[tri-wings] Re: another anniversary

Hi All,
 
I was feeling a need to whine a bit so I thought I'd dump it here. Today is  
the 2nd anniversary of the day they stopped Sky's heart, and removed her 
organs  for transplant. This whole week has been filled up with the memories of 
that  week from before.
At 10:35 p.m. on the 25th she took her last breath. Twenty-four hours  later, 
on the 26th they officially pronounced her "dead."  She continued on  life 
support until today at 11:50 p.m. when they stopped her heart during the  
transplant surgery.
We've been lucky enough to have heard from both kidney recipients and the  
young woman who got her lungs. We also know that the person who got her liver  
ended up needing a second transplant, so that was disappointing. We'll never  
hear about her corneas or heart valves but hopefully someone has benefited from 
 those as well.  
The woman who has her lungs was 22yrs old and in the hospital preparing for  
death. She was down to 80lbs and needed a g-tube for nutrition. She had 
battled  cystic fibrosis her entire life and had been told that she should 
prepare 
for  the end of her life.  When she wrote this past spring, she was over 100lbs 
 and back in college. She was active and no longer needed the feeding tube.
She was  very grateful but I never had the sense that Sky is living  on 
through other people. I think having had the time to sit at the hospital  with 
Sky 
while they found people who needed organs, gave me the sense that Sky  was no 
longer in her body. Those organs belonged to those other people the  minute 
they left her body. I am happy that other people have benefited from  this. 
I think sometimes that Sky's death was overshadowed by the loss of  Analee.  
Sky's funeral was much smaller. Since much of our family lives out  of town, 
we encouraged them to skip the funeral since we had just seen everyone  at 
Analee's funeral.  My ability to cope with a house full of people again  was 
just 
not there and I think people stayed away because they too were left  wondering 
what to say or do the second time around.  I hadn't even finished  all the 
thank-you notes from Analee's funeral.  We actually got card for  Analee after 
we had cards come in for Sky.
Financially, we're still trying to pay off the credit card debt. We had  
always paid every bill, every month, with no outstanding balance.  We tried  to 
keep costs down by doing as much as we could on our own, but ultimately the  
cost was still outrageous. Morgan thinks we should file bankruptcy but I still  
hold on to the hope that eventually we can dig out. Having had to prepay for  
cemetery lots for all of us was what really added up. It was less costly to 
have  the stone engraved to include all the names ahead of time, but since our  
birthdays were put on the stone, the cemetery said that we couldn't place the  
stone out there until we had paid for the lots for all of us, up front.  It  
took us 11 months to get them paid, so we weren't able to bury the girls until  
last summer. I suppose we could have buried them right away and waited to 
place  the stone, but I couldn't put them out there until the grave had a 
permanent  marker. 
It was nice having their ashes here with us anyway. 
I think that it's hard too because school is starting again. We went to the  
open house for Tony and Ian on Tues. It's hard to see the girl's friends and 
yet  it's nice too because so many remember us and say "hi."  Some of Sky's  
friends seem to show up at the elementary school even though they've moved on 
to 
 Jr. High.
One of her best friends still emails me every couple of days.  She  remembers 
the dates that are significant and visits the cemetery. Sky and Katie  and a 
few other girls had lunch together everyday (even though Sky didn't eat  reg. 
food) then they'd go out for walks or find a sunny spot to sit and read  books 
inside. Those friendships seemed really important to all the girls.
Analee was small enough that the kids all wanted to read to her and play  
with her. She loved all the attention and it was fun for us to see how much the 
 
other kids liked being around her. I'll never forget her last day at school 
when  one little girl said that she wished she could hold her. Within minutes 
there  was a big group of kids sitting in a circle taking turns passing her 
around.  Analee just grinned and soaked up all the attention.  The other kids 
were 
 so proud of themselves for being able to spend a few minutes being trusted 
to  hold her carefully and then pass her on to someone else.  The teacher came  
running from across the field when she saw the kids holding her. I stopped 
her  before she got to the group and told her to let them be.  I too had 
stepped 
 away and let the kids all have time together without an adult hanging over 
them.  I don't think I was ever so aware of how the kids wanted to have a role 
in  caring for her rather than being kept at a distance and only being allowed 
to  touch her arms and hands. The teacher was so paranoid that someone would 
hurt  her.
 
I learned a lot that day and now make sure that everyone know that my kids  
are allowed to be on the floor when the kids are running around and playing.  
Other kids are allowed to push their wheelchairs and run around with the kids. 
I  remind people all the time that other kids fall and get hurt and my kids 
can get  hurt too. I'd rather have Tony get hurt because his wheelchair dumped 
than being  hurt because kids are bored around him. My kids all love to wrestle 
around and  have people push them fast in their chairs. 
Last year all the kids in his class took turns in his wheelchair and tried  
on his backbrace. Those kids all seem really comfortable around Tony now and  
don't have any problem helping to wipe his chin if he's drooling or wiping his  
nose if he needs it. Even though there are adult there to take care of it, 
the  kids all seem to like being the one to help him when he needs it.
I think I learned a lot when we first moved to the new school and kids were  
so accepting of Sky. I worried because Sky had a chronic sinus drainage from 
the  pressure in her skull, and she drooled and spit regardless of how much 
Robinul  we gave her.  Her friends all seemed oblivious to it and would argue 
over  who got to sit by Sky at lunch.  I suggested to her teacher that Sky 
didn't 
 need to be in the lunchroom and around the tables where the kids were trying 
to  eat.  She told me that the kids wanted her there. Apparently they didn't  
mind the wet face and not so nice behavior of spitting.  They'd just grab  
the hand towel off her chair and wipe her up when she got too wet.
Geez I'd give anything for another chance to wipe her snotty nose or have  
her intentionally blow raspberries in my face after I'd tell her to quit  
spitting. I guess we're all in the same spot there.
OK, I'd better get on with the day.
Thank for being my soundingboard again.
 
 
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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