Oh. Wow.

As of Saturday – for the first time in Albie’s life, he is entirely free of medications. Multiple plastic syringes have littered our daily life. Now he is done and dusted with the whole lot of them. No more, no more, no more. No more Calogen, no more Amiloride, no more Frusemide, no more Aspirin, no more Lactulose, and of course, no more nasal gastric Pepti Junior.  Oh the Pride! I feel like Julie Andrews atop a hill. He is pink, and happy and growing and he is doing it ALL BY HIMSELF.


That’s for now of course. It’s  a strange thing to know that we will go back there, that his heart will again need help, and then after they have helped it as much as they can, they will need to open our boy’s chest once again too. My soul can’t even begin to stretch back there to that again, back to all of that, not yet – not by a long shot. I already know that it will only get harder. I worry, every now and again, that one day there will be a limit to what we can bear. Such thoughts are fruitless, but they creep in when I least expect it.

You must get bored of my worry! I am sorry. I wish it were easier for me to contain I really do.


So for NOW, I am trying hard to not wait in anticipation of that other foot to fall. To just let that foot be on the edge of our world rather than right in amongst it, muddying our current happiness. Because if I am honest, where we are at the moment is truly the best place our family has ever been.

I hope that this stride that we are in is a very, very long one.

Photos lying on my back in the backyard. Hello summer.