The Days of Our Lives by leader6

VIEWS: 8 PAGES: 6

									                          FAMILIES
                          OF
                          CHILDREN
                          UNDER
                          STRESS
                                                   FOCUS
                                                    Volume 25, Number 4                                              July/August 2008




                                      The Days of Our Lives
                                                            By Stephanie Shapiro

H     annah was our first child and when I held her in
      my arms, I felt our life as a family had just begun
and the journey ahead would be filled with joy and
                                                              Jake’s lives
                                                              would be. I
                                                              am supposed
celebration. I had eleven wonderful hours of endless          to be the
dreams for her. I thought about first words, first steps,     brave one in
and holidays filled with traditions and laughter. Then        my family. So
she was cold and breathing too quickly. They just had         I wait until
to warm her up in the NICU. That is what the doctors          all is quiet,
told me. When the doctor entered our hospital room,           and I cry.
turned off the television, and looked at my husband           Sometimes
and me with genuine concern in his eyes, I knew our           it is in the
life had changed. Nothing prepares you for a lifetime         shower,
of grief for the child you dreamed of.                        sometimes, it is late at night when I know everyone else is
                                                              asleep. It is my secret. For everyone else, I hold my head high
Our son Jake was different. With him, I didn’t even           and smile. I am the positive one.
get 11 seconds of wishes and dreams. Jake was an
emergency C-section. I felt cheated. I didn’t even get        Last year, my “grieving days” were Halloween and Christmas.
to feel his birth like I had with Hannah. His troubles        It would have been the first year that Hannah and Jake “got
started before he could even take his first breath. I         it.” Dressing up, saying “trick-or-treat,” sitting on Santa’s lap,
often feel sorry for Jake because I knew right away           baking cookies, and tearing open beautifully wrapped gifts
what his life would be. At least Hannah had those             left under the tree. Instead, there were no adorable matching
fleeting moments of amazement.                                costumes, and there was no Christmas tree. I didn’t see the
                                                              point. Hannah and
Both Hannah and Jake have mitochondrial disease.              Jake couldn’t run up
There is no cure or treatment. It is progressive, and         to the neighbor’s door,               Inside This Issue
their prognosis is poor. In our house, we count seizures      knock and yell for
the way some parents count how many times their               candy. They could not          Contributions .....................page 3
curious toddler asks, “Why?” At 4 and 3, Hannah               gleefully whisper to
and Jake are nonverbal, non-ambulatory and are fed            Santa all they wanted          Equipment That Works ......page 4
through a 24-hour feeding tube. This is our life, and         for Christmas. In our
for the most part, I walk with my chin up, a slight           house, there would be          Coming Up..........................page 5
happy bounce in my step, and feel blessed to be               no reindeer ornaments
Hannah and Jake’s Mommy. They are the light of                made with little hands.        Looking Back ......................page 5
my life. They have taught me more than I could ever           Their tone is far too
imagine. They have taught me strength, patience, and          high to open those tight
courage. They are my magic.                                   little fists.                  Visit our web site at
                                                                                              www.focus-ga.org for information
Then there are the days I grieve. I grieve for what I                                         and upcoming events!
                                                                (Continued on page 4)
thought my life, my husband’s life, and Hannah and

      3825 Presidential Parkway, Suite 103, Atlanta, GA 30340 • Telephone 770-234-9111 • Fax 770-234-9131
Page 2                                                                            FOCUS                               Volume 25, Number 4

BOARD MEMBERS
Read Davis, President
Kathie Teta, Vice President
Saxon Dasher, Treasurer
                                    Paul Ladd
                                    David Monde
                                    Greg Pappas
                                                                                                         From the Editor
                                                                                                                 by Lucy Cusick
Allison Pellettieri, Secretary      Michele Pearce
Jeff Beech, Past President          Ryan Reavis
Roger Brown                         Jason Rigsby                                   Ok. I am shamelessly plugging a FOCUS fundraiser.
Kitty Correll                       John Seidl                                     I know, I know, my job is to inspire and encourage
Jerry Couvaras                      Julian P. Wade, Jr.                            families, to help them identify problems and find
                                                                                   solutions, to sympathize then there are no easy
ADVISORY BOARD                                                                     answers, to find humor where there seems little to
LuRae Ahrendt                                                                      laugh about.
Renee Bomar                         Nicolas Krawiecki, M.D.
Robert Bruce, M.D.                  Debra Foster McElhaney
                                    Thomas Mahon, M.D.                             I take that role very seriously. But, we all need to eat.
Robert Campbell, M.D.                                                              And I take that job seriously, too.
Joanne Janas, M.D.                  Barbara Weissman, M.D.

