Trying to Make Sense of Everything I Felt on Diagnosis Day


Dear me on December 3, 2013,

Oh, you sweet girl. My heart breaks for you still every time I think about this day. And because of this day, your heart will break for others, over and over again. This pain you’re feeling now – it’s a pain so many others have felt and so many others will feel, and you will know — you will know — what they are going through.

It’s hard to think clearly at a time like this, so maybe it will help if I explain a little about what you’re feeling. You’re feeling loss. The baby you thought you knew is gone. You’re mourning your loss — the loss of the life you were anticipating, the loss of your perfect little boy. You’re feeling sorrow. There’s so much you don’t know, so much you can’t plan for. You’re afraid of what your future holds and what life will look like for your little one. You’re feeling fear. You’re feeling like nothing is in your control. You don’t know how this happened, and poisonous thoughts come creeping in that somehow it’s all your fault – you’re feeling guilty and ashamed. You’re feeling lost.

This will probably be the hardest day of your life. Even so, there will be more hard days – oh, some days will be harder than you could ever imagine. Sometimes those days will turn into weeks and then into months. You might feel like you’re in a fog, the way you feel right now — like you’re in a vacuum or a black hole. It won’t be easy.

Right now you’re wishing you could see the future. You’re wishing for a glimpse of a year from now or even a month from now or even a week from now.

Know this – you will survive until tomorrow.

And then the next day and then the next. Even when you’re sure you won’t. And then the day will come when you emerge from the fog, when you find your hope. The day will come when you step out of survival mode and you start really living again. The day will come when you and your sweet little boy go on an outing for just for fun – not to the doctor’s office, or therapy, or the pharmacy but somewhere optional. And you will have showered, and you will be wearing real clothes, and you will think, “I am a rock star mom!” And that little boy who you replaced your perfect little one? Oh my goodness, you will think he’s the most brilliant and the most beautiful and the most wonderful being to ever grace this Earth, just like every other mom. Someday he will smile at you, and your heart that is so broken right now will melt and burst at the same time.

You will survive all this, and come out on the other end a more patient, stronger, wiser, better person. And your son’s life will be amazing – because he is amazing and because you are a rock star mom!

diagnosis day

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