” Family is like music. Some high notes, some low notes. But always a beautiful song.”
I have a huge family – I mean tremendously gigantic. I’ve never even met most of them and probably never will, because there are over 300,000 units of my family all across the Unites States. Every region, every state… the branches of this family tree are massively widespread, but we all share the same basic trunk.
They are my Juvenile Arthritis Family.
In another life, another circumstance – many of them would probably never know me, and may not even want to. They might find that my thoughts on religion and politics are drastically different, and my views on gun-control or gay marriage might make them want to “unfriend” me. I might be from a different generation – so old to some, just a pup to others. My personality might be a virtual cheese grater on their soul and conversely, I might find their glass being half empty most of the time incredibly frustrating. Or vice-versa, depending on the perspectives. My country music might never make the rotation on their heavy metal playlist, and we may never agree on what pizza to order – if we could even agree to order pizza in the first place! I might be geographically distant, a west coast girl totally unfamiliar with midwest sensibilities, and life in the south. – We might have virtually nothing in common….. except for one very important thing.
Perhaps the most important thing.
We all understand what it is like to have a child living with juvenile arthritis or another form of auto-immune disease. And because there are 300,000 children living with arthritis across the country, there are at least that many family units that understand something fundamental about me and my immediate family. They understand it completely without me having to try to find the right words to explain it. I understand them in ways that maybe their own extended family or colleagues can’t. Quite simply, we get each other.
Though every journey begins differently, we all understand the fear of those dark early days. We share many of the same struggles, fears, challenges…. and we have this thing in common that perhaps none of our other friends can truly understand. It’s hard to really understand until you have walked a mile or two in those shoes… but we have all had the same shoes. We share this life living with JA, and this unquenched desire to find the cause, and find a cure. Because of this unique connection, wired around this one thing that I am most passionate about, I consider all of these people like extended family. It wasn’t a choice, any more than you got to choose the family your were born or perhaps adopted into (with a few exceptions I’m sure). JA certainly wasn’t a choice – but we are family, nontheless. This is why I have often referred to the JA Conference as a family reunion.
Like within my own exquisite and unparalleled family, and close groups of friends – We in this huge JA Family come to each other to vent, to get support – to get advice. To share victories, hopes, aspirations. We share tips and tricks, tools and complaints, and we offer each other a virtual shoulder or ear, when sometimes one cannot be found in our own closer circles. I always hope that my JA family will be a safe place to lay bare my true feelings about this journey – that even if our treatment choices are different, our thoughts on diet and nutrition are different, even if you don’t like the charity I choose to support, or we don’t agree on public health care policies…. I hope that our discourse will not become any more heated or hurtful than a debate around my kitchen table. (Believe me – those push the envelope frequently, but everybody hugs it out in the end!) We are all human though – and we do have lives much bigger and broader than JA… so it’s natural that we will rub each other the wrong way from time to time, and maybe not choose the best words. But I hope we always come back, with respect and kindness – just like family.
Because- at the core of it all – we are warriors with the same mission in our hearts and minds. We want a CURE for our kids. We want the best life possible for all of our kids, with the fewest limitations and the most joy possible… until we get a cure. For me, that pretty much trumps everything else – every other difference of opinion we may have. That is the MOST important thing – almost without fail.
When trouble comes, it’s your family that supports you. And that’s why I am so fortunate to have this tremendous extended family to help me along this way.
Cheers to my JA Family!