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 • email@example.com • 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 • firstname.lastname@example.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 • email@example.com • 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 • firstname.lastname@example.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, PLEASE DELIVER PROMPTLY DATED MATERIAL RETURN SERVICE REQUESTED Permit No. 579 Decatur, GA Atlanta, Georgia 30340 PAID 3825 Presidential Parkway, Suite 103 U.S. Postage NON-PROFIT ORG.
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