FOUNDER AND ADVISOR                  Susan Calhoun                                 The FOCUS Cookbook is HERE!!! And it’s good!

STAFF                                                                              Beci Falkenberg doesn’t like to take the credit, but I
Lucy Cusick, Executive Director                                                    like to give credit where credit is due. She entered
Joy Trotti, Associate Director
                                                                                   every recipe into the cookbook program, she proofed
Patty Vastakis, Office Manager
Karen Greenfield, Respite Coordinator                                              each one (several times), she deciphered the cookbook
Celia Lawton, Community Involvement Coordinator                                    manual (no easy feat), and (most importantly), every
Angie Weiland, Parent Support Coordinator                                          time she came to the office, she brought SAMPLES!!
Karen Davis, Program Assistant                                                     Easy & Delicious Biscuits (three ingredients), Super
Stephanie Shapiro, Program Assistant
                                                                                   Quick Chopped Salad, Peanut Butter Cookies (also
MISSION STATEMENT                                                                  three ingredients). I even shared my famous not-so-
FOCUS offers emotional, informational, and physical support to families of         secret recipe for IEP Brownies. In the words of my hero
children with disabilities or with ongoing medical conditions through a vari-      Rachael Ray….Yum-O!
ety of programs such as support groups, respite care, and summer day camps.
FOCUS networks parents who share common experiences and information                “FOCUS on Food” contains Extraordinary Recipes
with each other, providing a sense of community to families with children with
disabilities.                                                                      from the Extraordinary Families of FOCUS! It
                                                                                   concentrates on the quick & easy, but has a few recipes
SUBSCRIPTION INFORMATION                                                           for lingering in the kitchen. There’s a “FOCUS To
For subscription information, please call FOCUS at (770) 234-9111 or visit our     Go” section for easy recipes to take to therapy or to
website at www.focus-ga.org. Annual subscriptions to the newsletter are $15 for    picnics; there’s even a “FOCUS Kids Cook” section
families (waived if necessary) and $30 for professionals.
                                                                                   with fun recipes for children and includes a few Camp
                                                                                   Hollywood favorites! Each section divider spotlights
                                                                                   a FOCUS program, complete with a photo from a
                                                                                   FOCUS event.

                                                                                   If you really want to get on our good side, check out
                                                   FOCUS                           a whole box of cookbooks and sell them at work or
                                                   on Food!                        church. All proceeds go towards FOCUS programs!

                                             FOCUS Cookbook                        Just think. By August 1, your holiday shopping could
                                              celebrates FOCUS                     be complete! You won’t need to use gas to shop! You’ll
                                                                                   have extra time to enjoy holiday festivities!! Your
                                           children, families, and
                                                                                   friends and family will appreciate your gift because
                                          food! Buy several – $20
                                                                                   “FOCUS on Food” will make their life easier (and
                                            each, 3 for $50! Call
                                                                                   yummier!) and they will learn about an organization
                                          FOCUS and order now                      that helps your family.
                                             – supply is limited!
                                                                                   A tip of the chef hat to Beci for sharing her time, talent,
                                                                                   and ingredients. Excuse me, while I grab another
                                                                                   peanut butter cookie. n


                                        770-234-9111 • inquiry@focus-ga.org • www.focus-ga.org
Page 3                                                    FOCUS                                      Volume 25, Number 4

