SAD NEWS IN THE CHARGE COMMUNITY

Another child in our CHARGE community has passed away, and we are mourning the loss of this sweet little girl. My friend Sarah wrote about it today in her blog and her words echo my thoughts so clearly...

The relationship I have with my friends on the CHARGE list-serve is so bitter-sweet sometimes. Although I know very few of them in the traditional, in-person, "real" sort of way--the common bond of our children has forged a very unique kind of kinship.

I feel a swell of pride when I read about the 10 year-old who needs a walker to get around receiving the much anticipated violin from her parents. I sense the lonliness and isolation one mother has learned about her 17 year old son--from his 14 year old brother who now attends the same school--the other kids know him merely as "the boy who always has an adult (his ASL interpreter) with him." And I can almost taste the victory from another parent relating a sucessful surgical procedure or favorable outcome on a diagnostic test.

But the most real and most difficult news to hear about is the loss of a child. No matter how many times it happens, no matter how much or how little I knew of the parent or child on the list, reading that news still catches me--almost like taking my breath, and wadding it into a little ball that stays lodged in my throat.

Over the weekend, another child in the CHARGE community passed away. I don't know all the details, but the parents found their 2 1/2 year old daughter in her crib on Sunday morning. She had pulled her trach out, and by the time her mom and dad came to check on her, she wasn't breathing and had no pulse. I know her mom has expressed that she "should have been watching her every second"...but that just isn't humanly possible. Again, not knowing the details I don't know if the family had any nursing care or if they had a monitor. Please keep them in your thoughts and prayers, during this unimaginably difficult time.