Baby Sophia Grace Honzaki Shower

     It was a great afternoon - made for a party to welcome to our wild and wacky world, a new addition coming in May to the Honzakis, Her Beloved Highness (HBH) Sophia Grace. So Tutu Nancy, aunties and uncles were in attendance at Paul Gagnon's beautiful home in Kailua. It was also the setting for Tami and George's wedding shower last year, so it was only proper (according to Gerri) that we have it at the same place.  And like last year, we ordered Chinese from Kin Wah, onoliciously augmented by Tutu's yakisoba, Phyllis's potato salad and Armie's homemade rolls.  The moist and yumyum cake from Zippy's was paired with Penny's dreamy almond float (see recipe below).

Front: Robert Burkhard, Tami and George Honzaki and Paul Gagnon; Second row: Armie Burhard, Larry and Gerri Sylvester, Dale Mahi, Tanya Mau-Halsall, Divina Robillard, Nancy Fujino, Kathy O'Connor, Ronaele Whittington, Phyllis Johnson; Back Row: Brad Chun and Paul Mahi

Penny Chun takes Divina's spot while Divina clicks away.

 
     It was a also a day for catching up, as we rarely see the Mahis, Phyllis, the Burkhards, Tanya, and the Chuns, except for HALS events such as our annual yard sale, caregiver happenings, and socials.  So is it any wonder, why our socials are always something we look forward to and perennially a-buzzzzzzzz?

That was not Kathy's headgear for the day;
it is a lovely sculpture.
Phyllis laughs away.

The men in wheels chat away:
Paul, our wonderful host, and Robert.

Lovely ladies Penny, Tanya and Dale

   
     Tanya, our young mom closer in age to events brought about by weddings and storks, brought games such as the "Guess What's in the Diaper" game. Enjoyed by the group of course!

Dale inspects a diaper.

The Honzakis meditate on diaper on hand - one of the many in their future but not quite as delectably nice-smelling.

      For live action on the "Tinkle to the Loo" game (locally translated as "Hapai Making Shi-shi on the Lua"), watch Tanya's video, herein pasted from YouTube.

        


      The opening of presents drew lots of oooohs and aaaaahs as Tami lifted them from gift bags or ripped their paper wraps. Of course, the gift that got the most admiration was the handmade quilt that Aunties Ronaele, Phyllis and Penny, Tutu Nancy and I helped put together.

This princess is going to have lots of costume changes!

         The capstone of the afternoon is watching incredulity, wonder, and a mixed bag of reactions when I took out a bottle of gourmet civet coffee, also known as "cat poop coffee," to share.

                         

Hmmmmmm. Yum yum good.

   

Ronaele reacts when she hears she is drinking coffee
from berries that made it through a feline alimentary system!

     And here's the famous Almond Float by our very own Barefeet Contessa Penny Chun:

ALMOND FLOAT

Unflavored gelatin (4 T or 4 envelopes),

Water

1 1/2 cups sugar

1 1/2 cups (or 1 12-oz can) evaporated milk

3 T Almond extract

mandarin oranges, fruit cocktail, canned lychee

      Dissolve gelatin in 1 cup water. Set aside. Boil sugar in l cup of water. Add gelatin mixture to sugar mixture and stir until completely dissolved. Add milk and 4 cups water and almond extract. Refrigerate until set, about 4 hours or overnight. Cut into cubes and serve with the fruits.

            Using milk or soya milk or rice milk

Dissolve 4T. gelatin with l c. of water

Heat l c. of water with l l/2 c. of sugar and dissolve. Then add gelatin/water mixture till gelatin dissolves. 

Add 5 l/2 c. of milk and 3T. of almond extract.   Refrigerate for @4 hours till set.  Cut into cubes. 

Add fruit cocktail, mandarin oranges, lychee or whatever fruits you desire. 

   

   

      There were many fond memories made this day, the better to share with HBH Sophia Grace when she finally makes her royal entrance.

      Our thanks to Paul who opened his home again for this event; Gerri for being such a sweet hostess; Larry for sharing his gift of artistic decoration; Phyllis, Armie, Penny and Nancy for more food; Tanya for the fun games; and the supporting cast of aunties and uncles who made the afternoon a time to remember!

Caregiver Series 1: Becoming a caregiver

     Chances are if you are married to a person with ALS, you are a caregiver.  More likely you are a woman, since ALS affects more men than women.  Demographics is just one of the many predictors of whether you are a caregiver or not.  There are also some deeply held values called attitudes that will hold impact on whether a person is a caregiver or not.  Attitudes affect making the choice to be a caregiver or not.

      Choosing to provide care for a person with ALS (PALS) is a tough one to make.  What we know about ALS and what kind of care required informs us so.  We know now that ALS can be a debilitating, chronic illness, although it is commonly thought to allow an average lifespan of 3-5 years.  Many PALS live beyond 5 years – as much as an estimated 25% of diagnosed persons, thanks to better management of the illness with better knowledge of the disease process, better medical technology and strengthening of community and home/social resources.  We also know that the course of the illness and the muscle groups affected are highly individualized.  Because of this, it is hard to predict with reasonable success, the pattern, extent and areas involved from person to person, and therefore, renders pinpoint preparation tenuous.

     All these suggest that the caregiver will meet with real challenges – big, almost insurmountable ones.  But once the choice to be a caregiver is made, one must arm the self with the knowledge, skills and attitudes that will serve one well.

     Following these series is one of those ways.

We Sprung into Spring Last Tuesday!

   The weather turned out fine despite the gloomy skies and wind of the morning.  There was even a glorious sunset to boot, as guaranteed.  The ono grindz is legendary, no question.  When the group gets together, it is always a good time.  Adrianna, MDA Exec Director, introduced the newest members of the crew: Fundraiser Jade and Health Care Services Coordinator, Jeana.  Welcome aboard, ladies!

