Written by, Pamela Clark
I don’t remember an earthshaking feeling with the diagnosis on our sweet boy. Instead, I vaguely remember his orthopedic surgeon telling us once when he was two or three years old that he had Cerebral Palsy with right sided hemiplegia. I remember thinking, “oh that’s what it’s called, I’ll have to remember that when people ask me.” It wasn’t something that defined him — just a way to explain his condition to those who asked.
However, I will never forget the day they told us about his brain hemorrhage. It was the same day they told us he would not make it and if he did he would have no quality of life, and would be a major inconvenience to our family. And on that same day they encouraged us and even pressured us to make the decision to take him off the ventilator. From that day on, we never expected much from him. Instead we gave him everything we had, increased our faith, and fought to gain hope as well as an eternal perspective.
On December 21, 2003, at 27 weeks, Stephen (named Bindy by his brother Carter) was the first born of four babies, weighing 2 lbs. 4 oz. Next, Abigail at 2 lbs., Carter at 1 lb. 15 oz. and Dillon 1 lb. 12 oz. All of the babies had a lot of problems, but we could not have been more thrilled to have our new family!
Bindy started with so little possibilities. Because of the hemorrhage, he developed hydrocephalus, requiring a shunt to divert his cerebral spinal fluid (CSF) off of his brain to keep it from accumulating and causing pressure that’s life threatening. We were constantly amazed and proud of every tiny milestone he made.
In my early twenties I worked at Primary Children’s Hospital in the Emergency Department. Ironically, I remember telling my mom, “Give me anything but a kid with a shunt. Shunts terrify me and I feel so sorry for those families who have to deal with them.”
Shunts are unpredictable. That’s what terrified me the most. I’ve always been a planner, a list maker, and never liked to be surprised. Prior to Bindy getting his first shunt, I had a conversation with Dr. Walker, the head Neurosurgeon, and asked him if there would be any possible way to avoid a shunt. He explained that they had been using an exterior ventricular drain and if the hydrocephalus could self-resolve and drain on its own, he might not need one. As it turned out his production of CSF was more than his body could naturally drain and absorb. The need for a shunt was unavoidable. As I had nervously anticipated, the shunt and the many thereafter have given us quite a wild ride.
What I would gain from being the caregiver/mother of a sweet angel boy with a shunt would be the very thing I needed in my life. I have benefited in unimaginable ways from the accelerated course I’ve been on learning empathy, compassion, forgiveness, faith, hope and absolute pure, unconditional love. Not only have I been blessed to learn these lessons, there are others in our lives who have shared our journey — they too have been blessed greatly. His sister, Abby, and brothers, Dillon and Carter, love him with all of their hearts. They’ve always felt he’s an extension of them being multiples and have also learned to put their own wants and needs aside as they help their brother.
As a family, we’re dedicated to a life of service to our angel boy, as long as we’re allowed. He is completely perfect and has taught us to be more like him. Our commitment to him has only increased through the years of many surgeries and complications.
On August 28, 2013, we were told by the neurosurgeons after six shunt revisions within a four month period that we had run out of options. Currently he is left with only high risk, exotic shunt placements, including where it is now with the shunt in the plural area in his chest. His little body is so scarred up, it is unable to absorb the CSF any longer.
Our commitment to our angel boy continues, however the course and goals have changed. Instead of focusing on rehab and pushing him to do more, we have started to focus on making him comfortable and happy. Making memories and preserving them through pictures and videos.
I’m honored to have been chosen to stand by my sweet angels’ side through this life and we’ll miss him dearly when he’s gone. I cherish every moment we have with him and gladly continue to serve. There was never a time I said, “why us?” Of course, there were times we’ve prayed for a break—nobody deserves to watch a child suffer. But, we’re always grateful to have Bindy. He is a huge part of our family.
Thank you Pamela for sharing your inspirational story.