment my life began to change. That was the beginning of Haylie’s triumphant march down the long road toward wellness.

This is a bit of a spoiler alert, and I certainly hope it doesn’t affect my book sales, but I’m telling you now that she makes it. She makes it. She no longer takes seizure medications, and she no longer has crossed eyes, and she no longer has cerebral palsy, and she no longer has learning disabilities. She no longer has any of those labels in the long list slapped on her by the very well-intentioned mainstream medical community.

She made it.

She’s in the other room right now looking at classes she wants to take for her business degree with a double major in dietics and gerontology. Or maybe she’s in there planning another raffle to raise money for the maternal health care clinic that our friend started in the Ivory Coast. I don’t know. I don’t have to hover over her anymore, count her breathing, count her grams of protein to carbs to fat. I don’t have to remind her to do a respiratory treatment every four minutes or hop up on the brachiation ladder a hundred times a day. I don’t have to micromanage every minute to ensure that we can fit all of the components of the intense neurological treatment program into each and every single day, seven days a week, to make sure that her brain grows and functions as it should. I did that for years. All of my eggs, that basket.

And now, it’s in the past. Ahead, a bright new future.

So this is my “coming out.” My transition from that life as the struggling single mom of a brain-injured kid needing so much help (her needing so much help and me needing so much help) to this new life where I step into my power, share my story with the intention of helping others, and bask in the joy and relief and freedom of watching this capable young woman fly. I have the courage now, and the calling, to tell this story. To tell the truth. The whole truth. Won’t you join me?

still moist,
from cracked chrysalis
I emerge,
wings unfolding,
where to fly
from here?

Please feel free to leave a comment below.

And PLEASE like and share on social media.  The more people I reach with our story, the more children we can help.  And the more moms too.  Moms don’t feel well when their kids aren’t well.  That’s just a fact.  So, this is for the moms (and dads).
​
With so much love and gratitude,
~ Darci