To My Daughter, as You Come to Terms With Your Pain From hEDS

One of my worst nightmares has come true, you have inherited my faulty genes. You have, over the past few months, found that it’s become “normal” to cry in pain every day.

I want you to know it breaks my heart every time you are in pain. I want you to know if I could take that pain from you on top of mine, I would without a second thought. I want you to know I will fight your corner, every step of the way. With everything I have, I will try to shield you from the pain of medical professionals, friends and even family disbelieving your pain.

I know you are scared, I am, too. I wish I could hold these emotions for you, but I can’t. I can’t promise it won’t be tough at times, you know that yourself. But I can promise you’ll never be alone in this.


I want you to continue striving for your dreams, keep aiming high. Yes, there will be times that pain may stop you, and of course, you need to learn your limits. But if there’s one thing I’ve taught you, I hope it’s to never give up. Remember how much courage it takes to try again tomorrow.

Most of all, I want you to know, that hypermobile Ehlers-Danlos syndrome (hEDS) may be part of you, but it isn’t you. You are so much more. Your being brings so much light into the world, not just for us, your family, but the whole world around you. You are everything I wanted you to be: kind, caring, empathic, hard working, funny, honest, compassionate and generally beautiful inside and out. I want you to know, too, I’m not alone in seeing these qualities, everyone around you sees them, too. You make me proud every single day, especially when you show such perseverance.

The guilt I carry for passing my genes onto you feels too much to bear at times. But I cannot regret bringing you into this world — you truly are the meaning of your name, a shining star. I love you with everything I am, and will continue to do so. I only hope one day you will be as proud of me, your mum, as I am of you, my daughter.

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