I’ve always believed that God can use anything for His purpose, no matter how ugly or tragic it is on its own. He is definitely using the Facebook community for those who love someone with HLH. He’s even using me in that venture, something I’d have never expected to be part of in a million years.
I’ve written about this group before – they were a godsend of information and support when Megan was diagnosed with this rare disease. I’ve stayed a part of this online community, even as she has gone into remission. I’ve thought about leaving it behind as we try to move on, but I can’t do it. Being part of this group includes the occasional gut punch that makes me want to throw up, when I read of a new diagnosis or worse. But these people are now a part of my life. I know more about some of them than I do about some I call friends. But there’s more than that to why I can’t walk away: I feel like I’m serving a purpose there.
I welcome every new member and offer them a prayer, even while I tell them that we wish they had no reason to be part of our group. I comment on the photos that parents share of the children that they’ve lost, telling them their children are beautiful. I use present tense on purpose: that’s what parents want to hear…for them, their child isn’t gone. And I try to be reassuring when someone just needs to vent. Heaven knows I needed someone to listen to me, back when I was struggling to process everything.
The group has turned into a five minute a day ministry. I don’t know if I’m doing anyone any good with it. Actually, that’s not true: it’s doing me good. We had tremendous support from family and friends as we went through our ordeal, for which we will always be beyond grateful. Even so, there were countless moments when I felt completely helpless and alone. No one can really be there for you at 2:00 in the morning, when you can’t sleep from sheer terror because the doctors have no idea what is wrong with your child, and you know that she is dying as you watch. No one can remove the stress of managing the details of every day life or holidays with your family split right down the middle, hundreds of miles away. Though we were well supported, I know what it is to feel utterly alone. That’s why I can’t abandon this small group. In ministering to them, I am somehow being healed myself.
“The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing…not healing, not curing…that is a friend who cares.” –Henri Nouwen