Monday, November 26, 2012
Looking after a child with SMA Type 1 is intense. I would describe my experience delivering multi disciplinary intensive care 24/7 something like this. Imagine you are part of an expedition climbing Everest. As you are climbing you are relying on all of your gear and experience to keep you alive (in this case our child alive). One day a huge storm rolls in and half of your expedition is killed during the storm. It's to close to the top of the mountain so you decide to pray for the dead and push on to the summit. It's all about "looking past yourself" and delivering the care your child needs or they will die, simple as that. This is life with SMA.