I woke up this morning thinking about William and Kayla, two brave little warriors who are having a rough go of it right now, it kind of snaps you back into reality. I've said this before, Kaleb has been doing so good, for Kaleb, (knock on wood) for some time now that this seems like our normal and I can almost forget what our reality is. I have over 100 Facebook friends, most of them, I have never even met - but we share one thing in common, we are all losing, or have already lost a child to Sandhoff's, Tay-Sachs, GM1 or similar disease. For something that is so rare, that sure seems like a lot of people. These diseases cause us to have to make the hardest decisions about what to do for our kids, from trying experimental treatments in hopes that it will keep our babies here long enough for a cure to be found, to deciding on what medical interventions, if any, to make in order to keep them comfortable while they are here. Once those decisions are made you have to be at peace with them, you can never second guess them and whatever happens, happens. Sixteen years ago, when I had Christopher, I worried about his friends, and whether or not he would get a good education, did I teach him well enough to make the right choices when faced with difficult things, like his first broken heart (which broke my heart too!). I still worry about all those things but add to it, driving and now that he is a teenager, will he make the right choices when it comes to relationships, alcohol, peer pressure in general... does he understand how important his education is, will he get into the college that he wants and find a career that he will enjoy....such a big difference in what I worry about between my two children.
Over the last three years we watched a lively, energetic, happy baby, slowly slip away. His laughter is gone, his smiles, gone, eye contact, gone - just a perfect, untarnished, angelic shell wrapped around a pure and beautiful soul. I thought my worries for Kaleb would be the same as Christopher's but all of that has been replaced with only two things making sure he is comfortable and making sure he feels loved. That sounds so simple, but when you have no means of communication, everything is just a guess and a hope.
“If there ever comes a day when we can't be together keep me in your heart, I'll stay there forever"
~Winnie the Pooh