[tri-med] TRISOMY 17 and other spell makers/ Theresa & Sharon

Sharon I want to say first off here, how I appreciate your honest 
expression of your feelings in regard to your son. I am often in awe 
when I read families stories on this list. I have been on the list 
for eleven years now because of our grand daughter Tess.

When Tess was born we were given the same extremely negative 
prognosis that others have been given by the medical profession. Her 
parents (our son and his now ex wife) were told to take her home to 
die. So we began a day to day program to keep her as comfortable as 
we could, make her life as good as possible. In the first five years 
of Tess's life, I was a primary carer. (Mum, Dad and Nanna) Gradually 
(that should be VERY SLOWLY) she began to respond, and from the very 
first she had cast a spell on me/us and every little accomplishment 
was a welcomed revelation of how wonderful it was to LOVE this 
beautiful little girl. Certainly it was not an emotion I had 
expected, since I was brought up in the "old school" of being afraid 
of disabled people. I am forever grateful that I got this chance in 
life to be a part of Tess's journey, however long or short it may be. 
As some one else has said there is a lot of joy to be had from their 
life. I look on my conversion to acceptance and love as a special 
gift Tess brought me.

Tess's journey so far, has not been easy. She is wheelchair 
dependent, can not speak, or feed herself. But there is so much more 
to her personality than being labelled a disabled child. She 
expresses love, joy, pleasure, displeasure, cranky-ness, disdain, 
humor, and UNDERSTANDS a great deal of what is going on. She laughs 
appropriately when we are in a family group situation and someone is 
telling something funny. She loves music, and beams when we sing to her.

Tess has only recently had a mic-key fitted for feeding, but still 
eats by mouth too. She has pulmonary hypertension, scoliosis, and 
reflux which is treated with omeprazole.

I have called our kids "spell makers", as I am convinced they bring 
with them this ability to open our eyes to the positives and give us 
the courage to continue on a task which we had shied away from in the 
beginning. No it is not an easy road (the divorce rate is 75% in 
families with a disabled child I believe). Sadly our family was in 
that statistic. However, one thing that has not changed is the deep 
love we all have for Tess.

All the best for the future.


At 01:26 PM 28/05/2008, you wrote:


>he is now 11 months old, and weighs 15 lbs, (gained 3 lbs since he 
>got the tube) he is the sweetest boy ever and up until 3 months ago, 
>i regretted having him. i have never heard anyone else on this 
>website say that, but i am being very truthful, when i say i 
>regretted not having an abortion and felt like my life was over 
>during the first few months of his life.
>
>
>all the best,
>Sharon
>

Jocelyn, loving Nanna to Tess with Trisomy 18, age 11 years
.  

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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