I'm at that weird age where I really shouldn't be going to a Children's Hospital anymore, but since I've been there since birth -- and know pretty much everyone, even the Big Apple Circus Clowns (on a first name basis..) I still go. They know me and I know them. This isn't just a matter of comfort and familiarity, it's a matter of logistical ease. As I'm sure many of you know, explaining what O.I. is and knowing precisely "this is what has worked for me in the past.." and "this is what has not worked for me in the past..." matters a lot! 

It matters not only in the sense of saving time on those hour long healthcare visits, but it also matters in the sense of how much pain will I be in, or how high will my blood pressure be after I finish giving Dr. So-and-So a piece of my mind.
When I was little I remember my parents having to go to a specialist for nearly every part of my body. While my brothers could just receive a clean bill of health from their pediatrician for the start of the school year, I would have to make the rounds to each floor of the hospital. At the ages of five and six I thought it was fun to pronounce words like: "audiology" "ophthalmology" and "radiology" -- they were like Dr. Seuss rhymes to me. (More evidence that I am a very deranged person perhaps..) My mom would somehow finagle my appointments so that they would all fit into one day, a cooler would be packed with snacks and sandwiches, my backpack would be stuffed with summer reading books, I usually brought along my favorite toy (the etch-a-sketch) - and it would be a picnic at the hospital.
Maybe it is because I am slightly weird but I really did enjoy hanging out at Boston Children's Hospital. Every possible surface is covered in a swath of bright child-friendly colors; the patient entertainment center has arcade games to play for free; hospital clowns roam the halls (and seemed to follow me wherever I go..); the t.v. in the waiting room was always tuned into Clifford or Wishbone; there were endless pages to color, and elderly volunteers passing out stickers in the hallways; in most of the waiting rooms there are bookshelves lined with books that patients can take home. Honestly? If you take away the needles, the white coats and scrubs -- Boston Children's Hospital is like a glorified day care center. It is fun! (Please note the use of present tense in that last statement).

In other words, in terms of my health care I have been ridiculously spoiled. I once went to an appointment with my younger brother and was shocked by how silent his doctor's office was. In comparison, his doctor's office seemed frighteningly stiff and serious; I decided at that point that I never wanted to stop being a patient at Children's Hospital.

I am no expert in healthcare options but I assume that because O.I. is generally diagnosed at birth, or during childhood years - it is therefore considered a pediatric condition. This makes sense for why many of the specialists that I see are at Children's Hospital -- they know what it is (usually), and know how to treat it. But medicine is changing, there are now many adults who have O.I., those patients who were once diagnosed with the pediatric brittle bone condition are now grown-up adults...myself included.

My orthopedic doctor has been my go-to guy ever since birth. Among my family we have tried many times to play the "guess how old Dr. Shapiro is?" game and we are never certain, and he's not the type of guy to give away his age. The general consensus is that he's old, probably around his 60's at this point - and maybe even close to retirement age? *Gasp* I dread that day when he tells me he is going to retire.

Who will I go to? Will I have to explain how exactly to hold my broken leg? Will I have to explain just the right combination of pain medications to prescribe? Am I going to have to tell someone totally new about why I hate wearing slings? Will this new doctor have a new attitude towards surgeries and operations that I don't agree with? Will Dr. Shapiro's replacement be as willing to write the kinds of medical-need notes that I request? Is he going to be as flexible about allowing me to call his pager directly? There is so much that I dread when the moment comes. I hope it doesn't happen for a very, very, very, very long time. Dr. Shapiro is like my second dad, I wouldn't know what to do if he suddenly decides he wants to retire to a life of watching hockey, and return to Montreal.

But of course I won't deny the fact that there are some parts of me that do require adult health care; and a few of my physicians at Children's Hospital have been kind enough to nudge me in that direction "Sandy, you know, you're not a child anymore -- although of course we would be happy to continue to see you, and we are not trying to push you out of the system.." I appreciate their kind nudging into the more boring adult hospitals. I will miss the sounds, the noise, the colors, and yes - even the clowns. But I am slow-creeping upon a dreaded realization that a part of being an adult also means knowing what is right for you, and accessing what is right for you. Taking the initiative to say "okay, I am no longer a child and want to be treated as such.." means much more than being disgusted when we are spoken to in a condescending manner. It means more than getting upset when I am asked "where is your mother?" It means recognizing for myself what it means to be an adult inside and out.

So what I mean to say is.... I'll get there eventually. Sooner rather than later.