Another child passed away this morning from Sanfilippo Syndrome. I have never met the family, but we have exchanged messages through the years. We have liked one another's photos on Facebook. We have connected through the keyboard many times. My heart breaks for them.
My most recent blog post was about grief and social media. I suppose this is going to become a continuation. The internet and especially Facebook has allowed communities to spring up. Families affected by rare diseases have found one another online. We can share tips on medication or equipment, the best diapers for overnight, exchange items our children have outgrown. Through all of these posts and messages, relationships form. Friendships are made and connections deepen with those you find common ground.
I am so thankful for those women who have gone from profile pics to true friends. We text and call one another. We have vacationed together and met for dinner whilst passing through towns. We show up for special events. And we are there to mourn together.
It is risky to enter into these communities. Not only do I have to watch the disease ravage my two children, I also have to see it ravage my friends' kids. Girls and boys I have grown to love over the years succumb to the disease and I grieve. And each time I am faced with grieving Waverly all over again.
As a form of self-protection I limit my contact with newly diagnosed families. It is not because I don't care, but rather I am not sure my heart can take bonding with another terminally ill child. It hurts to watch another family suffer.
So this is another public service announcement for those entrenched in rare disease. It is okay to say enough. It is okay to retreat and put up some barriers. Protect your heart. This journey is difficult enough.