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Last week I spent the afternoon with Katie and Jaylen and left feeling like I'd been punched in the guts. The full enormity of what Katie is going through started to become apparent to me as I watched Jaylen change from happy and giggling to needing emergency care in under an hour.
He is ok now but everyday the roller coaster that he is on continues to twist and turn taking Katie along for the ride. I watched as Katie switched from the girl I have come to know as bright and chatty to a woman whose worry seem to age her beyond her 20 years.
I watched doctors enter the room and saw genuine worry on their faces as they tried to see what they could do to stem Jaylen's suffering. It was heartbreaking and still not even close to the worst day he has had in his 16 months.
I spent a lot of time in hospital's over the years with my Dad, from emergency to ICU to general wards. Hospitals do not scare me. Likewise I have witnessed with the horrible reality of having a disabled child through my freindship with Tyler and his family. I have photographed Tyler in hospital, letting him shoot me with his toy pistol as his mother was delivered bad news. The experience was certainly not pleasant but I met Tyler after the risk of cancer had lessened so all I have ever known of him is the remarkable little kid who makes me laugh. But to see a baby in the throws of such horrible pain, to see doctors getting emotional, and to watch his young mother so small and helpless in the corner of a hospital room was petrifying.
And I was just in for a few hours on a Tuesday, just visiting Katies life for the day. I could leave and go back to my easy little life- she can't. And so she leaves the hospital at midnight with Jaylen stable and hopes that the next morning when she comes in it will be a better day. That is Katie's reality though and exactly why I want to tell people about her story so they will be able to lend support to mothers like her and that maybe she and her family will know just how special they really are.