Dear 3 years-ago-self,
Today you will meet the Dr. who will tell you what is happening inside of your baby! Don't be afraid. Or do. Either way it is ok. And it's going to be. Today you will meet a man who will seem a little mad. He will look at Mabel top to bottom. It will seem as if he notates and marks every little thing about her and it will make you feel both uneasy and thankful. Until now, you've not had one doctor who will take the time to listen to you like he will, run the kind of tests that he will, or make you feel like she's worthy of an answer more than he will. Dr. S will solve the mystery for you in just 3 short months if you simply take Mabel into his office today and let him.
He will find the thing inside of her.
And he will give it a name.
For awhile now, almost a year probably, you have been knee deep in grief. You have drowned yourself in the unknown, the complicated, the guttural and the inescapable. You have exhausted yourself, and every resource thus far trying to find the answers. It wasn't time yet, but it's time now. Today is the day that will change everything. Don't be afraid; the afraid can be over. Today you should be excited! exhilarated! Today will be life changing and you will never forget it. This is the day when this doctor will look at you, listen to you, be honest with you, and forge ahead beside you. This doctor will name the thing inside of her.
In just 3 months, you will know that Mabel, your baby, has batten disease.
A life altering, mind blowing diagnosis that changes everything but changes nothing. Because even without the name, you have fought for her, you have cared for you, you have loved her beyond explanation. The name of the thing doesn't change any of that.
But the name will bring you peace. It will shake you out of grief. It will open your eyes to who she really is. You will feel the mystery be solved and you will feel your heart resolve. You will wake up from sadness and sorrow. Your eyes will open soon after her diagnosis and you will feel new again. You will feel alive again.
If I could tell you one thing about this day it is that it is all going to be ok.
You will receive a terminal diagnosis for your daughter in a couple of months but you will find some sort of strength in it that is unmatched. You will begin to mentally prepare her funeral with peace and with ease because you will be able to accept the thing that once did not have a name but now does. You will be able to accept batten disease because it is known in her. You will be able to move forward in her life, at the prospect of her death because you know with certainty that those things are both full and true for her.
Her life. And her death.
They are both vibrant. They are both part of her. Just as you suspected, but no one could tell you wholly. Today, you will meet with a doctor who will call you in a few short months and confirm what you have suspected all along- "Mabel has a terminal disease. But it doesn't change who she is. She is the same today as she was yesterday. She is yours."
Today you will meet a doctor but and you will meet a friend. And in three years, when she is still alive and beautiful as ever, he will still be calling you. He will still be running tests and doing research because there are parts of her that are still a mystery. And you will be ok with that in 3 years because you will then know that you have an amazing team of people who are not only as interested in her as you are, but who love her like you do. Who are intrigued by her, and who find her life worthy of answers. This will constantly remind you that you are on the right path, the path that God laid out for your life. It will make you feel incredibly surrounded. In three years from now, you will be far less lonely. In fact, you will be more than ok.
In three years from now, Mabel will almost be 5 years old. She will have lost all of her skills. She will need 100% care. You will have to assist her in pooping, you will have to carry her everywhere and prop her head as it will have begun to hang more. You will be essentially homebound with her, especially in the winter. She will have lost the ability to eat and be totally tube fed. She will still be 18 pounds, not having gained any weight. Her seizures will have increased and will look & feel much more scary to you. She will go through long phases of intense crying, sometimes for 10 hours a day, and long phases of extreme lethargy, each unpredictable and taking their toll on you. Emotionally you will adapt to each of these things far better than you could have anticipated and you will be confident in her care. In three years from now, Mabel will still be alive and the anticipation of her dying will no longer be scary for you because you will not only expect it, but you will understand better what it looks like You will know what to look for, how to handle each change and you will have become an expert on her disease. In three years from now, you will have been so well equipped with knowledge about batten disease that you are completely at peace with her diagnosis, her life, her care, and her death.
Today, meeting with Dr. S, today changes everything for you.
Nothing for her.
But everything for you.
So wake up. Put on your lipstick.
It's going to be ok.
Please don't be afraid. In just a few short years every single thing in your life will look differently. It will not be lonely, it will not be sad, it will not be heavy. In fact, it will all be very freeing. You will walk these next few years with such high priorities, such devotion to your child, such love and authenticity for her life. You will do everything with such purpose and you will trust God in a way that most people never get the chance to do. These next three years are life altering! Life changing! Marvelous! They are sprinkled with all sorts of sadness, yet more joy than you can possibly dream or imagine on this day. But trust me, you will be better.
She will be ok.
And you will be better.
Chin up, sister. Today you are starting the path that will enhance your life. You don't know it yet but it will be such a beautiful surprise. You are tired and you are worried that today will leave you right where you started but trust me, today changes everything for you.
And it's going to be ok.
You're right where you need to be.
Hang in there.