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The Date

If it has to do with Leo, you can be sure that it will have some added element of twisted fate. Be it great or small, and usually it is something so small and insignificant that you don't even think twice about it, until you look back and realize that it was actually the small push on a rudder that sent you spiraling into a completely new direction.

Like how all this started with him.

How in the very beginning I missed my 20wk ultrasound because of an accidental thing like a snowstorm and a school exam. How when we finally found out about Leo's state was because of a hunch from my midwife, how one tiny little decision after another found us all living fairly normally at home, how because of the arrival of seizures, he had an EEG, and how his neurologist noticed that his EEG looked really good (nobody expected that! Except his parents that is..) which then made him sit up and revisit his files and then call for a MRI 4 months earlier then scheduled. And from then how there was a last minute cancellation and we got that MRI done a month earlier then planned, in which we found out the best news of all, that Leo was in fact, not terminal, and that he has almost all the brain he needs to live and thrive. How the scan also showed the trapped pockets of fluid on top of his head and saved him 4 weeks of pain and extra pressure from his cranial helmet that he had just gotten the day before. And how we have finally arrived here, at the flat, calm section in which we collect ourselves before the stretch with the big jumps that we will throw ourselves and our hearts over in a few short weeks. The surgery that was very tentatively planned for this coming fall is now actually happening, for real, on June 1st. How even this date happened only by a strange twist of fate. The secretaries decided to try for this date only if a certain patient would be willing to reschedule, and while they were discussing this, the very same patient called herself before they could even lift the phone, to re-schedule! At this point, I would expect nothing less.

And so we find ourselves in that unique position of completely giving him over to faith once again, to leave our comfort zone in the hopes of a better place. We are freaked out, but we are also trusting in the path that we are on. This guy makes his own destiny, he carves out his own life out of impossibilities, he is our true miracle and that is the norm to which I hold on to. We will be having a Holy Unction service for him before the surgery, and I will post the date once we figure it out. All those of Leo's cheerleaders, readers, supporters, and friends are of course, as always, welcome!


  1. Christ is Risen! I am so happy for you! I have been following little Leo for a few months. I am so very happy for all of his progress. He is absolutely adorable. My daughter is a couple of months younger than him. I love seeing all of his pictures.

  2. He just continues to amaze! All of you will continue in my prayers.


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