[tri-wings] Re: Maya

Hi Maya,
 
Although we've never met, having you in our livingroom for so long, and  
being able to follow Mieko's story makes her loss, connect deeply for our 
family  
and I'm sure for many others.  The news of her passing traveled quickly  
throughout the community here in St.Cloud and your family was the focus of  
conversation and sadness throughout the peds rehab department where we take our 
 kids 
for therapy.
I was so struck by your post when you talked about feeling responsible for  
not having been aggressive enough with Mieko's treatment. I too felt tremendous 
 guilt over not having responded fast enough when Analee got sick.  
Ultimately a stupid UTI started the rollercoaster of events that lead to her  
entire 
system shutting down. The following month, a UTI prevented Sky from  getting 
the 
proper treatment, as the DR insisted that this was her only problem  in spite 
of my arguing that her shunt was malfunctioning. I buried two children  
because I didn't yell loud enough, or catch the signs of their urinary tract  
infections soon enough.
It's taken a lot of counseling and a great deal of soul searching for me to  
be able to accept that I always did the best I could for my kids. It's easy to 
 go back now and think about all the things I wish I had done differently.   
Had I known at the time, what I know now......
The reality for all of us who end up on this list is that the devastating  
loss of our children is not something that we chose, or had control over. Even  
parents who opt to forgo certain treatments, do so with only their children's  
best interest in mind.
Regardless of the doubts and questions you have about her care, Mieko lived  
her life and left this world knowing that she was deeply loved and that you  
would do anything for the chance to hold her, and love her just a little  
longer.  She was an incredibly beautiful, bubbly little girl and kids who  
don't 
feel loved, can't fake a smile that looked like hers.
I wish for both you and Shawn some sense of peace as you continue on in the  
days to follow. I also want to thank you both for sharing Mieko's story with 
so  many strangers and giving a face to, a seldom heard of disorder.
 
 
Nancy,
Mom  to Tony (9), Ian (5), India (3 1/2), Logan (3),
and Angels
Sky  (11/21/92--8/26/06), and Analee T-18  (7/22/96--7/4/06).


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