You can’t make this stuff up

Posted by Karen - February 2nd, 2014

Posted by KarenParents of children with rare diseases find themselves doing and thinking things which are seriously out of the ordinary. Honestly, some of it is just so weird. And we recognize that it’s weird, and sometimes we feel like the only people who really GET this are other rare disease parents.

I saw this phenomenon in operation when, a few months ago, the Rare Disease Foundation (a local charity based in Vancouver) ran a “You know you’re the parent of a child with a rare disease when…” exercise in a listserv. The number of postings in reply was astonishing, and new responses continued to appear for several weeks. Postings were funny, sad and poignant. I thought to myself, it would be interesting to focus this a bit more and do it in the Fibrodysplasia Ossificans Progressiva community.

So without further ado, here is a randomly ordered list of things under the heading of, “You know you’re the parent of a child with FOP when…”

– Every time you meet someone’s newborn, one of your first thoughts after, “Gee, what a lovely baby,” is “How can I sneak a look at the wee one’s toes?  I wonder what the toes look like.”

Our physiotherapist was convinced that splints on Miranda's toes would eventually pull them outward to a more normal appearance.  Therefore, we had these little neoprene and plastic numbers on her feet for several months.  They did nothing.

Miranda well before her diagnosis, when an OT thought she could “fix” Miranda’s strange toes by having her wear toe splints (sigh).

– You scan the International FOP Association’s monthly birthday greetings e-mail to look for people over age 50 in hopes this means that the average lifespan of people with FOP is increasing.

– You get used to (very used to) knowing way, way more about FOP than almost any medical person your child encounters.

– When your daughter is finally assessed for the first time by one of the few physicians in the world who know more about FOP than you do, you stare at this doctor as though you were seeing a unicorn, or the Loch Ness monster.

Dr. Grunwalld, me, Miranda, Dr. Pignolo and Dr. Kaplan (getting a scalp massage from Miranda, LOL).

Me and Miranda posing with some of these mythical beings…

– Especially if your son is young at the age of FOP diagnosis, you automatically look for tripping hazards in each room he is about to enter.

– Though you know your daughter is in very good hands at school, and that they’ve taken every necessary precaution in phys ed class, the idea of actually watching your kid in gym causes you to shudder in horror, and you know you should probably NEVER do it if you want to sleep again.

– You meet another family with a child who has FOP, and even though the only thing your two families have in common is the disorder itself, you feel like you can’t get enough of each other.

– If your son loses arm and trunk mobility at an early age, and needs your daily help with clothes, you forget flexible other little kids are (even if you have other non-FOP children yourself). When an occasion happens that you come in close contact with a non-FOP child, you find yourself amazed at her jelly-like wiggliness.

– You find yourself daily thanking science and/or the deity of your choice for the existence of the internet.

– You hear about a child with a lump which is suspicious for cancer, and even though it probably IS cancer, you wonder if any of the child’s doctors have given a thought to FOP.

– You look at a bump on your daughter’s body, and go back and forth for several days debating with yourself as to whether this is just the same bony bump she’s had for years, or whether it looks maybe a little bigger and is the beginning of a new flare-up on top of old FOP bone. More than half the time it turns out to be just the old bone which you somehow didn’t notice so much before.

– You are well familiar with medical terms like “bone morphogenetic protein”.

– You get used to receiving startled looks when your young son goes to buy something in the store, the clerk goes to hand him his change, and you have to tell the clerk to reach further because your son can’t stretch his arms to where the clerk is holding the money.

– You are always interested in another FOP family’s “how my child got diagnosed” story.

– You meet a family with a child who has some other form of special need, and inside the privacy of your own head, you find yourself mulling over the ways in which FOP is not as difficult to handle as whatever that kid’s problem is. You are also pretty sure, from the look on the other parent’s face, that that parent is doing the same thing that you are, in reverse.

Event T Karen 28-07-2013 10-51-33 AM

An FOP parent (me).

I bet there are a lot more things I haven’t thought of.  If you are an FOP parent or person with FOP and have a thought about this, please leave a message in the comments section.  It would be interesting to see this list grow…





2 Responses to “You can’t make this stuff up”

  1. rory otto says:

    Yes to all of the above!!! I’m glad I’m not the only one.
    I’d add that I can no longer look at any floor the same way because all I see is Sienna’s head bonking it. Marble floors send chills up my spine. Wood floors give me nightmares. Carpet is the new gold standard. :)

  2. Lara says:

    Excellent list! And like Rory, I will never look at flooring the same way again! The concrete floors at Costco are distressing. I would also add in addition to scanning for tripping hazards for little ones, I also scan all playmates at Playgroup, school, outings etc. looking for the impulsive types to give more space too and watch for children who may bump into him!

    Also every little bump leads to a triage discussion in your head ;)

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