   Never mind that Phyllis J, Ronaele W, and Tanya M-H - kids Zach and Chase in tow - came a little bit late.  They were immediately engulfed in the camaraderie and conversation.  

   As always, these pictures will be our guideposts in memory and look forward to our next beach happening in October, when we "Fall into Fall."

    Meanwhile, next month (April) we go back to the Queen's Conference Center for our regular meeting.  Thank you, everyone who came to the beach, for your presence, potluck contribution and the fantastic fellowship!

Back: Dale Mahi, Tami Honzaki; Front: Jessie Koppel, Nancy Fujino, Jeana

Paul Mahi and Bruce 

Guests Angie and Cecilia

Kathy O'Connor

Our buffet table with KathyO

Jessie's ono pasta

From Divina's calamondin tree

Kathy O's yummy salad and chicken

Portuguese Bean Soup!

Nancy's veggie curry

The MDA Ladies: Jade, Adrianna, Jeana and Niki

The early bird group

Dale's captive audience

Look over here and smile!

Ronaele Whittington and Phyllis Johnson

Tanya Mau-Halsall with Chase and Zach

The shadows are lengthening as we chow down.

Starting a "Caregiver Series"

     If you have noticed, this blog provides a variety of information about the ongoing life of Hawaii ALS Support Group.  This group meets every second Tuesday of the month at the Queen's Conference Center, at the corner of Beretania Street and Punchbowl in Honolulu.  It started about 12 years ago, when Joyce Okahashi and I brought the need of organizing a group to the attention of then MDA Directpr Kathleen Hurtubise.  Since then, the group has been meeting regularly, thanks to the unrelenting support of MDA.

    One way to continue to help families with ALS everywhere is to provide a forum in which information about caregiving is offered and discussed.  This blog will start a caregiver series, in which relevant topics are introduced and reflected upon.  Comments are welcome; in fact, encouraged!

     What do you think?

Ushering in March

        Ever wonder why February is a such short month?  That's because we all can't wait for winter to go and for Spring to start! Who is not ready for the scent of flowers, gentle breezes, light showers? March cannot come any sooner!

        March 2, Saturday! Yes! The first Caregiver Breakfast of 2013 happens! A while back, in the early years of the Ohana, we organized breakfasts on selected Sundays, exclusively for caregivers. In private as well as  during meetings, caregivers had always expressed the need to get together and talk story.  I added the part where they do it while eating ono grinds.  Gathering caregivers together was also a way of empowering women, who generally, take up the responsibility of family caregiving. In the spirit of fun,  we joked that men who wanted to join needed to be bestowed the title, "honorary women." The many get-togethers that followed were always well attended, especially when we chose to alternate the breakfasts with afternoon teas.  Hoping to build on this success, we would like to reinstate these outings beginning this Saturday, again, for the same reasons - to offer respite, camaraderie and exchange of valuable caregiving wisdom.

     In the spirit of abandon created by our "March into spring", our regular meeting will give way to another social, "forced" upon us by reason of an unavailable room at the Queen's Conference Center.  Our "Spring into Spring" event will be held on Tuesday, March 12, 5:00 - 7:00 pm, half an hour earlier than our usual meeting time, at Ala Moana Beach Picnic Site #30. Conveniently located close to the handicap parking stalls and the comfort station, this spot has been our favorite.   Please bring a potluck dish to share.  A glorious sunset comes guaranteed.

     Then, on March 30, Saturday, we will have a baby shower for Tami and George Honzaki.  Tami's dad, Lloyd Fujino, had ALS; so did George's mom, Elsie.  Tami and George both came to support group meetings with their parents. When both parents passed away, Tami and George continued to come to support group meetings and participated in all events of the group.  We lovingly watched in the sidelines as a romance blossomed in our midst. We were happily there when they eventually walked the aisle.  And now there's a baby girl making an appearance by Stork in May. Some group aunties are stitching together a quilt for her.  Naturally, a baby shower is in the works at, where else? Paul Gagnon's home, where the wedding shower was held!  We will talk about the details on Saturday and will post them here...

     That should wrap up March and we look forward to April!!!

Ode. Once again

Why take two steps

The last one just ended

In a ditch;

The colors are off and

The note is written in sap

Take it easy.

Oh, take it easy.

The chemistry is gone

Awry.

But I hear you 

In seamless harmony.

I ain't going yet.

And when I do, I ain't going far.

Only to the closest star.

It's About Love

     'Tis the month of hearts, after all, so what's more apt a topic than love? Families living with ALS need oodles of love, not only to survive, but to thrive.  What kind of love is that which nurtures the ability to rise above mere existence?

     A nurturing love is the kind that takes commitment seriously. A person with ALS needs the assurance that he can depend on someone's caring. When one is vulnerable to a disease that saps physical vitality, erodes self-confidence, and keeps one feeling helpless, it is only too easy to succumb to despair.  To rebuild despite the daily destruction of muscle and image, one needs constancy in others.

     The only thing predictable about ALS is the fact that it is a willful, tireless, petulant and capricious enemy. Its course is highly individualized which makes it hard to generalize from the population it affects. One can only hope that, for the victim, it decides to be indulgent. Those of us who love need to persevere through the ups and downs that mark the course of the illness.

     When we say our love is strong, we must mean that it is strong enough to realize its imperfection - that it can wane,  not because it no longer cares, but because it also needs nurture. It should seek ways to renew itself - like a soldier in battle that understands he needs reinforcement with sleep, rest, food, respite, fresh supplies. We who love should seek to maintain equilibrium in ourselves so we can deal with daily chaos and an uncertain future.

     ALS is relentless. Our love should likewise be.