Tuesday, 19 May 2020

Day Twenty Four

I just fell through a portal into the past. 

The sight of our newborn baby girl in an incubator in the hospital's Special Care Baby Unit, captured in this photo from 21 years ago, was skin-tinglingly visceral.

I can feel the oppressive heat of the room, hear the competing beeps from the various machines, remember how overwhelmed, how tired, how shell-shocked I was, and how tiny and helpless she looked.

Those early days were hard. The diagnosis of Prader-Willi Syndrome was still a few weeks away. No-one could explain why our girl was so weak and floppy, and was unable to feed without a tube. 

Those little porthole doors gave us access, to hold her tiny fingers, and sit and stare and worry and hope.

The worry and hope has never gone away. We anticipated then that life was going to be different, and it is, and always will be. 

She’s in the next room, talking to me as I write this. She loves to suddenly start speaking to me with no warning from a completely different area of the house. In the spirit of this post, I should tell you that my heart was filled with joy at being able to hold a conversation with the woman this little baby in the picture has grown up to be. I should tell you that, but my actual reply was: “Will you give it a rest? I am NOT having a conversation with you when you’re in a different ROOM!” Don’t judge me, it’s bloody annoying.

Yeah, life is different, just as we expected. But it’s unexpectedly better. Better than we ever thought it could be back then, through that portal, holding her hand, just managing to hold on.


Song is Nick Drake - Time Has Told Me

As part of the 2.6 Challenge (which is asking people to fundraise and donate towards small charities that are threatened with closure because of the effects of the Covid-19 crisis) I'm currently writing 26 blogs in 26 days.The PWSA UK is a charity which is absolutely vital for people with PWS, their families, carers and professionals who work with them. Without urgent help, PWSA UK will fold. This charity saves lives and for some people makes lives worth living. In those difficult early days, they were there for us. If you can, please go to my Just Giving page and donate anything you can spare - a few pence or a few pounds, it all counts. Two more days, two more days, we can do it. 

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