Allie's school sent her home with this walker the other day.
The Arc mixed in all the essential ingredients for a perfect Thanksgiving celebration on Tuesday. Family, friends, puppets, and a tasty buffet of food filled every flat surface.
The Kids on the Block puppet show drew a crowd that arranged itself in a semi-circle around a small stage. Forty or fifty of children in wheelchairs and customized walkers, along with their care givers and parents clapped and cheered as performers entertained. The life-sized puppets portray characters just like the children in the audience; they have one-of-a-kind personalities and unique life stories. Some are handicapped, others affected by divorce, and some victims of abuse. And they know how to have fun and get the people around them involved. The excitement was contagious. Children weren't the only ones sporting huge grins. Grown-ups laughed out loud and beamed as they watched their kids join in the fun.
Moms and dads, uncles and grandmas sat together with their kids, connected with old friends and made new ones around a feast of deviled eggs, cranberry sauce, stuffing, and turkey. Gravy pooled in mashed potatoes and green bean casserole was devoured by children who never imagined veggies tasting so good. Blessings were counted and thanks given as care givers and generous benefactors circulated among children and parents extending a warm welcome.
After the meal, children were allowed to pick a gift from a table piled high with toys. The Arc's mission is to improve life for special needs children and adults through education and advocacy. The Thanksgiving event fulfilled the mission with style and pizzazz.
I went to a dynamite talk today given by Michelle Poole, cofounder of the National Shaken Baby Coalition.
I walked into the multi-purpose room at The Arc School (Allie's school and the host of the event) and was knocked a little off balance. There were about twenty-five women in the room and I was the only dude. That's a great ration if I was on the dating circuit, but not necessarily cool for an event like this.
Poole launched into her presentation and the room filled mostly with caregivers was spellbound. And I don't think there was a dry eye in the place. The only thing that kept me holding it together was the knowledge that I was the only male in the room.
Below is her testimony.
On November 21, 1994, I heard those exact words. My 3-month-old baby granddaughter, Gabriela, sustained a traumatic brain injury as a result of being shaken. I can only describe that moment as numbing. This event changed my life and the life of our entire family. That fateful day, my son George admitted in a moment of anger and frustration that he shook his infant daughter as he cared for her and her twin sister while their mom was at a part-time job. Gabbi was shaken on a Saturday. George and his wife, fearful of what was happening, waited until Monday to take her in for help. When I went to the hospital, I had no idea what had happened or the extent of her injuries. When I saw Gabbi in the Pediatric Intensive Care Unit, I did not need anyone to tell me she was close to dying; I could see that through the tears in my eyes.
That night my family began the shaken baby syndrome journey.
I thought I had told him everything there was to know about caring for an infant. I never told him not to shake her. It never crossed my mind that anyone would shake a baby or that shaking a baby would cause a fatal or near fatal injury. That is the hidden problem of shaken baby syndrome (SBS). No one ever thinks to tell a parent or child care provider the dangers of shaking a baby in a moment of frustration.
Why would you need to tell them that? They certainly know that would harm a baby--or do they? Did you know?
That first year was surreal. My 24-year-old son was going to jail for 5 years. I was now at the ripe age of 44 raising two infant girls that I loved. I wanted to love them as a grandmother not their mother. I wanted to spoil them and let them get away with things their parents wouldn't let them do. I wanted them to go home at the end of the day or after a weekend from Nanas. Instead, I was going to court for custody hearings and case plans while Department of Children and Families of Florida was monitoring the care of the girls at our home.
This journey was no family picnic.
The first five years of Gabbi's life were immensely difficult. I had no experience dealing with a child overcome with such severe medical needs; one who was unable to communicate even the slightest life-sustaining need without crying or screaming. I was now caring for a child with seizures, tube feedings, endless diaper changes, multiple doctor visits and late night emergency room trips. I had to learn a new vocabulary filled with medical terms and diagnoses. I felt as if I was adrift at sea. This was a very strange feeling.
I have always been in control of my life, and now I wasn't. It was time to take charge once again.
We finalized adoption of the girls in 1996. George was in jail. The twin’s mother understood that the children were better off with me, but we still wanted her to have a role in their lives. She was their biological mother and they needed to know each other. She has since moved away to start a new life and is doing very well. She calls to see how the girls are doing and speaks with little Michele.
With the adoption complete, we began the journey of a SBS victim family. I was ready to get started.
I heard about a conference in Utah on shaken baby syndrome. So in September 1998, I attended my first conference on SBS. What an enlightening, but heart-aching experience it was. I learned all about SBS, what people were doing to prevent it, how the legal system works and when to investigate and prosecute perpetrators. I was learning what all the medical terms meant. I was also learning that there were far too many SBS cases each year and more awareness was needed. I learned that there were many families, just like me, wanting to learn more about SBS. In a very special family gathering arranged by the conference staff, we were all able to share our stories and mourn each other’s pain.
I saw children there who looked and functioned just like my Gabbi. Isn't that strange, we don't say, how our children behave, we say, how they function. Then there are the families of children who did not survive.
Their pain is intense.
I left Utah with the strangest of feelings. I knew I could go home and start an awareness effort in my area--that was easy. What wasn’t easy and what haunts me today is the pain of all the families and the helplessness we all share.
I went home armed with so much information. I created a presentation, and off I went. I started contacting schools in my area, dropping off literature and asking to talk to their students. I went to daycare centers and dropped off SBS information. I visited drug rehab centers and spoke to their clients. I contacted women’s shelters, and other like-minded agencies in the area to give them literature and to request to speak at one of their events. I would talk to anyone if they stood still long enough. Some families don’t feel comfortable when people look at their child with that wondering glance.
