Sunday, February 26, 2012

Sometimes I Hate

I know many people do not like to use the word hate.  In the past I have even been known to tell my children, "we don't hate".  But today there is something I hate.  It is this horrible disease we call Leukodystrophy!  Although there is so much good in our children, there is NOTHING good about Leukodystrophy!

Leukodystrophy has taken the lives of two more children!  A sweet baby girl just 6 months old, and a beautiful 6 year old boy.  The 6 year old had AGS and passed away after a three week battle in the hospital due to a respiratory infection.  My heart goes out to their families.

Once again, these children are children that I only got to know through the internet and yet my heart hurts for their families and for the short lives they had here on this earth.  I dread the day that one of my close friends loses a child to this horrid disease, or the day that one of my own children no longer has the strength to overcome something like a common cold and I have to tell them good-bye.  How do you ever prepare for that!  Oh how I hate, loathe, despise this disease!

3 comments:

Ann said...

I completely understand the connection you have to other children and families you only know via the Internet. The bond shared with families who live "the life" is like no other.

I'm sorry for these families. {{{Hugs}}} being sent your way.

Ann

Julie said...

So sorry for your struggles with this "hateful" disease! Sorry too for the families who lost their little ones to it.

Gr8Life said...

I HATE with you!
Such a horrid disease that causes so much suffering. I Hate to see children suffer. And it is so terrible & bitter/sweet when they say goodbye to all the suffering.
I wish everyday that I could have this illness instead of my children.