Musings on Modern Healthcare, My Mental Health and Footwear

For anyone who's not aware, our daughter Harper was born with spina bifida, a birth defect that causes lower limb paralysis, hydrocephalus, incontinence and a bunch of other fun medical issues. So getting her care transferred from Tennessee to Kansas has been something of a challenge.

Even though she doesn't see as many specialists and therapists as she did when she was younger, the process of finding doctors, explaining her situation, convincing them I know what I'm talking about and getting the records transferred has been monumentally frustrating. Add in Ellie's severe speech delay and those related therapies, and you've got the makings for one crazy momma.

This picture really has no relevance to the post, but some folks have asked
why we have green and purple pumpkins on the front porch.

Managing the kids' myriad healthcare needs has made me much more of a nutjob than usual - embarrassingly so actually. I've broken down crying in the middle of the YMCA while trying to get Harper's urology records transferred - a process I wrongly assumed would be relatively easy - and had conversations like this one, which occurred on Nov. 11:

Caller: "Hi, Harper's new braces are in. Can we schedule an appointment for the first week of December? Our technicians are taking vacation during the week of Thanksgiving and that's the soonest we can get her in."

Me: "No, that's really too long to wait. Harper desperately needs these new braces, and your staff's vacation schedules should not preclude her ability to walk. You have other locations in town. Could a technician at another office see her sooner?"

Caller: "I'm sorry, I don't have access to their schedules."

Me, using an ever increasing East Tennessee redneck accent: "Then I suggest you get on the phone and FIND SOMEONE WHO CAN SEE HER NEXT WEEK!"

Not my shining moment by far. But I've discovered when dealing with some - certainly not all - members of the medical community, the only way you can make yourself heard is by being loud and aggressive. It's not that these folks are mean; they're just apathetic. They deal with dozens of moms and dads just like me every day, and my kid is no more important to them than the next one. I'm just one more crazy mom for them to manage.

A little bit of empathy, a smidge of critical thinking and maybe a tad of flexibility. That's all I ask of the gatekeepers who allow us access to the girls' doctors and specialists. But after living in two states, I don't hold out much hope of ever experiencing that across the board.

However, my tirade with the orthotics office did get Harper her new braces yesterday. So after getting fitted, we headed out for our customary "new braces = everyone gets new shoes" shopping trip. We found a pair of Sketchers that fit. They're pink. She's thrilled. Ellie got light-up Disney princess shoes. She showed them off to everyone we passed in the store and flat-out refused to let the clerk remove the security tag. It was something of a scene, but then it always is with Ellie.

Before we left the store, kind of on a whim, I helped Harper try on a pair of knee-high, fur-lined gray boots. From previous experience, I had no hope that they would actually fit. But THEY DID! And she could actually WALK IN THEM!

Now I know most mothers don't cry like hormone-crazed lunatics when they find a pair of boots that fit their 5-year-old. But I sure did. Right there in the middle of Gordman's Department Store.

You see, for five years, Harper has only worn shoes specially designed to fit over orthotics, occasionally a pair of Crocs or the few styles of sneakers that I can cram her braces into. When I see the other little girls walking into school wearing their cute little boots and sandals, I worry that Harper longs to wear them, too. (She's never said anything along those lines, so I'm sure it's merely projection on my part.)

Even so, I'm thrilled that we found boots she can wear. Harper is no where near as happy as me. In fact, she's upset that they're not pink. (I've promised to attach a pink ribbon.) But one day, she'll understand the importance of shoes in a woman's life, and I'll look back on this day and smile.