Zelie Piikea
11/23/29 - 3/4/01

My mother died Sunday, a holy day in my mind
as I try to grasp the enormity of her.

She didn't choke or fall like I've feared for twenty years,
those fears released forever more.

It doesn't have to be that way,
wishing I knew this years ago.

She died with the grace of who she really was,
not the disease that ravaged her body and our souls.

She simply waited for my father to make his
daily trek to the convalescent hospital.

She waited through the thirty minutes of their
favorite songs that he played for her every day.

And after "Aloe Oe",
the song of good-by from her homeland,

A tear appeared to travel
the eternal distance of her face.

And away she went to dance the hula
at the big luau.

Sharon Dunn
3/8/01

I want to thank each one of you for all you've given me in support as I accompanied my Mother to her death and beyond. As many of you know, my mother had Huntington's Disease. My Great Grandmother, Grandmother, Mother and now my Brother inherited this gene that somehow escaped my sister and I. My brother has two boys at risk with a 50/50 chance.

My sister and I were talking yesterday about how lucky we are. I laughed at her at first, but then we did find ways in which we are lucky. For one, many families with HD have more children with the gene. We only had one out of three. Families can be destroyed by this disease but ours grows closer and the bonds strengthen us beyond belief.

My mother's brain was harvested for research and sent to the Brain Bank in Los Angeles, so even in her death she fights for her children's children. We are taking her ashes to Hawaii where she will be buried in her family's plot. The Hawaiians are big on family and tradition. We will celebrate her in style where she was born and raised. She is finally going home.

Again, thank you for surrounding me with a community that heals me. I realize this new journey has just begun and I will need your support. My husband, Chris, is a commercial/industrial Real Estate Broker who, after 28 years of watching my family members with HD, has a dream to build a care facility for people with HD.

Have you had trouble placing your loved ones in a care facility? Do you get the response we do when we mention their diagnosis? When and if you get lucky and they get admitted somewhere, are you amazed at how they are cared for by people who know nothing about HD?

Well, we have a dream...to build a home for people with HD only. I say "home" because we want to welcome them at whatever stage they are at. We figure that they can take care of each other. Those who are able can help those who are disabled. Their home would be a haven for them, where they would no longer be isolated. You know what I mean?

I remember when my brother was diagnosed and he said, "Oh my God, I will never be touched by another human being again." And accept for the hugs he gets from us, that is a true statement. He was a Landscape Contractor and loves to garden. Wouldn't this dream home look lovely?

My sister is an Administrator at Sonoma Developmental Center, a facility of 900 clients born with developmental disabilities. She has her master's in Social Work and would love to support us in our dream.

The land we have found in Napa, California is about an hour away from the HDSA center at UC Davis where our residents could get excellent medical care. It's 2.5 acres, already approved for 61 single-room beds and ready for building permits; 27,000 sq.ft. at approx $100 a foot to build. The land will cost approx one million dollars.

In California we also have the GHPP program (Genetically Handicapped Person's Program) which helps people with HD. California is a great place to live!

I thought I'd just put our dream out there because that's the only way dreams come true. We are looking for money to build this dream so that we no longer have to look for a home for our family members with HD. Every time a door shuts in my face, or my family is rejected, I look back on my dream and wonder when it will come true.

I see this home with lovely gardens, a theater, lots of comfortable-protected from the weather-designated smoking areas (do any of your family members with HD smoke? Ha...). I see a lovely, welcoming living room where people come together for support, love and care. I see my fantasy kitchen, pungent and inviting, where high calorie meals are always cooking. I see professionals who have HD working beyond the time they would be allowed to work otherwise, and helping others so that having a purpose inspires a longer and healthier life. I see a music room with a Steinway baby grand piano and every instrument ever made, and me, the music therapy icon in my glory...I see people dancing, singing, eating, playing, crying, laughing, living...not dying.

That's our dream.
Sharon Dunn
Shareon*at*aol.com
1584 Milton Rd
Napa, CA 94559
707-251-5730

Your poem was so nice and your dream is beautiful. I hope it works out for you. My brother came over the other day and he looked much thinner than he had three weeks ago. I immediately fixed him lunch! He takes a long long time to eat. It was so sad to see how his cheeks have caved in, so very thin. I think he would like to go to a home such as you describe, if only it could come true!