5 Things I Wish My Friends Knew as I Parent a Child With Complex Medical Needs

Parenting a child who is medically complex can be an isolating experience. I’ve noticed that many friends want to understand my life, but the rare times we see each other, I would rather talk about something other than the hard things. You may also have a friend in your life who has a medically complex child. I polled some of my friends parenting medically complex kids and these were the top 5 things I kept hearing over and over again. I hope this gives a small glimpse into our lives and the things we may not talk about.

1. I’m afraid that my child will die too soon. But I am more afraid for my child’s well-being after I’m gone.

This is a complex feeling that so many of us worry about. I am my child’s advocate; I know them better than anyone else. It’s hard to trust other people to care for my child, because I feel no one will love them as I do. I am afraid their fragile health will end their life before I am ready to say goodbye. But who will care for them, protect them, advocate for them when I am gone? Yes, it’s all complicated and if I think about it too much, I will feel incredibly anxious.

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