[tri-wings] Re: Maya

Nancy,
This is a strange thing to admit, but it is not often these days that I find 
myself with tears in my eyes over the loss of another child. It makes me sick 
sometimes that the tears do not come, not for my own daughter even. I think it 
is a defense mechanism of my body, some strange way of protecting my overworked 
sympathetic nervous system, so i do not suffer from the effects of chronic 
stress. I hate it really, that I have become conditioned to accept the loss of 
a child without those tears that I used to not be able to hold back at all. 

And then I read your post to Maya about Sky's friend Sam. You touched my heart 
with that, and found that little spot that has not hardened over, and the tears 
flowed. You reminded me how much each of our children can impact, and do impact 
those around them and how much it means to us all to know that. I know this 
with everything I am, but the knowing does not always connect with the feeling. 

Thanks for sharing that and giving my system a little feeling back, and strange 
as it sounds, making my night. 

Bess


-----Original Message-----
From: S3219@xxxxxxx
To: tri-wings@xxxxxxxxxxxxx
Sent: Mon, 11 Aug 2008 7:08 pm
Subject: [tri-wings] Re: Maya



Maya,
 
You've been on my mind throughout the day today. I had to run Ian down to  
see his immunologist and questioned him about whether or not cells can change  
their make-up. (Ian has yet to be diagnosed but all signs point to A-T. Testing 
 so far hasn't been conclusive.) He said that in cases of mosiasim what 
generally  happens is that a sample of cells is tested. Just because mosiaasim 
isn't  detected doesn't mean that there aren't some random mosaic cells that 
were  
missed in the test sample. This is similar to what we may be facing with Ian. 
 Just because his blood work hasn't shown definite signs of A-T, that doesn't 
 mean he doesn't have it and we have to look at what the signs and symptoms 
are  showing us.
Anyway, on our way back home we stopped to shop and I thought of how  
difficult it was to go into stores at first. I would see things that would look 
 
cute 
on the girls or see friend of theirs or people who worked with them,  
etc....You came to mind as I'm now having to buy more clothes for India and  
finding 
her in the same size that Analee wore last.  I kept some of  Analee's clothes 
and can use some of them but most I gave away because I knew I  couldn't put 
them on another child. Some of her things, I set aside and figured  I'd decide 
later, when India got into size 4's and 5's. That's where we are now.  I have 
clothes that we bought for Analee that still have tags on and some things  
that were only worn a couple of times. I now have to decide if I can handle  
seeing them on India or if I should pass them on to friends or to pass them on  
permanently so I don't run the risk of seeing anyone else in the clothes 
either. 

 One friend is using Analee's blankets with her newly adopted daughter and at 
 times it is a struggle to see them tucked in her diaper bag.
It makes me wonder if she thinks of Analee when she uses it, or if she even  
remembers that it was once Analee's. 
Other than one of Sky's best friends, people don't usually mention the  girls 
at all. I wonder what peo
ple think when they come to my house and see  
pictures of all our kids on the walls, or when I sign cards with all the kids'  
names.  I think that there's a tendency for people to try not to mention  the 
kids 
that we've lost. I don't know if people don't know what to say or if  they 
figure that it's easier for us if they don't mention them; So that  they avoid 
bringing up sad feelings for us. I wish that people would figure  out that just 
because we can't see  and touch our kids, they are still very  much a part of 
our lives. 
I saw one of the kids who went to school with Sky at a ball game. (Sam has  
Autism) He came up to me and said "Sky died."  I was so happy that he  
remembered her and thought enough to say something. His mother tried to hush 
him  
and 
change the topic. I chose to ignore her and told Sam that, "yes, she  did die, 
and thank you for remembering her." He asked, "Cause why did Sky  die?"   I 
simply said that "Sky got very sick and the DR. s couldn't  fix it." Our 
conversation was short but it meant so much that he thought enough  to 
acknowledge 
her loss and to ask about what he felt was important.  
Over and over again, kids remind me that they might be disabled but they  are 
so much smarter than the average person.  I hope that you, and all the  
others who feel that our kids get forgotten too soon, have a "Sam" in your 
lives  

that will continue to have the courage and sense enough to know that we never  
forget and that we need to know that others haven't either.  
 
 
 
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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                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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