The week that Emily was diagnosed with Dermatomyositis, I logged onto a family computer at the hospital (I wasn't expecting our first visit to the new doctors to last six days) and I found a group invite on my Facebook page. This led to a group of JA mom's all together on one real-time forum. This was like an epiphany. It was just a little bit before this that I met Parker's mom.
They go through so much. I "met" them online first, just after Parker was diagnosed. A few years later and we've shared tears, had our kids (and some of our other favorite families kids) play together. The kids support each other in ways that their well friends couldn't possibly. Parker's mom has become an even larger advocate than me. Their walk team at this past Arthritis Foundation walk raised over $10,000, and Parker had his favorite pro baseball player come hang out with him!
Parker's mom asked a group of us not long ago what one thing we wanted people to know about Juvenile Arthritis. Remember, there are over 100+ forms, and when I say JA, I am also referring to Juvenile Dermatomyositis, Lupus, Scleroderma, Mixed Connective Tissue Disease, Psoriatic Arthritis, Still's Disease, etc. With input from so many different groups, this is the list that she came up with. This explains why I don't make plans, why we always try to see the good in everything, some of the things that we all think about, worry about, and want other people to know. We've all said these things, but when you post them all together in one place like that.... it's powerful. This is one of the best pieces I have personally seen. Please check it out.
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