[tri-wings] Re: Nancy (andMaya too)

Thanks for saying that Demi!
I have spent almost five years regretting that I did not SCREAM louder for 
heart surgery for Emma. I remember even one mother told me, whose child had 
heart surgery, that it was that some kids are just more special than others so 
mine must not have been special enough. To hear that from a fellow mom, whose 
child was still alive thanks to the surgery, and mine was not was very hard for 
me to get over. My point is, it is not just one group of caregivers but a 
general belief that many are fighting. It is very, very hard to do that and in 
most cases impossible to do. Just try to be gentle on yourself when you start 
feeling that way, and remind yourself that every thing you did and chose, you 
did out of love for your child, period, exclamation point. 

The reality is, just as Demi said, regardless of whether our child has normal 
chromosomes or an extra one, we cannot control everything. Letting go of the 
what ifs, if onlys and woulda shouldas is the hardest part of this journey. 
Though, as Gloria said, the pain gets less severe over time, it does not go 
away. I think it is simply we develop a tolerance for the intolerable and learn 
to accept what our head knows but our heart cannot yet accept. Eventually, what 
you know in your head will match what you feel in your heart and you will move 
through the really hard part. 

The only thing you can do now, is focus on the love as that does not, will not, 
and cannot go away. 

Bess0AMom to Emma Grace 12-2-03 to 12-15 -03 Full T18 and Ben, Jake, Zack, 
Chloe & Will
Naples, FL


-----Original Message-----
From: Demi Powell <demipowell@xxxxxxxxxxx>
To: tri-wings@xxxxxxxxxxxxx
Sent: Wed, 30 Jul 2008 3:41 pm
Subject: [tri-wings] Nancy (andMaya too)



Nancy

e shouldn't have to shout!  We are parents, we are responsible for love, care, 
pbringing, development, stability, consistency.  Medical care is just not in 
ur remit.  

he truth is that medics ultimately have the power in this one and it is they 
ho bear the responsibility for not listening to parents who know their children 
etter than they know themselves.  The system bears the responsibility for the 
olicies that discriminate against our kids and the holding back of valuable 
ests or care because of money.  

t probably would be that no matter how loud you shouted they would not have run 
hose tests or speeded up the treatment, you would just have had a sore throat 
nto the bargain.  Its hard for us to accept we can't control every aspect of 
ur kids lives, every experience of bullying at school, poor treatment from 
ervices, long waiting lists for vital equipment, people staring in the street.  
ut we can't.  What we can do, and DO do, very very well is be parents.  We take 
esponsibility for the things we can do and do them in abundance and with love.  
 
ove and hugsDemi  I buried two children > because I didn't yell loud enough, or 
atch the signs of their urinary tract20> infections soon enough.
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                       www.trisomyonline.org
                  Families Helping Families On-line

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