You stare emotionless at the blur of movement in front of you, the air is soaked in high pitched noise. As a group of children sprint by, you see them excitedly scrambling over obstacles, squealing loudly with joy. ‘P’ lies there on your lap, head on its side watching, she’s sweating profusely, she’s completely weak, her heart is pounding so hard you can feel it reverberating on your leg. It’s desperately trying to pump enough oxygen around her body so she can join in. Younger children skip past oblivious, she tries to get up, join in, but she can’t. She looks you in the eye and her smile dissolves. As she lies there helpless, completely vulnerable, you try and hide the tears behind your eyes.
Since she was born every soft play party has been the same. The trivial chit chat disguised your heart breaking. You always followed her into the maze, helping her up when she couldn’t get a grip, carried her when she couldn’t go on, caught her when she fell. You couldn’t fix her, but you could at least try and protect her. Somehow these little things gave you purpose. As you crawled through the tunnels you feared she would always be left behind, be excluded from the games because she wasn’t fast enough, strong enough, fit enough. You pictured other children running away, away from her….
Alongside illness, seeing her isolated, playing alone was your greatest fear. Children can be kind, but they aren’t always patient. After everything she’s been through and overcome, seeing her joy extinguished would rip you apart.
For three years you fought, your patience and resolve were continuously tested, you were told you were wrong, made to believe you were being irrational, even stupid. ‘The symptoms aren’t related’, ‘the gradients wouldn’t present these symptoms’, ‘it can’t happen’. You began to doubt yourself, maybe they were right after all….
And then they saw what for three years they had missed. In a blink of an eye the medical opinion flipped. There was no apology, doctors don’t make mistakes, but she needed surgery now.
Months later you hold her hand tightly as she drags you purposefully towards the entrance. You feel her grip loosening, her fingers start to slip away, you know it’s time to let go. She breaks free, and runs ahead, diving into a tunnel. Just before she vanishes she pops her head out and smiles. A wave of emotion engulfs you, you wipe away the tears that have been building up for so long…
Maybe now she’ll be able to keep up….