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 time 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 that we may not talk about.
1. I’m afraid that my child will die too soon. But I am more afraid that my child will live even a day longer than I do.
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 no one will love them as I do. I am afraid that their fragile health will end their life before I am ready to say goodbye. But who would 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.
2. I will say no to most invites, but not because I don’t want to come. Please, keep inviting me.
I used to say yes to most every invitation. I could get ready in 15 minutes (well, maybe 30) and just tell the kids to get their coats and we would load up in the car. Now, it takes lots of planning, arranging for care, researching accessibility and weighing if we can really do it. Or if we are brave enough to say yes, would everyone understand if we cancel at the last minute when things just don’t work out? I know it’s hard to have a friend like this, but just getting an invite means the world to me. It tells me you haven’t given up just yet.
3. I may make this look easy, but it’s not
Maybe the reason many don’t understand my life, is because when we go out, we put on a brave, happy face and just do life. We appreciate the times we can do regular things so you won’t see how challenging the day has been. Our life is far from miserable but it is hard.
4. I want to know about your life too
So often, my child is a topic of conversation and it’s good to be able to talk about the good, the hard and the normal. But I also want to know about your life. I want to celebrate your children’s accomplishments, cry with you about the hard and lament about the daily grind. That’s the friendship I crave when we are in the hospital or stuck at home during flu season.
5. I wouldn’t trade this life for anything, my child is my world
I’ve said that this life is hard, but please know I wouldn’t change a thing. Well, I wouldn’t want my child to be sick and in pain, but what I mean is that you don’t have to feel sorry for me. I may get angry at the unfairness of it all, but my child is amazing, resilient, brave and strong. That gives me strength and hope each day.