What a strange thing to think about: Death. And then to think about a child dying…who does that?
See, my daughter has a large mass in her brain. Death has become something I think about just about every day. Just small glimpses of “what ifs” creep into my thoughts.
Don’t get me wrong, I try to spend most of my time in positive thoughts. I celebrate how far she has come and that she is even with us at all. But the darkness is always lurking.
Today, she’s doing so well and she’s so happy and spunky. If you didn’t know her past, you wouldn’t think twice about the little girl you see on the playground. In fact, she’s doing so well, you might wonder why I’m even talking about this. Right now, her tumor is stable and she’s off of chemotherapy. We don’t have to go to the hospital or doctor often. So why does this still burden my thoughts?
Because for 2 years, I could not let the fear in. It was too close and I could not allow my mind to go there. We had days in the hospital when doctors were unsure of her future or if she would even leave the hospital with us. We had emergencies that stacked odds against us. And through it all, we always stayed hopeful. The face I put out to friends and family was one of confidence that we would survive.
Now, some days, that confidence shrinks back and the fear is heavy.
We know that her tumor will likely grow again. We know that surgeries have their own long list of risky possibilities. We know the chemotherapy she has already been exposed to and others she could experience have harmful long term side effects.
So, what will it be?
Will this brain tumor take over? Will a secondary cancer move in? Will she experience brain damage at some point? Will the chemo cause heart conditions, kidney failure, liver failure, or the failure of so many other possible organs?
Or will she survive? Will she leave this life of hospitals and thrive for a long lifetime?
I so desperately want the latter to be her story. But, if I’m totally honest, the other questions rattle in my head daily, too.
If you know someone who has a child with a chronic illness or major diagnosis, it’s likely they think these things, too. They may not say them aloud and they may never truly want to admit to them. Things may seem to be going well and you may think they are over it. But the truth is, a mama’s mind is never over it. The fear you live through can haunt you forever.
If you know someone who has a sick child, reach out. Be a friend to them. Let them know you are there for them to talk about whatever they may need to talk about. Know that their thoughts may be hard to hear but allowing them an outlet is so therapeutic and helpful.
If you are the parent of a sick child, know you are not alone. The thoughts and fears you have are normal. Try not to live in the fear and try to find supportive people to surround yourself with. Try to focus on the little girl on the playground instead of what she might become. Whatever you do, don’t miss who she is right now.