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To the Person I Was at the Beginning of My Child's Diagnostic Journey

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To who I was at the beginning of my child’s diagnostic odyssey,

First and foremost, I need you to take a deep breath. If I could, I would be there in person to give you a big hug and introduce myself while you sit cuddled up in that cold hospital room with your son. I am you. Well, I am not you at this very moment –I am you in six years. I apologize, as I am not here to completely reveal the future, but instead to give you the absolute best advice you will receive along this long, emotional, difficult, heartbreaking winding road. It will most likely be the only advice you will take. If I remember the way you were six years ago, you can stop rolling your eyes at the prospect of advice. I’m not offering a quick fix, because we know there isn’t one.

For the last month you have not been sleeping as you have been up reading medical journals and watching medical lectures all night. You are 100 percent correct that none of it makes sense and you are not delusional for trying to prove it. Here’s a small, hopeful glimpse I can give you: doctors from all over the world will see what you see too, in due course.

Your heart is breaking, I know, but I can promise that this will become more manageable in the foreseeable future, but only after you take the time to do what you have to do in this grieving process of not having an answer.

You will not truly get to a place of acceptance and peace in this process, until you know that you have done everything in your power to find what you believe to be this “life-changing” answer — even though you now know it will be a minimum of six years. I am currently waiting for a letter over here from the “future” me, but she seems to be busy.

So I’m telling you with honesty and love…

If you need to read, read.

If you need to research, research. Stay up all night, be tired.

Go ahead and push yourself away from friends, family, happiness and even life to allow yourself to hit rock bottom on this unpredictable emotional roller coaster.

Why? Because it’s that lonely space that will eventually bring you true peace.

Finding your way back from that deep hole is how you will be able to fully appreciate where you are today. While the answer is actually trying to find you, you need to find your way back to your friends and family for now. The ones who will be there for the long haul will be patiently awaiting your return. Let them support you, but also know that you can set boundaries at anytime and never feel guilty for doing so. After all, isn’t that what good friends and family are for?

I want to reassure you that there is absolutely nothing you can do differently in the quest for an answer to change the outcome of where you will be today. Nothing. My advice, which will
be different than everything you are hearing, is to do what you need to do in these moments. That is actually where true acceptance will lie. And it is where one day, even without a solid answer, you will find peace.


Your future self.

Originally published: March 9, 2019
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