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Long Overdue and Not Nearly Enough

Posted Aug 21 2009 12:39pm
Okay, so I think it's time we here at A Matter of Life and Breath took a second to recognize all those crazy, wonderful, brave, funny, smart, interesting, and, um, well, frankly amazing people who make our lives as cystics possible.

In other words, this post is going to be about my family.

I feel like I need to do this for a couple of reasons, the first being that my mom is currently living with me in NYC (more on that later) and just really deserves a shout out. The second reason is simpler: although my family does not, at least for the most part and to the best of my knowledge, read this blog, they are a HUGE part of who I am and where I come from. So I feel like I can't explain much more about my life and my CF and this whole crazy transplant journey thing without explaining who they are, too.

Yeah, I know, when most people think "lawyer" they probably have visions of men in pinstriped suits springing fully formed out of a crack in the middle of Wall St. (because surely if there's a gateway to the underworld it must be somewhere in lower Manhattan), but surprisingly there's not a lot of truth to that rumor. Not in my case anyway. I actually sprung fairly under-formed (or, at the very least, underweight) from my nest on the day after Thanksgiving, and into the arms of a very cool group of individuals consisting of my mom, my dad, and my older sister, not to mention a rather snarky English Sheepdog named Amanda. I was born, it was love at first sight -- from my perspective anyway, although the look on my sister's face when my dad snapped a picture of her "meeting" me for the first time tells a slightly different story -- and 6 weeks later we suddenly all had new identities.

We became a CF family.

I always think about the story my parents tell about my diagnosis. I was in the hospital, sick with pneumonia, meningitis, and failure to thrive and my parents were, understandably, scared out of their minds. They were sitting in my room feeling tired and helpless when a little girl pushed her IV pole up to the door and started chatting with them. My parents think she was about five years old or so, and the main thing they remember about her, besides her bright smile and the way she cheered them up with her visit, is that she told them she had a disease called cystic fibrosis. So my parents, being diligent nerds (ahem, I mean scholars -- but at least I come by it honest!), immediately went home that night and looked up CF in a medical dictionary. And then my father wrapped his arms around my mom and said to her, "well, at least our daughter doesn't have to go through something like THAT." We got our diagnosis the very next day.

It's crazy to me to think that from that conversation and the bombshell that was dropped on them the next day my parents evolved into full-scale CF warlords. I'm not kidding. Those two are fighting this disease and they are out for BLOOD, and after 28 years of it they don't show any signs of slowing down. If I can brag for a second, my parents have organized fundraisers, sat on boards of directors, advocated in politics, and won a well-deserved Breath of Life award in Colorado a couple of years back for all their CF dedication. Which is all pretty impressive, obviously, but it pales in comparison to the awards they should have received for putting up with the world's most stubborn CF child. Because, no joke, CF has been a battle for me since day 1 as well, but for me it was always about being "not sick" and avoiding at all costs anything that made me look, feel, or act "sick" compared to my peers. So while I was perfectly willing to push myself to excel in pretty much any other activity, let's just say treatment time was never my finest hour. I don't remember anymore whether my parents had to forcibly restrain me to sit with my nebs or tie me down to our CPT table, but I do know that they kept me healthy throughout my childhood and well into my teens even up against some very challenging obstacles. And when they do finally institute the Nobel Prize for hand-to-hand combat in CPT, I'm pretty sure my parents are going to be on the short list, for which I can now (finally) say without any irony that I am COMPLETELY grateful.

As for my sister, I have no idea what it's like to grow up with a "sick" little sister, but I'm guessing her perception of it is that it's not too different from growing up with a not-so-sick sister, because she always faithfully stuck by her conviction that I was not to be treated any differently from any other younger sibling/crash test dummy/scapegoat/servant. (On a sidenote, my sister is the one person who DOES occasionally read this blog, and I threw in that last bit entirely out of love . . . and honesty . . . but mostly love.) She's basically as stubborn as I am but tends to use it in more productive ways, and her main message to me growing up was that if I could look to her for guidance but still act like me (and not, for example, try to steal her clothes or CDs at every chance), I'd be doing something right. As usual, she was pretty dead on with that point.

So after 28 years of ups and downs and misplaced PICC lines and exciting new drug developments (and some drug letdowns, let's be honest) and fundraising and enzymes in applesauce and transitions from cpt to percussor to autogenic to flutter to vest and back to flutter and to IPV and back to vest (with some occasional CPT and IPV thrown in for good measure); after one extremely dramatic port placement during which I insisted that there was no way that thing was going anywhere NEAR my chest (I totally won that battle) and one clinic that just didn't work out and four scary years of trusting me away at college and countless home IVs and multiple hospitalizations and one epic fail of a right-heart cath; after sleepless nights and coughing fits and tears and really really uncomfortable hospital beds; and after promising me that I could take on the world if I wanted to, that CF was no reason to stop living or dreaming, that college and all my dreams after it were totally within reach, and that they would always be behind me no matter what . . . my family is still here, not so much behind me as beside me.

My mom is living in NY to help me through transplant. My sister holds a full time job as an incredible fashion designer for a successful new company and still manages to make it over to my apt several times a week for Top Chef or dinner, and she recently nursed me through some fevers that were quite frankly not for the faint of heart. My dad (another lawyer, just in case you thought that CF is the only genetic defect that runs in our family) is still holding down the fort in Denver, but rearranging his schedule so that he can be here as often as possible. Even my godmother has flown in from Colorado to help me through some of this pre -transplant/infection bonanza madness. And while that sometimes makes for a very crowded apartment, it also makes for a lot of peace of mind. Between my amazing family and my indescribable friends, I was once told by a member of the Columbia team that I had "the best support system" she had ever seen, and I didn't know what to say aside from "thank you."

So while they may never read this, with the possible exception of Erin, I guess it's time to extend that compliment to the people who really deserve it. I know that my diagnosis has always been and will always be, just like the genes that caused it, shared by my entire family, and I could never express how lucky I feel to have that help in shouldering the load.
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