Children’s Hospice Week – ‘Normal’ family life

//Children’s Hospice Week – ‘Normal’ family life

Children’s Hospice Week – ‘Normal’ family life

Everyone’s normal is different.

For me, normal was growing up in Northern Ireland amidst ‘the troubles’. Loitering around the army vans in the hope of being given a left-over chocolate bar from their packed lunch. Having helicopters land in the park opposite and 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 very different 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 because 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 window sill, 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.

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 but all of those 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 jewellery box of moments in time.

I’d still prefer it to be easy because my default is to avoid effort and tears, but 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, so I’m trying to let it bring out the best in me wherever possible.

This week, Children’s Hospice Week is promoting ‘Putting Families First’.

Nearly 50,000 children and their family’s, 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, can I suggest you take more selfies and make more memories – life can change in a day*.

* I strongly believe making every day count includes taking respite, spending time with your spouse and your other children. That is why the work of Children’s Hospices is so important and why the cuts in disability funding so critical. Your quirky three-year-old will soon grow up. Take a break and don’t miss it. Definitely don’t miss out on living because you are too proud to ask for help, we all need help.

By | 2017-06-15T11:54:03+00:00 May 24th, 2016|Categories: Uncategorized|0 Comments

About the Author:

Qualified Nurse, Writer, Trainer, Public Speaker and unqualified parent of three. My days consist of Lego, laundry and loving three boys, one of whom has complex and life-limiting disabilities.

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