Our fears of the symptoms we were seeing from Abigail were confirmed a week ago today. She has an optic glioma on her left optic nerve (a tumor common in NF). It is causing neurological symptoms and has caused her vision to become worse.
The words to describe how I feel aren't there. It seems like it can't actually be real. But, I wake up, and there she is with her glasses. And, questions. Looking to me for security in something that she isn't sure about.
As we try to process all of it, Jason asked the perfect question, 'what is your biggest fear with it?' I thought for a few minutes. And, the thought has continued to go through my mind since then.
My fear is that this steals her innocence. She no longer worries only about the things seven year olds worry about. She also worries about losing all of her vision in one eye. And, chemotherapy. She wants to know if she'll always have to wear glasses, now. Can the tumor just go away on it's own? What will her friends think if she tells them? Will it hurt? Will they do surgery?
And, as I answer those questions, I find myself completely unable to say the words 'we could pray' because my bigger fear is that it will rob her of her childlike faith. What if I say, 'we could pray that the tumor goes away on it's own' and it doesn't. What does she internalize about God? How do I tell her that, from my experience, prayer doesn't seem to change much externally?
I realize as I think these things, that they're really me, projecting those things that have shaken my own faith, onto my daughter. If she asks those big questions, I don't have any answers right now. I just have bigger questions. Ones that scare me. Ones that I've been wrestling with for quite some time. Ones, that I fear, I will wrestle with always, this side of heaven.
I want words, to wrap up neatly, all the hard things in this world, for my children. I want to be able to give them concrete reasons that bad things happen. I want to point to where God is in all of them. I have none of those things. They don't exist. And, when you're on the outside, looking on other people experiencing hard things, it's easy to say, 'well, sometimes hard things happen, and we just don't know why.' But, when you're staring into the big brown eyes of you daughter, and telling her she has a brain tumor, that doesn't cut it. Nothing does. But, you promise to go into battle with her. To answer questions. To hold her when she's scared. And, you say the things you know are true, even when they don't feel even a little bit true. And, you pray that somehow, her little heart is protected for just a little while longer.
Tuesday, August 23, 2016
Saturday, August 6, 2016
'Sometimes, real superheroes live in the hearts of small children fighting big battles.'
Here are a few things that I want you to know as you face the battles that lie ahead. First, and most importantly, superheroes never have to do things alone. Their Mamas and Papas are always right there with them. And, it's true, there are moments when we must hand you over to someone else. Someone who knows more about brains and spinal cords, hearts, spines, and so much more. But, those people are ones we have asked to join you in your journeys to fight your big battles. They are so very special. Without them, we would not have the tools and knowledge we need to help when they're not around. Some of them give us the amazing things you put in your body each day so that you can focus on fighting big battles. Some of them have to hurt you to make you stronger. Those are the hardest for us, too. So it's okay to not understand that and feel so very angry at them. I think, someday, you will understand it better.
Sometimes, superheroes flash their toothless grins when they're in the strong arms of those who help them fly. Those moments are so very special. They are confident enough in themselves to know that it's okay to let someone else hold you up when you're unable to fly alone. (In case you're unsure, none of us can fly alone.) And, you can let other people see the person behind the magic, it doesn't have to be done with hidden wires. Living with the lie that we can do it without others, or trying to hide the man controlling the wires only kills the superhero. It gets swallowed by the fear of being found out. So my three littles, always lean into those arms, spread your arms, and breathe in deep the air that rushes past you as you fly. We will do our best to have our arms ready to help whenever we can. You are some of the very best fliers we know!
It's okay to be unsure. Being a superhero can be both exhilarating and terrifying. The battles you have fought already prepare you for the ones that lie ahead. But, they also leave you with the scars and the dreaded knowledge of what those future things can look like. And, sometimes, the battle is a brand new one. The thing you face may be terrifying. Feel free to wear your uncertain face during those times. You are not required to smile through it all. Being brave means knowing your limits. It means facing things that terrify you. We will be there explaining those terrifying things the best that we can. And, we will be cheering so damn loud as you face them, even if you face them through a screaming, kicking, crying fit. Because small children and adults are allowed to be terrified. This life can be quite terrifying at times.
It's so very okay to not fly some days. It's okay to be the kind of superhero that clings to your Papa and Mama. It's okay to suck your thumb, snuggle lambie, carry your blanket around, and watch sesame street to take your mind off of things. We will hold you so tight during those times. Superpowers often come from comfort objects. They give us the power to face the world again, always remembering they will be there when we need them. There's no shame in getting your superpowers recharged. Being a superhero is exhausting. Put your cape away for a while, and just go back to your regular everyday job of being a kid. You're pretty amazing at that, too!
The truth is, though, that we have no idea what we're doing in these battles. That when we watch you all face hard things, our hearts ache in such very big ways. We are trying to fly, but it's often awkward. We have our unsure faces on. And, we most certainly lean into our Papa, and comfort objects. We want things to be hard enough for you that you can face the world with confidence. But, for whatever reason, our family seems to have gotten an extra dose of hard things. The weeks ahead promise to be filled with some big battles for all of you. No matter how tired we are, how very little we feel like we have left to give, we promise to be there with you through those battles.
Always remember, we can do hard things. You don't have to superhero alone. Really, superheroes lie in the hearts of small children facing big battles with the help, love, and support of the people around them. We just leave that last part off because we are so very proud of how you all face your big battles.
With the deepest of love,