I read your e-mail in the middle of the night, awake with Charlie and Nash. Charlie gets his days and nights mixed up, sometimes due to a seizure, sometimes just because he’s Charlie, and wakes up the whole house in his special, silly way.
My heart sank to read all that you’ve been through with your pregnancy and the baby. I can relate to so much of it. I know your grief and despair. What a thing this is, an unspeakable, agonizing, all-consuming pain. The weight of the world is on you, added to that your work situation, and it seems like it will never, ever, end. Unrelenting and cruel.
What could any of us have ever done to deserve this? Or prepare for this?
You are using mental and emotional muscles you never knew you had, and it makes you ache all over, all the time. I have heard myself make noises in the midst of my grief that I imagine only dying animals make. I have felt myself crack down the middle. I have said things to hospital workers that I never, ever imagined I would say. I have fallen to my knees, sobbing and praying in front of strangers.
But something happens after a while. Eventually, it becomes a part of you, part of the fabric of who you are, and you will do things, good things, strong things you never thought possible. I am sure that this is already true for you in small ways, but you have so much better in store for you. Getting up at 3 AM with a seizing child has become something I can do while reading an e-mail from a friend in need, tending to an infant, and thinking about our future with hope and optimism. This will be your life one day, too. You will feel normal again, a “new normal,” but it won’t be as difficult as it is now. And you will always mark time with this event. Before Charlie. After Charlie.
I know the “if only” game very well, and it will always be with you. In time, you will find purpose and some semblance of meaning in this tragedy, and that will slowly edge out some of the guilt and remorse.
As you said, you have a new life. You are now, and forever, changed. Changed was not my goal. ‘Changed’ is too small of a word for what this does to you. For me, transformation, not change, was the goal. Let the transformation take you over, as if to stand in a wind tunnel, as if to conjure fire, and let go of anything about you, any pride, vanity, insecurities, people, anything that stands between you and every bit of help and support that you need. Don’t let anything get in the way of this transforming you into the best version of yourself that you can be. For me, once I let my guard down and allowed people to see me when I was vulnerable, when I wasn’t in control, when my house was a mess and I didn’t look good, the whole world opened up. Find whatever that is for you and confront it first. Do this quickly, as you will wish you had done it sooner.
You have earned the right to be exactly who you need to be to survive this, and, from now on, no one can deny you that. They don’t get to judge you, they don’t get to second-guess you. Find the power in that. Only you are that baby’s mother. Only you have endured this war, battle after battle. Like any other hero, you are now untouchable. This confidence will carry you when nothing else does.
This is the defining moment in your life story. It might not feel like it on the inside, but you are handling it with poise and grace. You are making excellent, rational decisions despite your unbearable grief and exhaustion. You are doing everything right. You are asking the right questions. You will have no regrets about this period of your life, as you have risen to the occasion and met this challenge like the excellent mother that you are.
You are proving yourself to be the woman you always hoped you would be.
As hard as it is to have your life hijacked by a child’s catastrophic illness, the silver lining is, there is an ENORMOUS network of moms and dads just like us who know EXACTLY how we feel and, like me, live to help each other in times of need. The world is about to get so much warmer and more understandable. Just you wait and see.
I AM VERY, VERY PROUD OF YOU!
Someday, at 3 AM, while reading an e-mail from another mother in need, you will look back at yourself with pride and wonder, just as I did last night.
You are loved and admired,