For me it is an opportunity to spread the word to Never Shake a Baby.
I had looked for SBS web sites prior to going to Utah. There were some, but I didn't get a lot of information at the time. The information that The National Center on Shaken Baby Syndrome (NCSBS) has is wonderful and provides the most accurate accounting there is to date on SBS. There are now many SBS family sites dedicated in honor of a child’s memory or life struggle. More and more sites about infants contain information regarding the dangers of shaking a baby. The Internet has provided great opportunities for continuing access to information on SBS.
Families and professionals are taking charge and providing awareness programs all over the country. In addition to Utah, the NCSBS has held conferences in Australia, Scotland and Canada. SBS is not something that only happens in the United States. Many of these groups have worked to pass legislation for mandatory education in hospitals. Many have passed laws to stiffen punishment for perpetrators.
Many have spoken on television or in print sharing their own Shaken Baby Journey. There is still much to do.
Our family is now in its 10th year of Our Journey. The twins are 10 years old. Little Michele is entering the fourth grade with glowing grades and a very positive look on life. She is the star on their basketball team. Hilary Duff is her idol. Michele loves her sister and helps with her care.
When she runs for her track team she says she is running because Gabbi can't.
Gabbi attends a charter school in Palm Beach that provides all her therapies as well as education. Gabbi only functions as a 5-month-old but her school has provided ways for her to actually communicate some of her needs and wants. Gabbi knows that she does not like a wet diaper, so they put her on the potty every hour. For additional bathroom visits, Gabbi makes the sign for potty, most of the time after she wets--but hey, we are making progress. She has seizures, sometimes as many as 15 a day. We have tried diets along with medicines and have been successful, but her body changes and we need to find new ones. We are currently using a medicine that we can only get from Europe. Amazing enough we have gone from 15 seizures a day, to 2, 1 or none. Gabbi has had multiple hip surgeries, which I think take more out of me than her. She goes with me to visit middle schools, high schools, parenting classes, drug recovery programs, jails, child abuse prevention seminars, church groups, police, nurses, child protection workers and guardian ad litem groups. You name a group and we go. Gabbi has even been to Tallahassee and Washington D.C.
Her appearance says more than any words I can say.
My son was released from jail five years after Gabbi was shaken. I not only lost my grandmother role, I lost my only son. With the circumstances as they are, a relationship with him is impossible. I have to admit that I get very frustrated with families defending their sons who've shaken their child. This makes the life of the mom nearly unbearable. If a daycare provider had shaken his or her child, everyone would want revenge. If it is the father, they make excuses and even try to blame the mother. Then there are doctors who make careers out of consistently testifying for the defense. They spread the misconception that there is no such thing as SBS. If that myth continues we will still have infants with their brains being blown apart for no reason at all.
Somehow, we have lost sight of the victim.
Many ask me, “How do you do what you do?” I hear, “You are so strong”, and “They are so lucky to have you”. I respond by saying, I use the 12 steps of AA; I have no addiction problem, but I have found this programs structure gives me the strength to carry on. I believe very much in God and His love for me. I really am not that strong. There are many times I allow myself to picture Michele and Gabbi playing as twin sisters, when I do--I weep. On birthdays and Christmas it takes all the strength I can find not to spoil the day for Michele. Luckily, I am the lucky one. All it takes is little Michele’s smiles, hugs or just calling me Mom, and I know I am the lucky one.
Every time Gabbi clears another hurdle in her life and proves the doctors wrong, I know that I am the lucky one.
The SBS Journey can be compared to the lives of families who have lost their children because of drunk drivers, child abductors, SIDS, and even accidental drowning. The difference--the perpetrators are relatives or care providers, the ones who love and care for the child with all their heart and would never intentionally injure them. But in 10 seconds of frustration, the consequence is the same death or permanent injury.
Our journey continues. We still continue to cross paths with many who are just starting the journey or have been traveling with us for a very long time. We try hard to continue to spread the word. Some people will tell you to make sure your seat belt is buckled, to put your child in the back seat away from the air bag, to wear a helmet when biking or skating, to never let your child sleep on its tummy for the first year, never leave your child unattended at a swimming pool and to stay away from strangers. SBS victim families will tell you, NEVER, EVER, SHAKE A BABY!
Michele Poole Grandmother and Adopted Mom to twins Michele & Gabriela Poole Born 9/4/94, Shaken 11/19/94
Michele served on the National Center on Shaken Baby Syndrome Governing Board for five years and was Board Chair from 2006 to 2008. During her time on the board she was chairperson of the strategic planning committee and fundraising committee. Michele established the National Center on Shaken Baby Syndrome annual giving campaign and has worked diligently to raise funds and support policy. Michele also is was a founding member of the Shaken Baby Coalition www.shakenbabycoalition.org and served as President. Michele was Chair of the Family Reception event at the 2006 and 2004 North American Conferences on Shaken Baby Syndrome and has been instrumental in raising funds and establishing scholarships for SBS victim family members to attend the conferences.
Allie initiates this poor pup into the Mondok household by trying to pierce his ear. Sounds cruel, I know, but they clip the ears of dobermans and boxers and pitbulls all the time.
So what's the problem?
Here is Allie with her very extroverted friend and a hippo. They are obviously enjoying each other's company.
I was just telling a friend today how much we are all learning and growing thanks to Allie attending school.