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What We Need (and Don't Need) as Parents in the Rare Disease World

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Our daughter was diagnosed with a rare disease, tuberous sclerosis complex (TSC), at six months of age. It’s left her with tumors on her brain, heart, kidneys and skin. There was no prognosis and no cure. The life we had imagined was stolen from us and we were left with a life that felt less than desirable, and one we weren’t ready to accept. We hated this disease and even pleaded with God to take it away. We didn’t want to be superheroes. We weren’t looking to get an award for being great parents. This was not the life we had dreamed about for our daughter.

I know that trying to come up with the perfect words to say to a mother and father who have had their world crushed cannot be easy. And truthfully, before we were permanent residents of the rare disease world, I would have never known how hurtful some of the comments could be.

“You two are so strong, you can get through anything.”
(I’d rather be known as weak.)

“God doesn’t give you more than you can handle.”
(My heart certainly feels like this is more than I can handle.)

“You were chosen for this because you all are capable of handling it.”
(I did not wish to be chosen, nor did my daughter. I never wanted to be strong.)

“But she looks so normal.”
(That doesn’t take away the fact that she has an incurable disease that is taking over her organs.)

“It could be worse.”
(This feels like our worst!)

“At least she doesn’t have…..”
(I want her to have nothing! Comparing it to something does not make me feel any better.)

“I’ve never heard of that, it can’t be that bad.”
(I hadn’t heard of it either, but that doesn’t make it less real.)

“I can’t imagine what you’re going through but thank goodness she’s alive!”
(Yes, she’s alive. But she’s alive in a body that doesn’t know how to suppress tumors. This is still not what I wanted for my daughter.)

“God’s just putting you through the fire to make you stronger.”
(I feel God is just as sad as I am about this disease. I refuse to belief God has done this to us to make us stronger.)

Let me be the first to say that some of these words have come out my mouth. If you have said variations of these statements to your loved ones, you are not an evil person. You are not inconsiderate; you are a human trying to console a loved one. There is no book for how to love someone who is grieving. In fact, I won’t pretend to be a pro at consoling those who are hurting. I truly believe 99 percent of the people who say these things truly come from a place of love. I feel like when people don’t know what to say in those times, they just start saying things and hope it will make us feel better.

The problem with this is nothing you can say will make this go away. Your words aren’t always the relief to our grief. You trying to understand what we are dealing with isn’t necessary. In fact, many times, we don’t want you to understand, because that would mean you would have to feel the anguish we have experienced. We would never wish that upon you.

I won’t pretend to speak for everyone in the rare disease world, but what I do want you to know is that…

We don’t need you to fix this.
We don’t need you to understand.
We don’t need to hear the bright side.
We don’t need to hear, “You’re so strong.”
We don’t need sympathy.

What we do need is…

A hug with no words.
A listening ear who allows us to communicate the horrible fears we have been holding on to.
A friend who can see us at our worst with no judgment.
An eager supporter when we ask for volunteers to raise awareness.
A visitor at the hospital to take our mind off of our reality.

We don’t need you to fix our problems, we just want you to allow us to share the pain and grief we feel with no judgment. Let us tell you how bad this sucks! Let us tell you how our heart feels like it’s shattering into a million pieces. Let us be sad, mad, fearful and bitter. Allow us to get rid of these emotions that wreck havoc on our soul.

You don’t have to try and fix our problems, or make us feel better about our new world.

We just need you to love us.

the author's family in the hospital

Originally published: July 9, 2019
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