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hi Crew - a msg from Jordan's Mom -

hugs, LynnBK

Hi Lynn,

Please forward this to the crew. It's from Annette, Jordan's mom. Thanks.

Hugs, Amber

October 6, 2000

For Jordan's friends on the Crew,

It is raining today and will soon be cold. This was not Jordan's favorite

type of weather, but she knew I soared when presented with these blustery

days and would call me, " Nanook of the North! " Actually, I remember her

loving the rain when she could hear and, so, I listened for two rather than

one.

How do I begin to tell you what your friendship meant to her? Where are the

words in our English language that can convey who she was and what you are?

Jordan had a marvelous sense of " timing " about her NF2. She seemed to work

always toward God's " Quality of Time. " When the moment came, she died at

5:00

on Wednesday morning, October the 4th. Her death occurred after six days in

a small fishing village in Maine where she had been visiting a friend. Ben

and I had tagged along to carry the luggage!

Jordan was in her own bed, in her own home, at the time she passed away.

That was terribly important to her. She treasured her upstairs home area,

the place where she kept her communication equipment, her braille books, and

pictures of friends, family, and Winston, her cocker spaniel; where she

welcomed her friends for visits and conversations and laughter.

As we visited on the flight home, we continued a discussion that had begun

two weeks prior to our Maine journey. The thrust of the discussion revolved

around the changes we would need to make in our home to provide the safety

she needed. She had lots of good ideas. And although her conversation was

open and direct, I felt a sense of sorrow and saw sadness in what could

easily result in the last vestiges of independence. It was not a place she

wished to go---she told many of us that, time and time again. Jordan was

often subtle, but she was not so subtle when it came to her desire for

independence. She fought very, very hard for that. And she won!

When I think about the relationship she and I had, I marvel at how we

managed our love, our space, our friendships, our faith. What mother do we

know who

would be privy to their daughter's most personal and intimate feelings?

As she became blind, she gave me a precious gift when she allowed me to act

as the messenger between you and she in your letters and correspondence. I

accepted that as the most precious of gifts--for she gave me your thoughts

and fears and dreams. Hopefully, I was able to honor you and your love for

Jordan each day, each week, each month.

We come now to the time when we must allow Jordan to be pain-free, to dance

and sing, and to enjoy, hearing and seeing, those with NF2 who have preceded

her. For Jordan, the " NF2 Monster " is no more.

Jordan asked that she be cremated and that she have a memorial service at

her church, St. s's Presbyterian in Lake , Louisiana. We will

celebrate her " freedom in grace " on Sunday, October 15th at 3:00 in the

afternoon. Should you come, there will be a place for you with my family.

One more request Jordan made is that if anyone wished to recognize her in

some way, that, rather than flowers, a small donation be sent to The

National Neurofibromatosis Foundation, Inc. (NNFF) located at 95 Pine

Street, 16th

Floor, New York, New York 10005.

My family will also establish a memorial fund in Jordan's name for people

with disabilities at McNeese State University. Those funds will provide

equipment and services to students at McNeese who need special assistance.

We must always remember that " Love bears all things, believes all things,

hopes all things, endures all things. " (1 Corinthians, 13:7)

Good night, Annette Harlow

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