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.


    • Yay for Albie doing it by himself! (maybe with a wee bit of help from his mum and dad) I’m so looking forward to seeing you in a couple of days. xx

  1. that is great news Sarah and as you say part of a genuinely epic journey, enjoy this part and i hope you have a superb summer break together w/o pills, potions, hospitals and doctors and with friends, sunshine, music, aroha and goodtimes!

  2. Ah Wellington has been so sunny lately huh (apart from today that is). So nice to hear your little boy is doing well. My daughter is a similar age and my heart aches for the tough times and suffering your family has had and will have to go through in future. I’m glad to hear you’re getting all Julie Andrews now though. 🙂

  3. Such a great thing to hear! Your words above express my sentiment and how I felt at this point and time with my CCTGA etc son..and yes those niggly negative thoughts do swing around my head, if I am honest, each and every day and then I look at what my son and your precious wee Albie and all the other complex heart children out there have achieved, and I smile to myself, greatful, so very much, for the simple pleasures that each new day brings, always mindful of the strength that these children have. They are truly sensational. Mr11 now is doing incredibly well, and JW,23b Cardio, is so impressed, as I am sure he will be with Albie’s progress.

  4. Go Albie! Awesome news Sarah. Bask in the beauty that is right now. You deserve it! Have a wonderful summer and may the good times continue for you all xxx

  5. Your post reminds of a nice lyric I heard today. It went something like…sometimes I get lonely, but sometimes is not always or forever…sometimes I get frustrated, but sometimes is not always or forever…Sometimes I am fearful, but sometimes is not always or forever,,,
    I like it – something I will try to remind myself when I need it.

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