An Open Letter to My Child With A Rare Disease

Firstly, I think you’re perfect.

You are so loved, so cherished, and wanted. I don’t have to try harder to love you as you are. It is natural, unconditional, and you are NO less in my mind and heart. Anything I think I may want to change about you would be for your quality of life, and not at all about you as a person. I would not trade you for the world.

I think you’re so brave-braver than I have ever been. And even when you’re not, that’s okay. You’re allowed to be afraid of the white coats and scrubs. You can cry when it hurts and express frustration when the medical world calls your shots. You are allowed to have weaker moments and feel a variety of things regarding your circumstance. All those different feelings and emotions can exist alongside each other and you’re no less of a person for them.

Even the smallest milestone or achievement makes me proud. I know that reaching them can be more difficult for you than for others. I celebrate with you and beam with pride for you, even at the smallest accomplishment. I know they are big for you, and they feel big to me too! I will always be your biggest cheerleader.

You teach and inspire so many, just by being you. The strength you have found in yourself on your journey is remarkable. The way you handle this part of your life makes me so proud, and betters me as a person. You have shown me a new version of myself by inspiring me every day. Everyone who knows you is better for it and you leave your mark on many hearts.

One of the best things you’ve taught me is to slow down. I find myself grateful for moments that would have passed without notice before you. I appreciate the value of a day now. I enjoy the chapters with attention and presence. I have seen another way, and this has lead me to a richer life than I could have ever built without you in it.

I see you.

I see your fight and I’m empowered.

I see your resilience and I’m in awe.

I see your determination and I am moved.

I see your will to live life as if not much will slow you down and I am saturated with pride.

You have been given a wild card. A rare disease that is not widely understood or commonly known, and you don’t let it define you. This puts you on an island and I watch you build bridges to the mainland with everything you do and strive for. You are changing the world for someone along the way and I hope you know how amazing you are for that.

I love you as you are.

I love you as you aren’t.

And, I love you for everything you’ll be.

Love, me.

3 responses to “An Open Letter to My Child With A Rare Disease”

  1. Mamaw Stacey n Papaw Kirk Holthaus Avatar
    Mamaw Stacey n Papaw Kirk Holthaus

    Our granddaughter Margot Holthaus. She is awesome and has the most amazing parents. We are blessed.. She never gives up. And she is soooooo beautiful and smart. And her brother Lincoln is awesome.

    Not Today Pompe

    Liked by 1 person

  2. Maureen Abberton Avatar
    Maureen Abberton

    Absolutely Beautiful! Such a touching letter that many should read. Thank you for sharing.💕

    Liked by 1 person

    1. I’m glad you enjoyed it! Thank you for reading 💚


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