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To Parents With Children Born Healthy Who Feel Sorry for Me

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When you are pregnant and people ask which sex you would like, you happily answer that it doesn’t matter. “As long as it’s healthy,” you say. Because then and there, that’s what you are supposed to say. It doesn’t matter if you wish for a girl or boy, the wish for health comes first.

Then fast forward a few years… and the child, the child that was born with five fingers on each hand, five toes on each foot and an adorable heart-shaped birth mark on her bum…. this absolutely perfect human being that you made? She is not healthy. Not even a little. And you know what? It doesn’t matter even one tiny little bit. You don’t love her any less, you don’t secretly wish to return her for a refund and you wouldn’t change anything about her for the world.

You learn to live with the cards you have been dealt, you make the best of the situation you are in, learn everything you can about the diseases and issues you face, and life goes on. It goes on, and you live and you fight, and sometimes it’s hard, so very, very hard, but it’s OK, because it’s your life, and everything you do is for your child, and it really doesn’t matter one little bit because to you she is perfect in every little way. 

Don’t feel sorry for us, don’t say, “Oh poor you,” don’t say it. Don’t say you are lucky there is nothing wrong with your child. This health thing, it’s a tricky thing because it can come and go, instantly. Think instead, think for a moment, if you see me struggle, how can you maybe help? There is so much you can do, really there is!

Spend time with us. Understand when we cancel for the 15th time. Forgive me for forgetting really simple things. Come for coffee. Ask if you can bring something — I will always say no, but it’s nice when you ask. Call or text, even if I forgot to reply the last time. Send me a link to a funny or cute story, or better yet, make me laugh.

Just be there, be our friend and be our equal, not someone who pities us. My child, my princess, is perfect in every way, just like your child. Things sometimes aren’t as simple for us — just accept this. Accept us, this way, the way we are.

Things are a bit tricky for us lately. Don’t walk away. We need you now more than ever.

girl wearing hospital mask holding pink and purple stuffed animal
Linda’s daughter.

Follow this journey on GlutenFree & Me.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 18, 2016
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