Sunday, February 24, 2013

Life is Fragile

Again it has been a very rough weekend for our Leukodystrophy family.  Three more children earned their angel wings yesterday and many others are struggling hard right now.  Many, many prayers are going up to the families of all of these children.

I haven't posted much about Bryce and Annalise lately.   Many of you have asked me about them and are interested in how they are doing.  Thank you for caring about our family.  Thank you for your thoughts and prayers!  I will start by saying that overall they are doing great.  Bryce has even begun doing some things that he hasn't done since 2008!  Virtually unheard of with Leukodystrophy!  Annalise, although still quite weak, is again able to cruise around for short periods of time in her walker!  

I'm sorry that I have not posted more and I will do better with that.  It may sound strange, but it is hard to write about how well they are doing right now knowing that so many children with Leukodystrophy are struggling and/or losing their battles with this horrid disease.   It has been a very difficult year for the Leukodystrophy community.  I feel almost guilty that my children are doing well.  Even as I write this, I know it may sound stupid to feel guilty that my children are doing well, but being in this situation brings out some very strange feelings and thoughts.  Often ones that I am not even able to verbally explain.  I'm pretty sure that those who have been/are in the same situation as we are can understand what I am talking about.    

 Don't get me wrong, I am so, so very thankful that Bryce and Annalise are having one of their best years so far since their regression began.  I don't fully understand it, but I will take it as long as we have it!  It's just such a strange place to be in...finding such joy in how well Bryce and Annalise are doing, being so grateful for the blessings we are receiving at this time, feeling the pain of the other families, and fearing what tomorrow may bring.  Realizing that although my kids are doing well today, the possibility that one of them could catch a cold or something tomorrow and not be able to fight it off is still so very real.    It is completely in the hands of the Lord.  That does bring peace, yet I am still human and I still fear.  I'm working on that.  I am so thankful for every second of every day that I have with each one of my children.  Life is so fragile, not one moment should be taken for granted!

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