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On the Days Life Stands Still With My Daughter's Rare Disease, I Write Myself This Letter

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A letter to myself:

Today, life stands still. Today, you will wonder what on earth happened in life for this enormous, life-changing, frightening diagnosis to be placed at your door.

And what could be worse? That it hasn’t landed at your door, it’s landed at your precious 2- year-old little girl’s door. Your baby, the reason you get out of bed in the morning. It’s a tough pill to swallow.

You will feel angry.

You will feel helpless.

You will feel more sadness than you ever thought possible. It will, at times, take over every single thought you have in a day.

You will have so many questions, and you will fear the absolute worst sometimes.

But you will also feel enormous hope.

You will feel determination.

You will feel overwhelming pride in your tiny human, and you will feel heard.

You will follow your instinct that mother nature gave you, and you will trust how you feel.

You will make the breakthroughs and get the clinical referrals that your child deserves.

You will feel that this diagnosis will determine your child’s quality of life — what she can and can’t do. Some days you have to just embrace the sadness, the pain, the frustration.

But for the rest of your days, you will feel optimistic and determined to not let this define your child.

Your strength as a parent will shine through and you will steer your child through the uncertainty and frustration that she will also feel.

You will teach her how to live a fulfilled life.

Yes, there may be certain boundaries, but this diagnosis will not get in the way of your beautiful daughter’s hopes and dreams.

She can do whatever she wants to do and she can be whoever she wants to be.

She will adapt. She won’t know any different than having a hospital appointment every week.

She will have a life-long relationship with her childhood doctors.

Even at 2 years old, she’s already got this.

You will help each other along the way.

It is not the hopeless, uncertain and lonely road that you think it will be today.

Stay positive and be kind to yourself, because you’ve got this too.

Originally published: October 28, 2018
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