An Open Letter to Hemophilia Parents

An Open Letter to Hemophilia Parents

Dear Hemophilia Parent,

Today, I write to you. I am a child with hemophilia. I am taking the liberty of speaking on behalf of your child, who may be 2 days, 2 years, or 20 years old.

First and foremost, you are awesome, and I mean AWESOME. You are the perfect parent for me. No matter your spiritual practice or beliefs, know that I am meant to be tied to you. I am a beautiful individual, perfect even in my imperfection — just as you are. I love you dearly. You are tenacious and strong. You are a fighter. You are the best parent for a child with hemophilia, and the best parent for me.

We share a link — a timeless link, a DNA link. We are deeply bonded. When I look into your eyes, I see love, adoration, nurturing, and fear. I see your feelings of guilt. Please don’t regret having me — and “me” means all of me, including hemophilia. Please don’t blame yourself for creating me with my hemophilia. Love yourself as much as I love you, as much as you love me.

The X chromosome you gave me is what made me the person I am: the child you love, the child you adore. While you passed a mutation to me that resulted in my having hemophilia, you also gave me life and love. You made me who I am. Without that X chromosome, I would not be me. And I know you want me to be the me that I am.

Take care of yourself. Make sure you get the treatment you need and deserve so that you can be here for me. As a hemophilia child, I want to tell you how much we look up to our hemophilia parents. There is no blame, only love. Perhaps our love is stronger because of this reality. It is not a bad thing. 

You are my rock, and I will always be your baby. Take my hand and let’s walk proudly together on this hemophilia journey.

All my love, 

Your child with hemophilia, who loves you more than you could ever imagine, mutated X chromosome and all.

There is no blame

I am a hemophiliac and so is your son or daughter (maybe you are, too). We do not blame you, as you probably do not blame your father or mother if they passed it along to you. I consider it more of a knowing, an understanding of science, as opposed to “blame.” It just is.

Hemophilia will shape us, grieve us, and define our character — if only by force. But it will also bring tremendous growth opportunities and an abundance of community, joy, and love.

My dad’s hemophilia was part of what made him the person I loved. And my hemophilia and all the accompanying struggles make me who I am. Maybe I would be a shallow, heartless, entitled person without it. Who knows? And with it? I have the gift of my blood sisters and blood brothers — my hemophilia family. I also have the opportunity to try to make the hemophilia journey a bit more welcoming for those who pilgrimage after me.

***

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.

Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with five traceable generations of hemophilia A in her family.
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Shellye Horowitz is a licensed school counselor and school administrator with over 25 years of experience in the field of education. Shellye has strong ties to the bleeding disorders community with five traceable generations of hemophilia A in her family.

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