It Could Be Worse
No one says parenting is going to be easy. You know going into it that there will be many sleepless nights. Kids cry. They throw tantrums. They’re expensive. They can be annoying. Your life will never be the same EVER again.
Fine. I get that.
But nowhere in the “to procreate or not to procreate” literature did anything prepare me for the ups and downs of raising kids with complicated and interesting health issues.
My pregnancies were fairly easy. I worried and obsessed with each pregnancy (the way that new moms do) that something was wrong with my developing fetus but after the 1st trimester I figured we were pretty much home free. My first child was huge (10 + lbs.) and there were obvious complications getting him out, but other than that everything was ok. He was a beautiful, happy, amazing little boy who hit all of his milestones without any problems. (Well, ok, there was the speech issue, but that wasn’t that big of a deal.)
My daughters’ births were completely uncomplicated.
For 6 years (with the exception of a hospitalization that resulted from an accident) we bounced along through the adventures of parenting. Then, in September of 2008, my son’s hair fell out. I don’t mean that some of it fell out. It ALL fell out. His eyebrows? Gone. His body hair? Eradicated. His eyelashes? Completely absent. In 3 months every single strand of hair fell off of my son.
The diagnosis? Alopecia Universalis – an autoimmune disease that causes the body to attack it’s own hair follicles.
In the grand scheme of things, not a huge deal. He’s bald and will probably always be bald but he’s otherwise healthy. People usually think he has cancer but he doesn’t. He just doesn’t have hair.
We cried. We threw things. We took a deep breath and we moved on. After all, It could be much much worse.
Life returned to normal and everyone seemed to thrive. My son excelled in his school work and became a force to be reckoned with on the soccer field. (Let me tell you – even without skills – a tall, bald 9 year old with sunglasses and a black skull cap looks menacing. Add to that the ability to stop you in your tracks and steal the ball and you have yourself a weapon on the field.) No one, as we originally feared, treated him differently or made fun of him. Really, the alopecia became a non-issue.
In March, I scheduled well checks for my son and 1st daughter. Ian checked out just fine. Josie seemed perfect. I was congratulated on raising “wonderful, healthy, well adjusted kids.” Then the doctor let a little worry creep in. ”I know that Josie is still growing at her usual constant rate, but something just doesn’t seem right to me. I’d like for you to have her seen by an endocrinologist.”
“But she’s always been little! Ever since she was 1. You said that as long as she stayed on her curve…” Sigh.
So, in May we visited an endocrinologist. Blood tests were ordered, bone age scans were run, and 2 weeks later we got a phone call.
“Hello. Well, I’ve got all of Josie’s test results back and it all looks good. Her bone age is normal, her CBC is normal, her growth hormone levels are good, but the test for Celiac came back positive. I’d like you to schedule an appointment with a pediatric GI specialist.”
“What? But she can’t have Celiac! She doesn’t have any GI symptoms. Don’t those kids have stomach aches and diarrhea all the time? She doesn’t have any of that.”
Apparently that doesn’t matter. Her serum screening test came back positive and the number was high enough that there really wasn’t any chance at all that it was wrong. A month later we met with a GI specialist who confirmed the diagnosis. My daughter has Celiac disease – an autoimmune disease that causes her body to attack her small intestine when she’s exposed to the prolamins (generally called gluten) found in wheat, barley, and rye. The treatment? She can never again eat anything that contains gluten.
We’ve tested the other two kids and they’re both negative but we’ve decided to all go gluten free anyway. Really, it’s not that big of a deal. There are tons more things that she can eat then she can’t. It’s completely treatable and reversible with a gluten free diet. Other than that, she’s completely healthy.
Sigh.
We cried. We threw things. We took a deep breath and we moved on. After all, it could be much much worse.
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