                                               Scott & Anita Tiedt                   Eagle Angels
                                               Scott & Amy Vinson                    Associated Hygienic Products
                                               Jane & Jim Wells                      Randall A. Coggins, DMD
                                               Mike & Kristy Wolford                 Billi Marcus
                                                                                     Jones Day
Many thanks for all contributions to           Honorarium                            Kiwanis of Suwanee
FOCUS. We work diligently to use all           In honor of Nick Kostopoulos by       McGriff, Seibels & Williams of
contributions to help families of children         Scott & Christine Kendall             Georgia
with disabilities or ongoing medical needs.    In honor of our teacher “Mrs. B”      New South Construction
                                                   (Marisue Bevacqua)                Sibley Heart Center Cardiology
Corporate/Foundation                               by the parents of Chamblee        TRX
Aetna Foundation Matching Gifts                    Methodist Kindergarten            Westrope
AutoTrader.com                                 In honor of Brian Wiener by Anne
The Lee Bachman Youth Fund, for                    Nieberding through Hewlett-       Birdie Angels
    Camp Infinity                                  Packard                           Atlanta Bread Company
BellSouth Matching Gift Center                 In honor of Frances Jackson on        Liberty Mutual Property
Fulton County Human Services                       Mother’s Day by Liz & Hardin      The Hartford
    Department (F.R.E.S.H.) for Camp               Watkins
    Hollywood in Alpharetta and Johns          In honor of Cass & Laura              Hole Sponsors
    Creek                                          Netherton by Betty & Lloyd        Ahrendt Rehabilitation
IBM Employee Services                              Netherton                         CMS Companies
The Keith W. Mason Family Charitable                                                 Horizon Liousine
    Trust                                      Memorials                             Integro Insurance Brokers
Second Mile John Wieland Homes &               In memory of Jordan Dicello by        MetDESK
    Neighborhoods                                 Marianne Schlinkert                Mizuno USA
Stone Mountain Chorus – Singing                                                      Precept / Bridgestone Golf
    Valentine Donation                         Special Thanks                        Ian Whittemore, in honor of TJ Hughes
SunTrust My Cause Charitable Giving            To Clark Kjorlaug for his donation
    in honor of Joyce Bagley                   to FOCUS as a part of his Eagle       Individual Donation
Variety of Georgia                             Scout Project (see photo below)       Kristeen & Allan Rowley

Individual Contributions                       To Jackie Rush for donating over      Thank you to all of our sponsors, raffle
Jennifer & Brian Beatty                        120 Specialty Beanie Babies           contributors & golfers! We had a great day
Brent & Vickey Bechard                                                               “FORE FOCUS!”
William & Martha Blincoe                       FORE FOCUS Golf Classic
Luther & Laura Boggs                           Title Sponsor
Damon J. Butler                                VSS
Stacey & John Crouch
Francetta C. Crowley                           Fairway Angel
Wayne & Lucy Cusick                            Avnet
Kelley Ellman                                  Hole-In-One Angels
James & Ayoca Freeman                          E*Trade Financial
Richard & Stephanie Kieszak-Holloway           Snodgrass Foundation
Jane Langan                                    Graphics Central
Chante R. LaViscount
Memri Lerch
Dr. Ira Levy
Carl Linderoth
Lenore Maslia
Kathy McMillon
                                                                                         First Place FORE FOCUS
Gemma Neumann
                                                                                               “Team Jimbo!”
Richard & Pat Olney
Robert W. Reavis
Ryan & Lauren Reavis
Richard J. Roberts
Jeri Russell                                                                 Accepting Clark Kjorlaug's Eagle Scout
Sandy Rust                                                                   donation is Boy Scout James Seidl and his
Thomas H. Sinks                                                              parents

                                   770-234-9111 • inquiry@focus-ga.org • www.focus-ga.org
Page 4                                                    FOCUS                                       Volume 25, Number 4

