The Bungarden family: Lisa holding Adam and Rich holding Rachel
Serenity and Courage: Living the Prayer
"Rachel was diagnosed with microcephaly at birth, and a 7q35 deletion when she was ten days old. She has sacral agenesis (her sacrum and lowest three vertebrae are missing), and aortic valve insufficiency, a neurogenic bladder, tethered spinal cord (repaired surgically), bilateral grade 5 kidney reflux (repaired surgically)," explains her mom, Lisa.
As is often the case, the Bungarden family was given their daughter's diagnosis along with a huge dose of pessimism regarding her prognosis. They were told that Rachel would be "lucky" to if she had an IQ of 10, and that she would never walk. Lisa was numb.
"I didn't eat, I didn't sleep, I couldn't concentrate. Life seemed like it was ending, but every day I still kept waking up. My blood pressure was so high the doctors were really worried about my health," she says.
Life went on, and Lisa continued to feel the stress. "I found myself very socially isolated the first couple of years of Rachel's life. I felt like no one could really understand me. I found it very hard to be around my friends who were all having typical, healthy babies." She says she feels that the constant worry robbed her of her daughter's first year of life.
Gradually, she came to a different understanding of how to live with the diagnosis. "Initially, I did a lot of research. I read everything I could get my hands on. I soon realized that Rachel is unique and a lot of the information I found is either outdated or a case study on ONE person."
She goes on, "I have learned the most about my daughter's diagnosis from her. I also learned a lot from other parents who have children with special needs. Online support groups have been invaluable to me."
Her biggest support comes from her husband and her mother. "I am blessed with a wonderful husband who is really my true life partner. He and I truly share the responsibility of raising our children, and he is so understanding and supportive when it comes to Rachel, even though at times we deal with things in different ways."
"My mom has also been a true blessing. She has moved with us twice (we are a military family) in order to help me and be closer to her grandchildren. She and Rachel have a very special bond."
"Life isn't what I expected it to be. As a child I dreamed of being a mommy and those dreams never included a child with special needs. I dreamed of my children growing up and filling my home with laughter and joy. I dreamed of having a daughter and teaching her to love some of the same things I love...cooking, scrapbooking, the beach, books, photography..."
She's discovered that while her childhood dream didn't include disability, it is being lived despite it.
"Our house is filled with laughter and joy. Rachel has the strongest spirit I have ever known. She has a wonderful disposition and sense of humor. She has a priceless giggle and a smile that can light up a room. She loves to "cook" in her pretend kitchen and walks around wearing my cooking mitts on her hands. She loves the sand, the water and swimming. She loves being read to and looking at pictures, and always has a smile on her face when she sees a camera."
She says that on her difficult days she turns to her cyperspace friends for comfort and advice. Knowing she's not alone is very important to her.
"I've learned to remind myself that there are some things I can't change. I can't change that her bladder doesn't work or that she's globally delayed. I do have control over how much attention, love and affection she receives. I can play with her and make sure that her days are filled with laughter. I can try my very hardest to be patient and understanding and make her days on earth the happiest they can be!"
