I’d Choose Gingivitis

Posted on Sep 9, 2013


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.

20130909-214621.jpg

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.

IMG_2182IMG_2231


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.

photo (5)

 

 

5 Comments

  1. I have the same angel for Dilly.
    Big crushing hugs to you gals, hospital life ain’t all it’s cracked up to be… oh wait, yeah… *shrug*
    ~~~Just keep swimming~~~ you’re stronger than you think you are. Xxx

    Post a Reply
  2. Hi there,
    I found your blog after I found your Instagram photo tagged morphea.

    Thank you so much for sharing your story. You are both so strong and inspiring.

    My 4 year old daughter was diagnosed with linear morphea on the left side of her face January this year. What you wrote, is exactly how I feel… I don’t think I could have put it better.

    May I ask how long your precious girl has been on methotrexate and steroids for and if you think it has helped?

    Best wishes
    Christine

    Post a Reply
    • Hi Christine,
      She did the IV Steroids 3 times (3 days a month for 3 months), and is still on Methotrexate (been about 4 months).
      We have seen improvement. The spots seem to be inactive now (the purple rings have turned more brown. We were told that pink/purple means active). We have a follow-up appt at the end of November, so I’ll know more then. Our fingers are crossed!
      All the best to you and your daughter.

      Post a Reply
  3. Hi there! Yours is one of the only blogs I have ever found where someone discusses linear morphea and the GAPS diet, which is how I found you!
    I’m an adult and have had linear morphea since I was 22 (8 years now). I’ve never had a doctor recommend the treatment your daughter is on, but tons of other topical and oral medications. I’ve been strongly considering the GAPS diet but as I read your experience, now I’m not sure. Since I’m older than your daughter though, I feel it could still help a number of other things in my body as I’m sure taking antibiotics as a teenager for acne did not help things (and probably contributed to my developing linear morphea). So would you not suggest the GAPS diet? Also, how did you find this doctor? I think I may live quite a bit south of you 🙂 so I cannot travel to Alberta, but I’m really interested in finding a doctor who actually knows what they are talking about, like you mentioned in your other post, when you decided it was time to start the low-dose chemo, etc.
    Wishing you and your daughter all the best…she’s beautiful and reminds me of my own whippersnapper who developed a similar personality as her mama! 😀

    Post a Reply
    • Hi Megan,
      We are very fortunate to live in a city with a Children’s Hospital. Tons of patients with Morphea get filtered through there, and they assured me they see it work – which made me feel very positive about the whole thing. It wasn’t even a question of what we would do – the Steroid trmt and methotrexate is just what they do when it’s as advanced and spreading as rapidly as Abby’s.
      That is the reason we didn’t continue with Gaps too. It was spreading too quickly and we needed to be more aggressive.
      I am still a believer in Gaps – I’ve seen it work wonders for a child with juvenile arthritis. But again, we needed to be more aggressive. And she didn’t have the energy she needed while on it to keep up with her gymnastics training.
      Hope that helps.

      Post a Reply

Trackbacks/Pingbacks

  1. 10 | Shannon Hilton {Blog} - […] to what she is now in 2014…I’m in awe. 2013 was rough – you can read about it here,…

Submit a Comment

Your email address will not be published. Required fields are marked *