The Days of Our Lives
(Continued from page 1)                                                     Equipment That Works!
This year, it was Mother’s Day. I wasn’t expecting it, but the grief
                                                                        Staying cool in Hot’lanta is difficult – if you’re
hit me hard. I walked into Hannah’s room, laundry in hand. I
was putting away bibs she should have outgrown years ago. I             sitting in a wheelchair, it is practically impossible!
saw the oxygen machine and fell to my knees in tears. Sobs,             Keep your cool with one of these cool sports towels
actually. I cried for the life I so dearly missed, yet never had.       that are on the market:
I cried for the hand-made Mother’s Day cards I would never
receive and the temper tantrums I would never witness. I cried          Cramer Stay Cool Sports Towel: rinse with
for never having first steps or first words. I cried for my husband     cool water, apply to head or neck. The patented
who will never coach his son’s basketball team nor instill fatherly     material absorbs sweat, water, and keeps you
fear in his daughter’s first boyfriend.                                 cool. The Stay Cool towel comes in two sizes
                                                                        and is machine washable. Order from www.
When my husband returned home, a card from Hannah and                   medcosupply.com. $15.45
Jake in hand, he saw my tears. I quickly wiped them away, but
he knew. His only words were: “I understand, there is a Father’s
                                                                        The GAMA Cool Band is a similar product, often
Day too, you know.”
                                                                        found in the tennis section of a sporting store such
That Monday, “grieving day” over, I had the bounce back in              as Sports Authority. The GAMA Cool Band is $5.95
my step and a smile on my face when Lucy asked me how my                and can also be found at www.gammasports.com.
Mother’s Day was. I bravely told her my secret, how I cried all
day. I was shocked when she said, “Yep, I figured this might be         And more that (sort of) applies to staying cool!
your year.” She got it. She got it because she has also lived it.       This from one family: our son with physical
How quickly we can forget we are not alone. At FOCUS, support           disabilities learned to shower independently
is never-ending.                                                        when he was 16 years old. Initially, we thought
                                                                        that the transfers in and out of the shower would
This weekend, my friend’s daughter graduated from preschool.            be the biggest issue; that was actually the easy
This was another brief moment of grief for me until I received          part! Showering thoroughly actually proved to
the frantic telephone call. My friend’s beautiful and “perfect”
                                                                        be just as difficult. Because his hands have limited
daughter, dressed in her cute little 4-year-old graduation gown
                                                                        movement, he had trouble reaching areas that
and standing so tall on stage for all the world to see decided this
                                                                        need to be cleaned every day (like armpits). We
was her moment to shine. All eyes were upon her as she spat her
first glorious and disgusting spit in the direction of her classmate,   tried long handled brushes (soap slithers off),
payback for transgressions only another four-year-old could             washcloths (too difficult to soap & he dropped it
possibly understand. Needless to say, I took this as a personal         several times a shower), and shower mitts (can’t
celebration moment. My daughter would NEVER in a million                put them on). Finally, after two years of hit-or-miss
years do something so awful and embarrassing to me. YEAH,               showers, I went to Target on a mission ... Operation
Hannah!                                                                 Pit-Scubber!!

My friend’s horror at her daughter’s (in retrospect) minor              And Mission Accomplished! In the dishwashing
moment of poor choice reminds me to celebrate all the little            section of the Home Section (there really is an
moments of joy and yes, surprise. It also reminds me that we,           aisle!), I discovered several handheld dishwashing
as parents, ALL have moments of grief for what dreams we
                                                                        ‘tools.’ Most were potscrubbers, not perfect, since
have weaved for our children, disability or not. I am absolutely
                                                                        he didn’t need to be scoured, just cleaned! I found
positive my friend did not dream of spit flying through the air at
                                                                        a wand-shaped cleaner for glasses called the “Oxo
her daughter’s first chance at Pomp and Circumstance. We are
not as different as we may think. As parents, we are just meant         Good Grips Soap Dispensing Dish Wand” for
to love, guide and hold our children as they determine which of         $5.99; the foam brush even screws off so liquid
our wishes are meant to come true. Although I will always have a        soap can be put into the wand!! So - this is just one
glimmer of grief for the life I thought I was meant to have, I will     example of Equipment that Works ... differently
never trade my life for what’s behind curtain number two. My            than intended ... but oh-so affordable!! Buy
dreams have definitely changed, but new ones are coming true            several! n
thanks to my family and friends at FOCUS. n

                                 770-234-9111 • inquiry@focus-ga.org • www.focus-ga.org
Page 5                                             FOCUS                                        Volume 25, Number 4


  Coming Up ...                                      Looking Back ...
            Under the Stars:                                              Six Flags Day!
         A Family Fun Weekend                        The 5th annual FOCUS Six Flags Day was sunny and hot!
                                                     Families enjoyed a wonderful day of coasters and Looney Tunes,
  WANTED: FOCUS families will ride into              plus a delicious lunch at the Peachtree Pavilion. Thanks to the
  Camp Twin Lakes for the 10th annual Under          Forrest C. & Frances H. Lattner Foundation and Coca Cola for
  the Stars family weekend August 15 – 17.           sponsoring this event!
  The theme is “Wild, Wild West” and we plan
  to have a rip roarin’ good time!

