2011

Well, the holidays are over and the new year has begun, and for the first time in my life, I'm not looking forward to a new year.  Don't get me wrong, I am so thankful for each day that I have with Kaleb but in the back of my mind I keep thinking, statistically, most kids with Sandhoff's Disease die between their second and third birthday.  I still haven't accepted that I'm going to lose my baby and I don't know how I'm going to make it through this.  I am so thankful that I have a strong and amazing husband and I also have a pretty amazing teenage boy to help me make it through my days, I don't know what I'd do without them.

I think I've said this before but each month since last years NTSAD conference, "we" have lost at least one child, and December was not an exception.  The Alford family had to bury their little girl a week before Christmas.  Each time we have to say goodbye to one of these precious children, even though I haven't met some of them, it takes a little piece of my heart, I feel as close to these famlies as if they are my own. 

This year I have made it my goal to take at least one picture a day of Kaleb, even though they appear to be the same pictures as he's either asleep or staring off at Heaven, I want to "document" this year in some small way.

Quote of the day
"There is no growth without change, no change without fear or loss, and no loss without pain" -Rick Warren-