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Bryan's Story
"Bryan Keith was born on May 12th 1980..."
Bryan was born 2 months premature and was diagnosed with CMV. Due to the severity of his disabilities, we felt extremely fortunate to have had Bryan in our lives for 23 years. His story is unique and rare which exemplifies the strong character he bravely demonstrated each day, which I am privileged to share with you.
Bryan spent the first two months in NICU clinging to life on a daily basis. Even though he was a medically fragile baby, he exuded incredible energy that drew people to him. In fact, the nursing staff use to fight over who got to have him on their shift. But because he was a fragile baby, the staff took precautions due to infectious reasons and had him in a private room, spoiling him as often as they could; making him water beds out of baggies for him to lie on, and celebrating his 1 month birthday.
During those two months, Buck Buck had a lot of ups-and-downs, and some pretty close calls, but he was here to stay, as he came into this world for a reason. His body was so fragile that he encountered two broken legs from the daily care needed just to keep him alive. No matter how much everyone tried to help him get well, he was not improving. The only option was to operate and explore; but given he weighed 4 lbs at 2 months, the doctors did not feel that he would survive the surgery, so he was sent home with us.
We did not give up on our son and went back to the hospital 5 to 6 times before it was determined that bowel complications required life-saving surgery to remove 1 1/2 inches of his intestine. Remember, we are talking about a baby that only weighed 4 lbs.
We were so thankful to bring our son home and we relished in our special moments. While most babies are able to sit up at the age of 6 months or more, Bryan's weak muscle tone required a supportive harness. As he sat slightly reclined, his head motioned in small circles and rubbed the back of the seat, fluffing his hair upward. In loving adoration, he reminded his father and I of Buckwheat; hence the nickname, Buck Buck.
The next few years came as normal as having a medically fragile child could be. Bryan was involved with special schools, Shriners, Doernbecher, physical therapy; all the help that was available, we did. He loved going to school everyday on the bus, and his teachers, just like his nurses, all wanted to have him in their class. His family and I celebrated immensely at his accomplishment of graduating from High School.
Everyday he inspired and changed people's lives just by being who he was. He was pure love, on a mission in a broken, painful body. Buck Buck was blessed with the strength to endure and he was a very happy child with strong character, always smiling and laughing. Rarely would you see, what I called alligator tears, roll down his checks in silence when the pain was unbearable. He had a special love and gentle touch for his family and friends, and treated everyone with kindness. Buck Buck made you feel good just to be in his presence. He achieved so much in life without ever speaking a word.
As the years went on they got more and more difficult with his failing health, and never knowing from day-to-day how long I was going to have him. CMV continued to take its toll on Buck Buck. He encountered over 18 severe medical conditions, underwent numerous surgeries and was wheelchair dependent the last 8 years of his life. During the last 10 years, his health declined and he became extremely fragile. He required more help and care than I could give him at home as a single mother, so I was left with no other alternative than to find a medically fragile care home for special children with 24 hour nursing care.
Over the years we struggled a lot and reached out and found all of the support we could. Some support came easy, but much of it came with a battle. This is why I have created the Buck Buck Foundation. Even though Bryan has been gone since September 11th 2003, the memories of what we went through still feel like it was just yesterday. I know from a mother's heart what many other children and families are going through. It is my passion to help families have what they need to care for their medically fragile children, so they can further enjoy the time that they have with their angel on earth.
I make it all sound somewhat normal to raise a medically fragile child, but that is who I am. I was given a very difficult task, but there was no question of doing it or not. He was an angel on earth and I was blessed to have him. Buck Buck's story is a mixture of his experience combined with mine as his mother. Mothers understand their children, even when they are not able to speak, and they often become the voice for their child. I had the honor to be Buck Buck's voice for 23 years. I will continue that privilege in the present, and the future, in the loving memory and honor of my son; my angel.
- Shared by his mother, Dar