Not today…

As you walk along the beach holding her hand, watching her collect shells, hearing her scream with joy as she splashes in the sea. You wonder if she’ll ever get the opportunity to get married, to have her own family, to hold her own daughter’s hand as she jumps over the waves.

She’s oblivious to your thoughts, giggling as you bury her feet in the sand, joy emanating from every bone in her body. Her innocent smile brings a tear to your eye. Why can’t it always be this way.

Will she grow old?

Will she be happy?

Will she be alone?

Questions constantly float around in your mind, you fear what most fathers don’t even consider. But that’s the reality of chronic illness, nothing is certain. Your job is to protect her, but you’re terrified of what will happen when you’re gone. Who can you really trust to keep her safe.

Every joy feels like it’s encased in sorrow. No matter how hard you try to focus on the happiness, the future seems to constantly weigh down the present. The best made plans are frequently torn up. Holidays are cancelled, Christmas’ are spent by hospital beds, birthdays are postponed.

Every night you give her an extra kiss goodnight, you don’t know how long you will ‘have’ her, so you try to cherish the moments you do. The fear that you are only ‘borrowing’ her constantly looms over you. Those innocuous ‘little sniffles all children get’, could trigger a series of events snatching her away at anytime.

Chronic illness isn’t a disease you either beat or succumb to quickly, maybe that certainty would be easier to handle. Instead you gravitate between stable and critical illness. There is no ‘everything is ok’, there never will be. There’s just an ‘ok’ right now.

You know P’s fight will never really stop, it will never really be over, until at some stage her body runs out of energy….

But that day isn’t today. Today she is just like any other child splashing in the sea, immersed in the beauty of play, living in the now.

If only you could.

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