My only younger sister would have been 42 now but passed away on her 21st birthday. She was born with acute spina-bifida, having many of the related
First off, dont feel sympathy, she would in her words have " kicked your ass" for thinking she was any less able or worthy of more sympathy than
Her kidneys failed when she was 17 so diallisis every second day in hospital was then also a part of her life. From aged 19 things seemed to
deteriorate eventually leading to her spending more and more time in hospital.
She often told me that she wished she could sing but because of her shunt behind her ear her singing sounded like, in her words " One long drawn out
note with a stop for a breath". We used to fall on the floor laughing at some of her descriptions of herself, her abilities and her things that made
3 months before her 21st birthday she decided she was having a party in a local night-club, she would hire it all for the night, including the band.
Invites to 300 people were to go out. ( I laughed at her delibrately nominating names as to who was not getting an invite !) and plans were put in
3 weeks before the party things suddenly went downhill. The docs suspected a small stroke and yet again we were spending time in hospital with tests
and needles and...well most of you will know the routine.
She insisted the party plans went ahead and in truth it gave all of us hope and a target to aim for.
A week before the party she asked me to stay back when her other visitors were leaving, of course I did and I took my orders in quiet with no one but
me and her in the room.
I was given a letter with precise orders to carry out during the party, not to be opened till the morning of her birthday. Any questions from me were
met with a gentle shhhhhhh, just listen and do. Trying to lighten the situation I told her I wasnt her slave and she could carry out her demands
herself. We both laughed, hugged and I new there and then that time was short. She asked me to bring her her favourite magazine in the morning and on
being told that it was a monthly, but I would try my best she said " Dont worry if you cant, it realy dosnt matter.
That night she went into a coma and for the next 5 days thats the way it stayed. The docs didnt give much hope not because of a specific problem, but
because of all the physical dissabilities together. She was tired, I could see that. Over those 5 days and nights I could not come to a decision
regarding the party. Invitations had been out for a while and everything had been paid for. I now know my lack of decision was based on not wanting to
accept she wouldnt be here, I mean everyone that plans a 21st attends their 21st ! yea?
The day before the party, the Thursday, as we were getting ready to leave to go to hospital, the nurse called. We were to hurry as time was short. On
arrival at her side room we were asked to wait outside for a few minutes and at that moment I opened the letter, it said.
I guess theres a chance that Im gone when you read this and if so I have one request. The party goes ahead. Supposing you dont tell anyone Ive gone,
it goes ahead. I would wish though, that you tell them to celebrate me like its the last party in time, get them all drunk if their tablets and pills
will allow it ( A high percentage of her friends were also dissabled), give out condoms if you want, but I need to know they remember me as I would
like to be and not as I have been for these years in hospital.
My mind had been made up for me and although it took a bit of persuassion to get other family members on board, our area was going to be rocked by a
party fit for hollywood.
On entering the room i could see all the many tubes, machines and especially the dialasis machine were gone. I whispered to the nurse how is she
pain-wise. She replied that she is not in pain and with a smile said " As a matter of fact she has been singing, humming on and off all night, such a
beautifull voice. I smiled and put a hand on her shoulder saying "Thanks".
It was going to be a long day so we took turns at going for a walk to stretch our legs. (Me, our father and her favourite cousin) The nurse would come
in and check her pulse and breathing every half our or so, and at 4.00pm she said she would like us to leave the room for a few minutes till they
refreshed her nightdress. We sat outside the window to the room and listened to the 2 nurses talk to her as they worked. Their respect was awesome,
and as one nurse said " I was telling your brother how good your singing was" she began to hum eidelvise, It was beautifull, pitch perfect and had
all three of us in tears.
When the nurses came back out I explained that she had always wanted to, but could never sing like that. She said thats because the shunt behind her
ear was not working now. But I knew differently
She died at 1 am on the morning of her birthday.
The next night 300 people had the party of their lives celebrating the life of my sister, sorry 301, because I know she was there as well.
Thanks for the OP, and for letting me ramble on a bit. I need to go look at a letter I keep safe.
[edit on 25-4-2010 by captiva]
[edit on 25-4-2010 by captiva]