the moment we realized just how “normal” our daughter’s disability has become to us

Today I took Etta to get her second filling in 5 short years of life. This is hard for me, because I didn’t get my first cavity until I was like 28. (I’m blaming pregnancy for ruining my perfect record. It’s a thing.) Anyway, we’re pretty into good oral health and hygiene, and with her first filling, I felt like a failure for letting it happen.

FullSizeRender 24

Our new dentist here in Denver is awesome, and she said it looks like Etta just doesn’t have good enamel (something about her teeth being hypoplastic?), that it didn’t form right on her baby teeth, and leads to grooves and weaknesses where cavities can form, despite our good oral hygiene. The good news is, on X-rays, her permanent teeth look better, but we may be spending a lot of time at the dentist for these baby teeth.

After we left the dentist, my husband said to me, “Man, Etta sure got the short end of the genetic stick.”

It was only a beat later that I realized how absurd that comment sounds. I mean, we have one kid with spina bifida, but here we are agreeing that it’s actually the “healthy” twin who lost the genetic lottery. And it’s actually kind of true! Etta’s the short, tiny one (finding school uniforms to fit a 3-year-old-sized Kindergartener was a struggle). Etta inherited my cardiac mutation. And now it turns out that she got crappy teeth?

Meanwhile Claire’s differences have just become normal to us, and normal to her as well. Strapping on AFOs, using catheters, scheduling doctor’s appointments and therapies, monitoring for signs of shunt malfunction, wondering if she’s getting a cold or a UTI, they’re just part of our life.

IMG_4590 2

And remembering how we felt on diagnosis day, or when we came home from the hospital, I realize how huge this mundane life actually is. What at first seemed insurmountable and life-shattering, turns out to just be another way of being a person in the world. Aren’t we all just adapting and trying to use the bodies we were given to the best of our capabilities? Don’t we all sometimes need extra help in certain areas?

So, in case you’re a parent or person who just got a big scary diagnosis, I hope you can read this and take a little comfort in knowing that one day, it may very well all seem very very normal. Just part of life. Not a tragedy at all.

Here we are today, thinking just maybe it’s our able-bodied daughter who got the bum end of the twin genetics dice roll. What an amazing thing.

3 Replies to “the moment we realized just how “normal” our daughter’s disability has become to us”

  1. It is so true. I sometimes forget about my son’s Autism until I see him in a setting with “normal” children then I think – oh wait.


  2. This August 16th was our 5 year anniversary of our daughter’s diagnosis day (Spina Bifida). Usually, we try to set aside a little time to celebrate our family & remember how far we have come. (Sometimes bringing with it feelings of the sadness we felt on that day). Well, this year it fell on the first day of 1st Grade for my son & my husband (teacher) first day with students. On Friday it dawned upon me that we totally missed it. I kept thinking school starts on Wednesday and didn’t even look at the calendar nor the date. It turned out that August 16, 2017 was a good day for all of us. I was so excited to send the boys back to school, my son was super excited to be back in class and us girls had a good day shopping :) Five years ago I thought August 16th would be the forever etched in sadness. Time does heal some pain. I have days but you are right….it becomes your new normal and forget how life “is suppose” to be.

    Liked by 1 person

  3. Sotrue this post was exactly what I needed. I have heart disease and have had it since birth. I got the news that I can’t eat refined sugars anymore and this is a adjustment. But I can do it with God’s help. I still can eat fruit. So this is good! Thanks for being a great example to me! Your daughters are beautiful and sweet!! Have a wonderful day!


Comments are closed.

%d bloggers like this: