It has been almost six years since a doctor told me that Madeline was blind. I remember everything. What I was wearing. What he said, exactly. The 6,704,870 thoughts I had on the drive home. Some traumas turn into blurs; this one is emblazoned on my memory.
In my wildest hopes I would not have dared to image Madeline as she is today.
This is what I would tell six-years-ago-me, if I could.
Kate,
Everything is going to be okay.
Right now, in the future, Madeline is watching The Magic School Bus episode about outer space. That's right - she can watch TV. She sits really close on her little red footstool, and she has two younger brothers, with perfect vision, who also sit close because that's how their big sister taught them to do it. (They also took their first steps with a white cane, which was adorable.)
Here is what I want you to know, young, scared Kate.
Madeline is going to have friends. She is going to run - fast and hard and fearless. She knows braille. You know braille. It is hard, and you're going to cry and quit for a little while, but when Madeline is in kindergarten, you help her with her homework and you both read it pretty effortlessly and everything is okay. (Incidentally, Madeline is going to surprise you all the time with the things she can see. Even when she is six, she will still be surprising you - and every doctor and teacher she has.)
You've never cried in an IEP meeting, or after one. Only before - because fear of a thing is almost always worse than reality. Try not to worry.
Madeline is incredibly bright. Her vocabulary is enormous - annoyingly so. But she's not just smart-bright; she's a sparkle. Everything in her whole life is over-the-top big. She says things like:
"I know I have a lot of days left to live, but I know that no day could possibly be better than this day."
"I will listen to you, I will listen to teachers, I will listen to anyone, even after I DIE I WILL LISTEN."
"The only thing better than your painting is GOD."
And "Pluto is the most important planet in my life."
She is some kind of special; people are drawn to her.
There are so many bright, happy things about your life. Here is the most important thing:
Darling, do not fear what you don't really know. Do not grieve for things you have not lost yet; you may not end up losing them at all.
Madeline's middle name is Hope - you had no way of knowing how perfect a christening that was for her, but I am here to tell you she has lived up to it in every way. She has been spreading hope, warm in the hearts everyone who has the privilege to watch her, for six years now. For six years, just sparkling and hope-spreading: hope to families touched by ONH, hope to teachers, hope to doctors, hope to friends - hope to everyone.
Don't worry. Don't be afraid. It gets better. You get better. You are carried on rhythms of grace, on the backs of friends, and on prayers of the faithful the whole way - every step. Every hard-fought step, every uncertain step, every hail-mary, God-save-us step, you are carried.
Life is brutal and it is beautiful; Glennon Melton calls it brutiful. And, God, is it ever.
But you can do this. You are doing it, and you are doing a good job. Darling, do not fear what you don't really know.
love, present Kate
P.S. She does eventually learn to buckle her seat belt and put on her own socks, so don't sell her; she pulls through.
(All photos by Brooke Courtney Photography)