19 July 2010


Family means many different things to many different people. It all depends on who you ask. I know some of my 3rd and 4th cousins very well, some I have never even met. It can be a strange fact of life for me to wrap my head around, but I think if you need certain people in your life, the world has a way of making them a part of it through whatever avenue it takes.

This past week or so we have had a death and 3 new young ones diagnosed in our little Cystinosis community. Of course the new families diagnosed are only ones that I am aware of, I'm sadly sure there are more, but it breaks my heart each time nonetheless. With all of this going on I have really been aching for the company of these special people; whether it be because of a conference (which I have to wait until July 2011 for), or just a trip to hang out and be our goofy selves.

Indeed there are many ugly facts that come with living with any sort of medical illness or diagnosis; you want to know life expectancy, you want to know what kind of life your child is going to have, you want to know the quality of life your precious one might have, you want to know medications, treatment options, risks, side effects, and so on and so forth. And then something breathtakingly special happens; you meet people going through this journey with you, they might be at different stages, but they understand in ways others truly can't, people who are strangers and yet an hour after meeting them you feel you have known them forever and a day. I've been blessed with this experience many times over my 26 years of this disease and it truly is something magical. I do not know what I would do without my extended family who make up my Cystinosis family. They are there for the little moments, the big victories; like a surprise and previously thought impossible pregnancy and everything in between. They understand dual alarm clocks so you can wake your child up in the middle of the night to give them medicine, they understand medicine that smells and tastes like rotten eggs, they understand doctors who do not know what they are talking about, they understand the frustration and pure hell of misdiagnoses, they understand insurance battles, they understand the battle of a perfect diaper system so you don't have to wake up twenty times during the night to change your child's bed sheets. They understand the daily struggle, the hourly struggle, the heartbreak that your life is nothing like you thought it was going to be. And even though you will reach that state of acceptance, you can mourn the loss of normal for the rest of your life. They understand that, and it is okay. Along the way, they will make you laugh through your tears.

And most importantly, they understand and appreciate a really hilarious vomit story.