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Why I'm Raising Awareness About Children's Hospice Week

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Rachel and her family in the woods
Rachel and her family.

Everyone’s “normal” is different.

For me, “normal” was growing up in Northern Ireland amidst “the troubles.” This was when we were loitering around the army vans, in the hope of being given a leftover chocolate bar from their packed lunch, or having helicopters land in the park opposite us. It was understanding the difference between religion and faith. As the middle child of five, I grew up in a fun, chaotic and loud home. My parents had a strong faith and lived their lives through their values.

My own children have a different kind of “normal.”

Our home has less running around and more hospital appointments. My eldest doesn’t experience climbing under my duvet in the middle of the night when he’s scared. Yet, my middle son has woken to find his grandparents in place of his mum and dad (because they have made a midnight trip to A&E).

Although we don’t talk about it much, we are all aware that life has to end. It isn’t as though we talk about death all the time. It doesn’t linger thick and heavy in our lives, but rather it is a gentle presence, adding perspective and authenticity. Like a well-known and unassuming trinket on the windowsill, death’s company doesn’t make the room drab and sad. Rather, it is a discreet reminder that life changes in an instant, so we cherish it and enjoy today as much as we can.

Rachel and her family.
Rachel’s family.

You have a choice as to how you read this post.

You could read it with a sullen, low voice, accompanied by slow, deep melancholic music, but please don’t. Instead, read it as an empowering, uplifting and invigorating way to live.

Yes, it’s hard, but so is running a marathon, climbing a mountain, passing an exam, parenting or being married. Yet all of these things are made sweeter and more enjoyable because they aren’t easy. When you don’t take life for granted your senses are heightened. You’re constantly storing away memories, collecting a precious jewelry box of moments in time.

I’d still prefer it to be easy, because my default is to avoid effort and tears, but to me, that isn’t life. That isn’t living.

I have been to more children’s funerals than I would like and I expect to go to more. There is no way to dress that up as anything but heartbreaking and wrong, but that is my normal and the reality of my friends. It shapes me, makes me who I am and so I’m trying to let it bring out the best in me wherever possible.

This week, Children’s Hospice Week in the UK is promoting “putting families first.”

Nearly 50,000 children and their families live with a life-shortening condition. There are many hidden stories as people quietly live out their tough and precious “normal.” If you want to know a little of what life is like for us, you can read The Skies I’m Under.

We all live our own “normal,” but as you do, my suggestion is to take more selfies and make more memories? Life can change in a day.

Follow this journey on Born at the Right Time

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 27, 2016
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