I volunteer on a parents council for our local children’s hospital and a little while ago, during a brief tour of some new outpatient facilities, I met two young men. Over the course of the two hours I had the opportunity to observe these boys and that was it, I had to share a piece of what I saw that day. Through the local support groups I was able to track down their mother, Jodi, and first, compliment her on what an amazing job she must be doing with her boys! Then second, ask her if I can share a little bit about them here.
What did I see that I had to share?
I almost can’t even capture it here, you almost just need to see them in action, but I am going to try. The younger brother, Jacob is 14 and confined to a wheelchair. He has the diagnosis of cystic fibrosis as well as Cerebral Palsy. It is clear that physically he is very challenged but other than that, Jacob sounded to me to be an otherwise very typical, funny, excited, 14 year old boy. His brother Brendon is 16 and just got his driver’s license (he even pulled out his wallet to prove it!).
What is so special about these brothers that gives me my signature “cry eyes” when I think about it? They absolutely, 100%, exuded love for each other. Brendon was as nurturing as a parent typically is to their child to his younger brother.
I saw it from the start. When they wheeled up, Jacob was given a hard hat to put on, that he couldn’t put on himself. It was then very awkwardly placed on his head, Brendon came around in front of him and gave a tisk at how it was kind of hanging off to one side and adjusted it so it would be comfortable. Throughout the entire tour Brendon was steering Jacob’s electric wheelchair for him. Expertly guiding, navigating and turning him through the building that was very much under still under construction. I could tell that this was something Jacob could likely do himself but not without a bit of a challenge. Brendon relieved that burden.
After the tour we met in the board room for a brief question and answer session and I am not sure if Brendon helped Jacob taste a cookie but when I looked to them Brendon was gently wiping Jacob’s mouth and sweeping crumbs from his shirt. During the meeting Jacob’s head would slowly fall to the left and Brendon would gently prop it back up straight again while Jacob smiled. I could tell it got to be a bit of a game when Brendon held it up with one finger that he kept in place and then looked around trying to jokingly look normal. They both giggled about it.
I am assured by his mother that they do indeed fight, I have four boys of my own so I guess I don’t doubt it even though I didn’t see anything of the sort on this day! I asked her for more information on each of them and this is some of what she gave me.
Brendon is a fun kid who has always loved his brother completely. When they brought Jacob home, he filled his car seat with all of his toys. When Brendon was 5 he asked his mom “if you die, how will I go to school, work and take care of Jacob full time?” Brendon was trying to figure out how to care for a Jacob full time and he was only in Kindergarten! He loves to cook. He is a master at it, and that is his dream job, to be a chef. He will be in a class at school that will allow him to get college credit and enter cooking contests, that if he wins at a local level, he could go on to national. He is a great dutch oven chef as well. Along with his love of cooking, he also plays the violin and I hear he is very talented.
Jacob is a great boy and aside from his apparent physical challenges is very much a typical boy with typical dreams. He always has a smile, unless arguing with his brother, and brings so much joy to those around him. Jacob has wanted to make his voice heard. He has testified in front of the legislators for a few years now. He is on the Department of Human Services System of Care meeting, which consists of the directors of the Division of Service for People with Disabilities, Department of Human Service and others and sits on other committees as well. Jacob loves to write books and has written 3 so far, one is 17 shorter chapters. He would like to be a game designer for games on the web.
Brendon and Jacob, both sit on the Youth Advisory Council at a the local children’s hospital Primary Children’s which is how I came to meet them.
I am not the only one that noticed this love between these brothers. After asking their mother for more information she mentioned that a local news corresponder wanted to do a story on Jacob and give him a sports related wish but after she met them she knew the love these two had for each other was a great story. The news report can be found here. (Grab a tissue and meet these boys!) There is also a recording of Jacob’s testimony in front of the Utah State Legislature Social Services Appropriations Subcommittee that you can hear here.
I loved watching these boys together and cannot wait to see them in person again. I look forward to watching my boys grow up with Dylan and now, thanks to Brendon, there is a bar that is set pretty high!
Have you seen special siblings in action? I would love to hear your sibling story.