Fall 2012 - Issue 2 - Featured Article
A Mother's Story:
Down Syndrome Gives Family a Chance to Bloom
Written by: Michelle Arean
No parent wants to see their child hurt. No parent wants to see their just born child with a disability. Every parent wants their child to be perfectly healthy. Yet, the unexpected happens. Life throws you a curve-ball. You can be devastated, but just for a little bit, because life - it goes on, whether you’re on board or not.
Kelle Hampton is the mother of two little girls, five-year old Lainey and two and a half-year old Nella. She is also the author of Bloom, a book based on her experience. When Nella was born, Hampton immediately noticed something was different, her nose seemed squished, and she was concerned.
“My world collapsed as I held my new daughter, moments that should’ve been sealed with joys and tears and elated happy birthdays. I was numb. I was grieving the loss of the child I had expected while the child I welcomed looked into my eyes and begged me to love her. That was my defining moment,” said Hampton in the Bloom trailer.
She asked everyone around if something was wrong, but everyone just said Nella was perfect. Her fear was confirmed when Nella’s pediatrician said what Hampton suspected, Nella had signs of Down Syndrome.
“I was in shock. I cried later that night. I remember telling everyone in the room I knew she had Down Syndrome the minute she was born but when it was confirmed I just sat there. I cried different waves; angry waves came in my mind. I cried for seven hours straight the night she was born. Grieving the baby I expected, which shows I didn’t know anything about Down Syndrome,” said Hampton.
She shared the information with her father and close friends who were waiting in the hall.
“I just blurted it out and said, ‘I need you guys to tell people,’ because I didn’t want to do it,” she added.
Friends and family were supportive. Flowers and balloons were sent; they barged in the door to be the next to hold her. They acted as they would for any new baby.
“Every single one of our friends and family never forgot that a baby was to be celebrated,” said Hampton.
“The unexpected in our life was really an opportunity,” she said.
Kelle and Brett, her husband, decided to take things one day at a time from the start. She took the role of researching and scheduling doctors appointments, while Brett was supportive, never allowing the diagnosis take stage.
“Whenever anyone had a moment of weakness, it was naturally orchestrated that we never had one at the same time,” added Hampton.
After turning a tough situation into a positive and going through the grieving process, Hampton understands how difficult it can be for parents.
“When you feel that, ‘oh my God is this really happening’ feeling, let it come. Have your moment of crying,” she said. “The biggest thing for me was to focus on the present. What do you have right now. I have my two kids who are playing on the floor, I have a cup of coffee in my hand, we live in Florida, all these little pleasures that will never go away,” said Hampton.
Then when the tough days come, accept them and lean on those around you.
“I ask for help. When I’m feeling sad I’ll break down to a girl friend. Get it out and listen to people build me back up,” she said.
Her toughest times have mostly been the emotional roadblocks and understanding that life has been different than what she expected.
“My most recent hardship, to have her want things in life and say, ‘baby you can’t have that, you have limitations’,” she said.
However, there have been rewarding moments.
“I never would have expected how much I would grow and how much I would love this child and what she has brought to our family; the joy has been the most rewarding experience,” said Hampton. “The compassion that has come from the community; hearing from moms who have gone through this, that the book has helped them or that reading the birth post saved them. It’s incredible.”
Hampton, who also has two stepsons, describes her family like any typical family with four kids.
Typical family with four kids. “The boys are very doting, if we can’t find the girls they’re probably playing video games with the boys,” she said .
At first, Hampton admits to grieving for the sister relationship she thought Lainey would never have. The two girls have grown to have a beautiful sister relationship.
“It’s exactly how I dreamed - constantly giggling,” said Hampton.
Hampton doesn’t see a difference in raising a child with special needs and a typically developing one. The difference she sees is Nella getting therapy and having people come to the house every week to work with her. The therapists have involved Lainey in the process. Hampton says that during therapy there are usually three of them on the floor - the therapist, Lainey and Nella.
“I look for opportunities where they can do something together. I tell Lainey that a lot of what Nella knows is because she’s her teacher. I’ll give her flashcards, which give me the opportunity to teach her,” said Hampton. “It’s made me as a parent more aware of the opportunities to teach our children to be compassionate.”
Lainey has been taught about Down Syndrome, but it hasn’t been made a focus. It was better explained when the family participated in the Buddy Walk. Hampton used this opportunity to explain to Lainey why everyone was running to Nella and what it meant. She also recalled a day when at dinner they saw a child who appeared to have autism. When they got home she explained what was happening and why the boy was making different sounds. She explained that that’s what made him unique, just like a little girl with a hearing aide or someone in a wheelchair.
“I explained that some kids won’t walk and talk like her,” said Hampton.
Finding help while navigating the new diagnosis came easy for Hampton. She reached out to the organizations provided while she was at the hospital and the next day they were being setup for evaluations. The early Steps Program has helped her along the way.
Nella currently receives physical and occupational therapy once a week and infant and toddler development every two weeks. They work on cognitive play activities, and some speech therapy. Hampton describes Nella as a spitfire; she’s running, she’s mobile, she rides the scooter, climbs on everything, and she’s speaking very well.
She also suggests finding people in the community with Down Syndrome. Other families who have been through it can provide you with knowledge and support.
She is giving this support back through her writing. When Lainey was seven months old, Hampton started a blog as a hobby. It gave her an outlet to combine her writing and photography and provided communication with family in the Midwest. After Nella’s birth, Hampton shared her experience and it quickly went viral.
Hampton’s experience has been turned into a book, Bloom, which is currently a best-seller.
“I wrote it first for me. Writing has always been therapy. It has been the most cathartic experience of my life. I wrote it for my children. I wrote it for other people who might go through this,” said Hampton. “A huge part of why I wrote it was for people who don’t go through this. I want them to relate to what it would be like. I want them to feel the emotion of love and expectations we have for our children.”