Way back when I joined social media, one of the first things I did was seek out others with the same diagnosis as my daughter. A quick search for Arthrogryposis (after I learned how to spell it) landed me in the Arthrogryposis Moms group where I met 100 or so of the ladies who are now my very best friends. The group has grown to over 1,000 now, and I have to admit that I don't know everyone anymore. But our group is still a special place for moms of AMCers (people with Arthrogryposis) of all ages to share joys and frustrations, ask questions, seek out recommendations for the best doctors, get ideas for what medical equipment might work for their kids, and find tips and tricks for "hacks" to make life easier.
Our community is more than just a Facebook group. Although we may have originally connected online, or stay in touch mostly with our screens, many of us meet IRL in hospital waiting rooms while our kids are treated by the same doctors. We stay in the same Ronald McDonald Houses for weeks on end during and between long medical treatments. We gather each year at our annual convention or smaller mini meet ups to learn from each other and enjoy each other's company. Although we are connected because of our children's disability, we are now family.
And it is because we are such a tight knit family, despite the distance between us, that it devastates us all when one member of our family experiences the death of a child..... or, worse... two families in two days.
If you have never been a part of a community connected by something as unique as the disability or medical condition of a child, it's hard to understand how an entire community can grieve the loss of someone else's child. But when we hear the news that one of our precious children has gained their angel wings and joined the ranks as an #ArthrogryposisAngel, our collective heart as AMC Moms and Dads breaks a little bit. Each of us thinks first of our fellow Mom and/or Dad who just had to say good-bye to their precious child and grieves with our friend for what they are going through, whether we know them well or not - whether we have met them in person or not - because we share a bond based on raising a kids with such a unique condition. As the days go on and we go about our daily routine of caring for our kids, it's impossible to not think of the families who no longer have their children with them, and, with those thoughts, we continue to grieve with the parents and siblings.
But then comes the fear- If this could happen to another child with the same condition as my child, could it happen to my child, too? It's only natural for parents to be afraid for their own child when hearing the news of a child with a similar condition, dealing with similar issues, passing away far too young. The fear can be crippling and can stop you in your tracks at unexpected moments.
The hardest part of all, however, might be explaining to our own kids about what happens to their friends when their bodies simply stop working. My 11 year old has had to say good-bye to far too many of her friends for a kid her age. It's so hard for her to understand.
Just as we grieve together, however, we will support one another in the grief. The same online groups that exist to provide advice and daily support are there to lift each other up in the tragedies. We will drive to be with one another at memorial services and "just because".
My daughter once asked me, "Why do I have Arthrogryposis" and my answer to her was, "Because if you didn't, we wouldn't have our Arthrogryposis family." I honestly meant it. Our AMC family has become as close as biological family could ever be, even when we grieve. I am grateful to have my family, as together we grieve.