On Friday December 2nd Stephen and I headed to the Montreal Children’s Hospital, we were about to officially find out the name of Lauren’s disease. My adrenaline was pumping, for weeks I had been reading up on different forms of Leukodystrophy. I had my suspicions, but still hoped that there was some mistake made – a misunderstanding that would allow for a cure.
As we sat down with the Neurologist it was clear that no mistakes had been made, Lauren had been diagnosed with Krabbe Disease. Stephen and I had fully expected to hear this but it still brought a flood of tears to my eyes, this was really happening.
The rest of the visit went by in a haze, we discussed what we would need to think about and consider over the next few months. Some items on the list were easy to bear, like changing Lauren’s NG Tube to a G-tube (feeding directly into the stomach), while other items were far more complicated. It became clear tough decisions would need to be made as the disease progresses and Lauren’s quality of life deteriorates.
Our journey with Lauren and her disease has only begun, and the road ahead terrifies us. We have no control or ability to fight this, the disease will take it’s course and we will have to endure the struggle while savouring the precious moments.
We will cherish the time left with Lauren, appreciating every coo and smile. We will live in the moment, taking it all in one day, one hour, one minute at a time.