Emma "Jake Was Our Hero"
Photo by Randy Bacon
Jake lit up the room with his captivating smile, while his laugh radiated pure happiness wherever he went. He was one of a kind, to know Jake was to love Jake. He was my best friend and my most treasured blessing.
In 2006, my mom was 28 weeks pregnant when they got the news that my little brother was going to be born with brain abnormalities, but they were unaware of his official diagnosis and deficits. On January 23rd, 2007 Jake was born with a cleft lip, a partial cleft palate, and an enlarged ventricle in his brain. That is all they were aware of at the time. He spent one-week total in the NICU before being able to go home. Jake’s doctors did not think he would survive past his first year of life, it was a very scary time for my family. Jake would never walk, he was non-verbal, and he was also blind. At ten weeks old they placed a J tube because Jake was unable to eat and gain weight from a bottle. Jake would receive tube feeding for the rest of his life. At 3 months old Jake was diagnosed with Holoprosencephaly (HPE), this is where the forebrain of the embryo fails to develop into two hemispheres.
Photo by Randy Bacon
The first two years of Jakes life were two of the hardest years my family has ever had to go through, they were rough. Jake was in pain and it was very apparent, which left all our hearts broken for him. He cried nonstop for the first two years as my parents worked with different doctors to try and figure out a plan and proper medication. One of the few memories I have of this time consisted of us all taking turns rocking Jake in the bathroom with the fan on full blast and the bathtub running because those were two of the only sounds that could sooth him and calm him down even just for a second. My Grandma Donna put her whole life on hold and moved in with us to help my parents with whatever she could. Her love for Jake and her support during this time really made a dramatic difference in our lives and I could never thank her enough for her selfless decision to be there for not only Jake, but my whole family. My Parents continued working through all of this, I stayed busy with sports, school and the support of my friends and their families.
My family had such an amazing support system throughout Jake’s life and I really didn’t understand the importance of this until later in life. Without the support of so many a much larger strain would have been put onto our family. When Jake was two, he started receiving in-home nursing care. My mom remembers Jakes first nurse Felicity, walking through the door and saying “give me him and go get some rest,” I think that is when we all realized our lives were about to experience a huge change and we embraced it with open arms. In the next six years of Jake’s life those nurses became our family. They loved Jake like they would their own children, they became second mothers to me, and they taught me the importance of compassion, and kindness. I believe their love for Jake was what really pushed me to want to work with children when I grew up.
Photo by Randy Bacon
Growing up with a brother with special needs forced me to mature faster than many of my peers as I learned the importance of patience and sacrifice and had to watch as one of the people I love the most in the world suffered due to circumstances that were out of my control. Through it all, it was his strength and perseverance that stood out the most, his ability to smile through the painful times and enjoy the little moments was one of the most incredible things about him. Through the many hospital visits and the endless therapy, he found joy in listening to his radio (he loved 70’s Saturday and Delilah), spending time with his friends, family and nurses, and his absolute favorite thing to do, swim. He would spend hours in the pool if he could. He loved to splash. He also enjoyed cuddling with our family dog Cheena, while also giving her the occasional kick in the head when he heard her collar chime next to his wheelchair. The thing Jake loved most of all was hearing me get into trouble. He would just sit quietly and listen to my parents yell and when they were finally done, he would burst out in laughter. Somehow even me getting in trouble became something we all smiled about.
One week before Jake's eighth birthday he became very ill, this time was unlike the many other times that had preceded it; it was just different. Like any time before, Jake came home but he wasn’t improving. I was a Freshman in high school at the time and I had just started at a new school. I got called out of school early one day which was very odd because my parents never pulled me out of school, so I knew it was serious. Jake got worse that night, and I awoke the next morning to my dad crying telling me that It was time. I will remember that morning for the rest of my life because it was the morning I had to say goodbye to my baby brother. My mom was holding him as I gave him one last kiss and we all said our goodbyes to the little boy that had such a huge impact on our lives.
Photo by Randy Bacon
Losing Jake was hard, every single part of it. My advice to someone that is dealing with this type of loss would be to give yourself time to think and to heal, don’t blame yourself for the things you cannot control or add any unneeded stress, life is already stressful enough. Do the things that make you happy and focus on becoming a better version of yourself. Finding someone to talk to may be the most important thing you could ever do for yourself. This person for me was Kori, she is the true definition of a real friend. I remember her picking me up from my house the day Jake passed, and we just drove, we didn’t really talk much, we just drove, and she cried with me and she was just there for me. And for the next couple of years we were there for each other, finding that person that you can talk to, laugh with, but also confide in and cry with is so important when grieving. I could never thank Kori enough for what she did for me during this time.
Jake deserved to live a full and wonderful life, but God had other plans for him and that is okay. As his sister, I will wake up everyday knowing that I want to continue Jake’s mission by making it my goal to be a big hearted, loving, strong soul that makes sure everyone around me feels included and understands that anything is possible. It is your attitude towards your situation that makes the biggest impact on the outcome.
Photo by Randy Bacon
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