                  9th Annual
         FOCUS on Fashion!
  Calling all models! This annual fashion show
  not only highlights the latest in clothing
  styles, it stars the most beautiful models
  in all of Atlanta! This event helps raise the
  awareness for FOCUS and highlights the
  beauty and gifts of all children. Call FOCUS
  if you would like more information about
  modeling in the show!


             Mom’s Day Off
            Stay tuned for more –
           working on the date now!

   4th Annual Extreme Home
        Modification Tour
             Saturday, September 13                             Paul Hastings Gives Back!
           Locations to be announced!
                                                     The law firm of Paul, Hastings, Janofsky & Walker sponsored
  Have you considered making changes to your         “Paul Hastings Gives Back,” a day of service to the community.
  home to allow your child with disabilities         The summer associates selected FOCUS as their project – and
  better access? Tour the homes of FOCUS             we put them to ‘work!’ On June 20, they treated our Medically
  families who have made changes (or built           Vulnerable People (medically fragile children and their families)
  entire houses!) to make their homes more           to Cinderella Della Circus and a puppet workshop at the Center
  accessible. To offer your home for the tour,       for Puppetry Arts AND our Teen Group to an afternoon of
  please call or email Angie at angie@focus-         bowling fun. We appreciate their time, energy and generosity!!
  ga.org. More about the tour in the next
  newsletter and at our website at
  www.focus-ga.org

              2nd Annual
           FOCUS Day at the
           Georgia Aquarium
            For FOCUS families only!
             Sunday, September 14
            Preregistration required!


                              770-234-9111 • inquiry@focus-ga.org • www.focus-ga.org
Page 6                                                        FOCUS                                              Volume 25, Number 4


                                                            Alyce
M      y name is Alyce Penniman. Alyce Frances Penniman. A
       reader. A writer. Definitely not a mathematician, though
I can hold my own in a math classroom. I will be a high school
                                                                      driving in the future. Not to mention the fact that I excel in
                                                                      literature and will major in English in college. It was not an
                                                                      easy road getting to this point.
graduate in the class of 2008 and a college graduate in the
class of 2012. Most importantly, I am a potent young woman            I’ve never been just about my disability. In fact, no one who
determined to make her mark in the world, regardless of the           truly knows me has ever been only about my disability. Does
fact that many odds are against me.                                   the fact that I have Cerebral Palsy define me, or does it add
                                                                      to who I am? I have been judged on both accounts numerous
I was diagnosed with Cerebral Palsy at fifteen months of              times, and although the judgments are painful, they ultimately
age. My parents and I embarked on a journey completely                help me understand what my disability is: an intrinsic piece
foreign to any of us. There was a time of sadness for all of          of me but not the sole entity of me. I am disabled person;
my loved ones; to not know the future of this very special            however I am more than that. In the past two years, I realized
child. Certainly I was not to be a ballerina or a track star, but     that I wanted to give back, and I decided that I would begin
in spite of the facts and their fears, they shifted their focus to    working with the special needs students at my high school
the possible, and when they did, so did I. I grew up very             through a club called Friends. Within a short period of time
loved and because of my disability, very sheltered, but I was         I realized that it was one of the best decisions I have ever
fiercely independent and entirely too frustrated with my body.        made. Working with other people who are more challenged
My frustration, coupled with positive energy and constant             than I am, even severe and profound students, has given me a
support from the caring people around me, fueled my desire            sense of awe and meaning of my being. Every person is given
and drive to become as much as I could. Many groups and               a body to experience life in, and no two bodies are the same.
professionals, including FOCUS, were key in helping me and            I have learned through my experiences of growing up with
my family find resources, answers, support and hope.                  “CP” that I can do whatever I want choose to do. I may not do
                                                                      it the same way as everyone else, but I can still do it, which is
I am now eighteen years old and I am partially paralyzed              an ultimate reward and purpose. My disability does not own
on my left side. I walk with a unique limp, I talk (some say          me, but I own it as a part of me. I can self actualize within
incessantly), I typed this article on a regular keyboard (with        my limitations in limitless ways, and I can do so much for so
my right hand), and I am actually pursuing the possibility of         many, as so many have done for me.


                                                                           disabilities or ongoing medical conditions.
                                                                           informational and physical support to families of children with
                                                                           FOCUS is a nonprofit organization that provides emotional,




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