PeekabooNWA

The Story of Bentley Bella

Posted on 29. Mar, 2009 by admin in Personal Stories

April 9, 2004 started out just as we had always hoped it would. Our perfect little girl, Bentley Bella, the daughter we had waited 10 years to have, arrived. Bentley was absolutely the most beautiful child we had ever seen. After her birth, the nurse immediately took Bentley to the nursery for what we believed was “routine checking.”

The next thing I remember is the doctor coming into our room, drawing the mini blinds and asking all visitors to leave the room. The doctor informed my husband and I that our precious little angel had Down syndrome. We were told that 1 in 733 children in the US are born with this chromosomal condition and that it was nothing that either one of us had caused. He stressed that it was NOT hereditary, but that it was genetic and that our daughter would most likely be able to do everything a typical child could do, just possibly at a slower pace. Then we were given the biggest shock of all: some children born with Down syndrome have a heart defect. Testing proved that Bentley was one of those children. From that moment on, we completely forgot all about her Down syndrome diagnosis and focused all our attention on finding treatment for Bentley’s heart condition: AV Canal defect. Questions like “where is the best hospital”, “who is the best surgeon” and many others flooded our hearts and minds.

Thankfully, Dr. Franklin, the hospital neonatologist, told us about Arkansas Children’s Hospital in Little Rock. The ACH heart unit is ranked in the top 5 hospitals for best heart units in the United States. As we tried to absorb all of this information, we were scared and confused. I specifically remember asking God on numerous occasions, “Why are you doing this to her? Why? It’s not fair, God! Do it to me!” I wanted more than anything for someone to tell me there had been some kind of mistake. I would have done anything for someone, anyone to tell me Bentley’s heart echo had been wrong.

Three months later, my husband and I sat in the Arkansas Children’s Hospital surgical recovery room waiting on the surgeon to enter with news on how our little girl was doing. He entered the room and gave us the news we had been praying for. All went well with the heart surgery and we would be able to see our little angel shortly. Then the tear flood gates opened. These were tears of happiness. After many ups and downs we returned home and focused on getting our lives back to normal. We joined a local Down syndrome support group called Down Syndrome Connection of Northwest Arkansas (www.dscnwa.org). This wonderful support group consists of 70 positive/active families that have been a tremendous blessing to my family and many other families.

Today Bentley Bella is almost 5 and I can’t imagine how our life would have been if she would have been born a “typical” child. Down syndrome has changed our lives in a way that is very hard for many people to understand. The initial thing people said when she was born, and still say, when we tell them our daughter has Down syndrome, is “Oh, I’m so sorry”. As crazy as it may sound to someone who has not been blessed with having a person with special needs in their life, I often say ‘don’t feel sorry for me, I am one of the lucky ones.’ My daughter has opened my eyes and the eyes of everyone around us to be thankful for life and not take anything for granted. Not only does our daughter teach us how to be better people, but to make the most of everyday. The past 5 years have flown by and we are happily gearing up for kindergarten in a few short months. Bentley Bella is much like other children her age. With the exception of physical, occupational and speech therapy and her daily medications, Bentley enjoys many of the things “typical” children enjoy such as playing with babies, playing outside and playing with classmates. The next time you see a person with “special needs” don’t stare at them, but see them as you do everyone else. Our dreams for our daughter are like the dreams many other parents have for their children: We want her to be a contributing member of society and to be happy and live a fulfilling life. The community has so much to gain from people with special needs if they just open their eyes to the wonderful individuals around them. It is important to remember that people with Down syndrome, children like my Bentley, are more like typical people than they are different. Each child, typical or with special needs, should be enjoyed – just as they are – each special in their own way!

For more information on Down syndrome please visit www.ndss.org or www.ndsccenter.org.

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