It’s hard to put into words what the JA Conference is
like. I tried to do it in the midst of the conference – tried to stay up late on Saturday night and write about all of the emotions and experiences… but my computer froze, I lost what I had written, and I didn’t have enough left in me to start over.There really aren’t adequate adjectives to describe what it’s like to be with so many people who “get it”. To be in a place where nobody stares at your child if they happen to be in a wheelchair, or in a stroller even though they are 8. Nobody looks twice at puffy cheeks, or bandaids on injection sites, or whispers about a limp or a funny gait. To be around people who understand how hard it is to give your own child chemo medications, steroids, biologics that only have a few years of data to let you know what the risks might be – painful injections weekly, twice weekly, or even daily. It’s hard to explain what it’s like to find a group of people who understand without explanation – without advocacy effort on your part – without having to walk around with a neon sign and speech at the ready – Kids Get Arthritis Too.
It sort of feels like when you’ve been away for awhile – and
you finally come home…. Where everything is familiar, and comforting and safe.
It feels like being with the people who know and love you best. It’s like being with family.
The education at the conference is really important. Even though I’ve been on this roller coaster for 10 years, I still learned new things at every session I attended. But I’ll admit, that most of the basics that would be very valuable to a newly diagnosed family are sort of old school for me. If I had spent as much time in college as I have reading textbooks, reading online, talking to doctors and generally seeking information about juvenile arthritis – I guess I’d have at least one Masters Degree. So, for me…
the conference is about so much more than the education. It’s about what it does for my daughter… what it does for my family, and what it does for our spirit, our hope, our confidence– our strength.
For Caitlin, as I guess it was for most kids there – the conference was all about fun. It was
about swimming, and scavenger hunts, and telling jokes and making wallets out
of duct tape. It was about running with two other teens in the lobby and nobody staring at her limp. Conference was a MOUSE session where they
resurfaced a joint and replaced cartilage, as well as learning that she gets
red in the face after exercise quicker than most, probably due to medication. Conference was mostly Mikayla, Hannah, Emily, Kaitlin, Isabelle, Taylor, Sophia and a lot of other kids who she said she has“more in common with” than most of her “winter friends”.
For me – it was the people. I almost cried seeing people that I have connected to online, but never have met in person. To meet somebody
whose words of comfort have flown in and hugged you during some of your darkest
days… and see them smiling and get to hug them…. Well, there just aren’t words
good enough to describe how wonderful that is.
I also spent a lot of time humbled.. and a bit speechless – because so many people told me they knew me and knew my daughter because of this
blog. I write for me… but of course I want people to read it! Of course, I’d
love to think that something I shared helped somebody sometime! But when I post and don’t get any feedback –no big deal. I wrote what I needed to
write, after all. But people had been listening to me all that time! That
meant so much to me….
I think the craziest thing was that I had three families
that have been diagnosed in the last year come up and tell me that when they
got the word on juvenile arthritis and started searching – Caitlin’s story was
one of the first things they found. (either the walk video, or the story of her
first surgery). Ack! I was horrified at that! I am exactly the kind of person I would NOT
have wanted to meet early in our journey – all those failed meds and two hip
replacements? Are you kidding me? I would have been running for the hills!!!! No, they assured me. Seeing a young girl endure, and still be
happy and have some normal kid stuff going on… well, it gave them hope. It made them feel like their own child was
going to be OK too (Thank you Amy C., for opening my eyes on this…)
I shed tears in sessions, shared hugs in the hall, and
poured my heart out over drinks in the bar.
I commiserated pool side, chatted up during the long wait for the elevators,
and learned from the people who know this stuff the best. I found a whole facebook group of parents
that I had known nothing about, and met “my kind” from all over the United
States (and New Zealand!!!)
For all of you I had the pleasure of meeting, to all the
staff and volunteers who made it happen, for everybody there in body, and for
everybody who sent their positive spirits because they could not be there–
THANK YOU for being my family. You spark my passion, fill my tank and ease my
burden. You are, quite simply, the best.
Caitlin, Mikalya and Hannah after closing session….