When you're part of the special needs community, there are a lot of positive benefits; people to support you, those of whom you can ask advice, many who have already been where you are or have what you need, etc. However, there's also a down side. My child doesn't have a fatal disease. She is not medically fragile, and doesn't require multiple stays in the hospital. But many other children do.
Earlier this week I posted Broxton's eulogy for my Special Needs Spotlight. You might remember a couple of months ago my post about his funeral. And a few months before that I wrote that I was a little jealous of Kristi (Broxton's mom) because she wouldn't be spending a lifetime worrying about IEPs and wheelchair accessibility.
I take it all back.
I said those things out of ignorance. Now that I've witnessed the actual event of slowly losing your child and having a funeral for your baby, I would gladly have a lifetime of wheelchairs and IEPs vs. hospice and a funeral. And I think Kristi would agree with me.
Now we are all watching in horror as another of our Mighty Moms loses her child slowly to Mitochondrial Disease. And there is a second family also on hospice, who is thankfully not declining as quickly. How do you encourage a family who is going through this? What do you say? How do you even mutter words about how big God is or how He holds their little ones when they have a hard time believing in any kind of God who could let something like this happen? ...to a child.
To THEIR child.
It's all so heartbreaking and sad.
But that's not all. I have two other friends whose children are in the mental health ward at the children's hospital. 6-year-olds who are under close watch because their mental health is a risk to themselves and others around them. 6-year-olds who are taking lithium because they are hearing voices in their heads. And I don't know which is more sad; knowing your 6-year-old is so mentally ill she has to be hospitalized, or being visited regularly by a hospice nurse because your child is slowly deteriorating before your eyes.
It makes all my complaining about getting bigger and being hot seem like nonsense doesn't it? I remember near the end of Broxton's life I would wait anxiously for a Facebook post from Kristi giving an update. Meanwhile there'd be posts from people about having a tough day at work or their child who got in a fight at school, and I'd want to scream, "DON'T YOU KNOW THAT A LITTLE BOY IS DYING?!!!" It was hard for me to even be happy for the people posting about good things going on their lives...because everything seemed so sad at that moment.
Do you ever get used to attending a funeral for a child? Does it ever feel normal to go about your daily business cooking dinner and mopping floors when your friends' children are dying? Do you ever stop thinking about it when you know there is a 6-year-old in the psych ward at the hospital? My life will certainly never be the same because I had Sadie, and it only makes that statement more powerful because she has special needs. But, surely, it will also be forever changed because I know these Moms who are truly more Mighty than I could ever imagine being.
God Bless all of you who fight daily battles for your children. You are my true heroes.