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To the Parent of Child With a Rare Disorder Who Just Joined Our Support Group

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Dear parent whose child is newly diagnosed with a rare disorder,

I have debated what to say to you or your family member as you join our support page, because the reality is that you are currently seeking something to keep you continue breathing as you are embarking on this journey.

You are wanting a lifeline, you are wanting something tangible, something to actually grab a hold of — you are simply wanting some hope.

That is fair, we all do when we start on this journey.

We search into the depths of every orifice as the journey begins to unfold and we struggle to regain our grounding as life slowly begins to move forward. It’s important to recognize that the hope you seek, well, that word itself will take on various meanings and forms throughout this journey. In my experience, hope can sometimes end up being a shot in the dark.

Despite what you are considering the potential worst-case to be, the reality is, as you begin this journey you are unable to truly grasp what that even is. The worst-case will morph along this journey.

You will find yourself thinking at various points that this is it, this is the worst-case, but unfortunately, at some points, things might get worse. However, what I can also tell you is that there will always be some sort of lift to help you out of the worst-case cavern you will find yourself in. Sometimes you will be stuck there for far longer than you anticipated. Sometimes you won’t even realize you were there until it is over, and at some point, when the “real” worst-case hits, you will find that you simply have to learn to just sit inside it for some time. It is just a part of life, and as much as we want to pretend these types of situations don’t exist, the reality is, they do.

Despite the potential worst-cases, I implore you to try not to spend your time fixating on what they might end up being.

There are so many amazing cases you didn’t know could even exist that you will also encounter.

What your family has just embarked on is a journey with an ever-changing situation and ever-changing emotions, and it is a roller coaster to say the least.

As you all learn to tackle the ups the downs, all you can really do is ride the waves with an open mind and open heart, and understand that your life has forever been changed.

Still, I promise you, you will find a way to survive, even if at times it is simply by taking a deep breath.

The bereaved mom of a child who was newly diagnosed five years ago

Randi holding her daughter Sonzee

Originally published: May 21, 2020
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