I would give my last breath to make her perfect.
That confidence I wanted growing up…she has it.
The pure, raw talent that makes everyone take notice…she has it.
The wit, the charm, the sense of humour that I wished I had at 9…she has it.
I have it now at age 36…clearly.
My water broke at 32 weeks, and I went to the nearest hospital, only to be rushed to a different one better equipped to treat a preemie, and I saw my dad come out of the bathroom in tears. I thought, no…she’ll be fine. She’ll be perfect. I was 26 years old. Naive. We look back now and talk about how that should’ve been a lot scarier than it was for us. But she was our first. It was our normal to drive home from the hospital without our baby every day.
But she was perfect. Ten EXTREMELY tiny toes, ten itty bitty fingers. We fed her through a tube in her nose for the first few days (or weeks?), and then we had to teach her how to suck, swallow and breathe while she was nursing or taking a bottle, without her oxygen levels dropping. After a month, we went home.
She came when she wanted to. Blazed her own trail. No one was telling her what to do. There’s been nothing she couldn’t do. She swims like a fish, and was in a pre-competitive swimming group when she was 4. She could do perfect cartwheels, and swing across the monkey bars at the park like nobody’s business when she was 3. We’ve always said that everything she touches turns to gold. She’s a natural at everything. Well, everything except ballet…eek.
We fight. Oh man, we fight. I yell, she yells. We yell at ourselves. I yell at a nine year old me. She’s so like me it’s scary. Except all that natural ability stuff. She pretty much got all the sassy, cocky, sarcastic, bitchy, grumpy crap from me. That’s the me I yell at. A lot.
But now she’s sick. Still ‘perfect’ in our eyes, but with a bit of uniqueness all her own. She has an auto-immune disease that affects her skin called Morphea. It’s being treated with Methotrexate pills (the chemo drug) and high dosage Steroids, given through an IV. We visit the Children’s Hospital 3 days a month. The beautiful building on top of the hill that I used to tell my kids they NEVER wanted to go to. We go now.
But she’s also an amazing gymnast. I hate saying she’s ‘sick’. It’s just a skin disease, and mostly a cosmetic issue right now. In the grand scheme of things, if someone pointed a gun to my head and made me choose a disease for my kid to have…I guess I’d choose this.
Or Gingivitis. Okay…ya, that.
She shows off. I tell her to show off. I want to show her off. She’s a better version of me. I go along for the ride with every back flip and handspring. I hold her on my lap for every needle poke and she squeezes my fingers. She shows weakness, I soothe her. I get mad. She’s not weak. She’s my fighter. I stroke her hair and give her kisses when it hurts. I tell her she’ll be okay. Because she has to be.
She cries and says she doesn’t want to do this anymore. I talk to her about perspective, and we talk about how fortunate she is. We pass kids in the hospital halls who could live there. We see kids with shaved heads and wires and tubes and the beep, beep, beeping machines. And then I cry with her, and talk about how much it sucks, because however ‘fortunate’ we may be…its happening to her. And it does suck. And sometimes we need to wallow in our own pity for awhile. But then we quickly remind ourselves that it’s just a few pills, and a few needles, and a few hours of feeling really crappy afterwards, and it’s just for three days a month. And then we wallow again.
And then we tell Charlie to stop rolling around on the dirty hospital floors.
On her first visit, she made a button to wear that says, “I am Strong”. She wears it every time. I bought her a ‘Healing Angel’ in the hospital gift shop that she keeps in her pocket. I talk to her about positive thinking, visualization, and how ‘Thoughts Become Things”. On the nights of her treatments, I lay beside her & hold her while she sleeps, giving her every ounce of healing energy I have. All that, plus the nasty drugs, will fix her.
And then watch out. Because I have a feeling we ain’t seen nothing yet.