[tri-med] Paige

For those new to the list and who never got the opportunity to meet Paige I
thought I might give a brief edited version of Paige's story.

Paige was born about 50 years ago now, Back in a time when chromosomes were
only just being identified and "Edwards Syndrome" was just being reported in
the literature. Paige wasn't diagnosed as having T-18 - rather her family
were told that she had Down Syndrome (not that Paige had any of the typical
T-21 characteristics - but.........)

There were no special schools back then so Paige, lived with her parents and
went to a mainstream school for most of her life. Paige did OK but
struggled - no IEP's, no technology support, no therapies - everything she
did was on her own.

Paige was happy - but one day, when she was about 14  her mom met her at
school and told her that she wasn't going home, she had a new home. Paige
was taken straight from school to a Mental Institution. No farewells, no
fanfares, no packing. Paige's family had been advised that she had no future
as an adult and that the best and kindest thing to do was institutionalise
her.

So for the next 20 years Paige spent her life in an institution in Ohio. Her
job was to look after and love the other babies. There is no doubt in my
mind that she cared for many of "our kids" and why she always loved "our
kids" - I know she adored Alex.

Eventually the time came when society decided institutions no longer had a
place - and Paige was "de-institutionalised". Paige was given a "helper" to
live with her in the community (Daisy is the helper I remember) and for the
first time Paige got to choose what she wanted to do. Paige chose to go back
to school - or University.

At school she was down on the books as having Down Syndrome. One of her
lecturers couldn't believe it. There was no way she appeared to have T-21.
Paige had problems - she was deaf and spoke as a deaf person, which many
people took as being "retarded". She certainly had health issues (mainly
lungs and kidney) and physical problems (walking was difficult). But Paige
got around campus, passed all her classes, she was really a part of campus
life, made friends, was a bridesmaid at friends weddings and a whole lot
more. Not what anyone would expect from T-21 let alone T-18.

During her college years someone suggested that Paige have her chromosomes
tested. That turned the world, and especially Paige's world upside down -
Paige had T-18 mosaic.

Paige finished Uni and gained TWO teaching degrees in Ohio. But she went
into a different type of teaching - she taught the world. Paige started a
self advocacy group for people with a disability which still exists (and
flourishes) today. The beautiful irony is that Paige sat as a peer on boards
with the very directors of the institution that she spent most of her life
in. Paige was also the first member of the SOFT US board to represent
someone with T-18.

Paige became an inspiration to many - she appeared on the Today Show and
many of the film crew have written to me over the years telling of how she
inspired them. Her life story appeared in Hope magazine. Many of her friends
from College have written and told me about her life, sent me photographs of
her laughing and living a very full and rich life.

I met Paige in 1997 in SLC at the SOFT Conference. It is her smile that I
remember the most. The simplest things made her smile, and when she laughed
her whole face lit up and you couldn't but help to be caught up in that.
Some people made negative comments to me about Paige at conference, I feel
sorry for them because they obviously never really knew or understood. She
was a warm, loving and incredibly sweet person. My hero.

When Paige died she was living in Maine. She was the first person with a
disability to work for the State of Maine as a consumer advocate. Her health
was deteriorating but no-one could work out exactly what was happening.

In 1999 just after the SOFT Conference Paige became ill with a respiratory
infection. She was put into hospital and eventually fell into a coma because
she went into renal failure. After two weeks her family decided that it was
time and they turned off the life support. Paige was 47 a few months short
of her 48th birthday.

My last email from Paige must have been a few days before she went into
hospital. We were discussing her coming to chat and talking to everyone.
Paige was and still is my inspiration. Paige not only overcame T-18 and all
the negativity that surrounds that, she overcame ignorance, prejudice, bias
and so much more. Many of us, me included, so often have bad thoughts about
those who allowed what happened to Paige to happen. But Paige never did -
there was not an ounce of resentment in her body for her family, for the
people in the institution, her non-supporters in life. Paige loved them all
and had a greater capacity to love and understand than I ever will.

Paige is and was my inspiration. I know that she is in heaven holding all
our newest angels, loving them and telling them about their mums and dads. I
wish she were here though to laugh at me and marvel about the wonders of
email (she never got over being able to talk with someone from Australia
:-))

And so I wonder if the story writers for Judging Amy met her sometime
(especially as the baby is supposed to have 7% effected cells - identical to
Paige's official percentage). If this new little baby will help to break
down a few barriers. I hope so.

I miss Paige - at the moment really badly - excuse me I am going to go and
cuddle Alex and Hope Bear and have a good cry.

"Love's the only house big enough for all the pain in the world"
Martina McBride


Keep Looking For Rainbows!!
Karen, Mum to Alex (8 years, T-18 Mosaic)

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

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