Living with ‘life-limited’

**Trigger warning: child loss**

I think a lot about death. His death. They say he is ‘life-limited’ but they can’t tell us when the axe will fall.

Each time I kiss him goodnight, I wonder if it will be the last. Each time he stirs, I rush to see if he’s having a fit. When he’s quiet, I crane my ears to check he’s still breathing. If he’s breathing softly and regularly, I steal another kiss, to make sure he knows that I love him.

I think about what I would do if I were to get there in time. Run through CPR in my head; re-read the instructions on his rescue medication; check that the telephone is close to his room; worry about how long the ambulance will take to come.

I think about what will happen when the time comes. Will we have any warning? Will we be able to choose to take him home? Will it be peaceful? Or will it be a seizure? Will he be fighting for breath? If I know he’s gone would I wait, before I called anyone, just so I could keep him close a little while longer? I dream about post mortems, funerals, cremations, epitaphs. About sending back all his equipment. About all the forms there’ll be to fill in.

I think, guiltily, of how much easier our life would be without him. The places we could go, the things we could do, the fun we could have. I think, guiltily, of how much more difficult our life would be without him. No motability car, no carer’s allowance, no DLA. Of the doors he opens for us, the new friends he makes us, the insights he gives us.

I think of the hole he would leave.

I try to imagine his bedroom, empty; his toys, tidied away; his smile, stilled; his eyes, dulled. I think of the hole he would leave.

And I worry for my girls, each so different and so precious. So aware of life’s fragility, I spend too long Googling stories in the Mail about children who die from chickenpox or a sudden allergy to peanuts. My perfect three – how our family was meant to be. How could it possibly function without any one part?

I have too many friends who have lost, or are losing, a child. The special needs community suffers more than its fair share of tragedy. Each time, it feels simultaneously like a punch in the guts and another bullet dodged.

My fears paralyse me. How can I plan for a future that may not happen? How can I think about housing adaptations, about special needs schools? It’s hard even to do the therapies that will keep him strong and straight for future life. I just want to hold him close and show him how very, very much he is loved.

The thing about thinking about death is, it makes you appreciate life. Life in all its fleeting beauty. Life in all its rich variety. Life that is of value whether you are a world leader or a non-mobile, non-verbal, incontinent, visually-impaired, tube-fed, epileptic, heavily-medicated two-year-old.

And so I each day I massage his perfect, pink little toes. Each day I stroke his soft curls. Each day I just hold him, just lie with him, look into his eyes. Because every day is a bonus and each day is a gift.

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2 thoughts on “Living with ‘life-limited’

  1. Such a touching post and opens our eyes to how precious, and at the same time precarious, life is. Wishing as always that no-one would have to go through this pain, and sending these useless virtual hugs x

    Like

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