"The day you say Cameron will never do something, he never will!"

Author: Becki Enck – Cameron's mom

This statement has driven all of our efforts for our
3 1/2 year old son, Cameron, since he was just 7 weeks old. Dr. Nishant Shah, Cameron's neurologist, told us this the evening he gave us the devastating news that Cameron had suffered extensive brain damage as a result of a suspected meningitis infection he had at 1 week of age. We were shocked to hear the news and repeatedly asked Dr. Shah if Cameron would ever learn to walk, talk, or play with his big sister Abby. Rather than tell us no, Dr. Shah told us "The day you say Cameron will never do something, he never will." Dr. Shah explained to us that if we enrolled Cameron in various therapies at such a young age then we could help to maximize the healthy areas of his brain to compensate for the damaged areas.

When Dr. Nishant Shah told us about Cameron's brain damage he never once minimized the severity of it, yet he gave us hope to think that Cameron could do things that others might say he could not. Dr. Shah told us to always believe Cameron could do something unless he shows us otherwise. It is sad to think that if we would have had a different neurologist delivering the test results what a different outcome we might have had with Cameron. The reason we know this is due to the fact that when Cameron initially got sick at 1 week of age, with suspected meningitis, and was ventilated and emergency transported to a Chicago area hospital, the initial evaluation by one of the neurologist there was not positive. He told my husband and me that Cameron had no brain functionality and we should have never allowed him to be placed on life support. This neurologist spent a total of 5 minutes with us, never asking us our names or Cameron's name. He delivered this devastating news with no care or compassion in the middle of a crowded NICU. We were devastated by the news and actually left Cameron's bedside to go home and prepare our families for this outcome. It was not until an attending physician called us to come back and spent hours with us observing Cameron that we regained our hope. As it turned out after finishing 14 days of antibiotics, Cameron was discharged and we were told he was perfect, no long term effects would come of his meningitis. As we learned a few weeks later that was not the case. Cameron had suffered extensive brain damage as a result of the infection he had contracted.

Cameron's brain damage showed up when he was 7 weeks of age and was admitted to Advocate Lutheran General Hospital in Park Ridge, Illinois as a result of suspicious seizure behavior. We are so thankful that Cameron was readmitted to Advocate Lutheran General Hospital and Dr. Nishant Shah was assigned as his neurologist because had we had the first neurologist we know the prognosis we would have been given would have been grim and we would not have gotten all of the therapy that we did for Cameron. Our family has learned first hand the impact a physician's diagnosis and prognosis can have on how a family cares for a child, and ultimately that child's future. Because we had hope from Dr. Shah we made sure to get the early intervention services that have made a huge difference in Cameron's life. We do understand that regardless of how much intervention a child gets that sometimes the outcome will not be as positive as Cameron's outcome. The key, however, is that every child deserves to be given every opportunity to be the best that they can be and that early intervention is designed to provide such opportunities to children.

One of the hardest moments that we have endured as a family through this journey was the realization that not everyone is accepting of differences. We learned this firsthand when a playgroup of moms told me that they would have never wanted to have a Cameron and went on to say so many hurtful things. My biggest fear when I first heard Cameron's diagnosis was that someday a child would make fun of him because of his differences. Never did I expect that a parent would make fun of him. I had a very hard time accepting such ignorance and for a while I chose to isolate our family from others out of a fear of being hurt again. Then at a conference we attended a wise man who has an adult son with autism told me "God did not make a mistake when he gave Cameron to you - he chose you and Tim to be Cameron's parents because he knew that you would walk through this journey with Cameron, hand in hand." What powerful words, and how incredibly honored we do feel to be Cam's parents.

Cameron has changed us -Abby, Tim and me, for the better. He stops us and makes us remember what is truly important in life. He has taught us to never give up when faced with an obstacle. He has made us laugh at times when I wanted to sit down and cry. And he has shown us the beauty of trusting others. Despite enduring so many difficult medical procedures, Cam absolutely trusts each member of his medical team. He calls them his friends and he claps when I tell him we are going to the doctor. Although he is only 3 1/2 years old he is so much wiser than his age. He recognizes that despite the pain that each procedure causes, the procedures will ultimately help him. With his smile and contagious laugh he wins over each and every person he meets. And he is able to make others stop and laugh.

The decision I made to share Cameron's Journey is a result of a 3 1/2 year long personal journey of finding my life's purpose out of one of the hardest, most painful, yet most personally rewarding and enriching experiences of my life. I have watched my child suffer through 12 spinal taps and numerous other painful medical procedures and yet still be willing to trust each and every medical professional he encounters. I have watched in awe as he has worked so hard to achieve each and every one of his milestones. And I have cried more times than I can count as I have heard his beautiful voice say “Hi Mommy”. I have learned that I can not control everything in our lives. Things will happen but how I react to the situations is what will matter. I was not able to prevent Cameron from contracting suspected meningitis and ultimately suffering from his brain damage. It took me a long time to admit that no matter how hard I try some things are out of my control. However there are many things I can control. I can choose each and every day to see all of the wonderful things that our son has brought into our lives and marvel at each of his accomplishments. I can live for the moment rather than worrying about the future. And I can hug Cam and tell him I love him with all of my heart. And I can thank God everyday that he chose me to be Abby and Cam's mom!!!!

To learn more about Cameron's story, our family, his medical team and the projects we are working on to raise awareness in the medical community as well as the community we live in, please visit www.cameronsjourney.com. There is also a link to a 9 minute video montage that I made that shows Cameron's journey over the past 3 1/2 years.

Written by Becki Enck – Cameron's mom
We Chose HOPE!