‘For Jason…A Mother’s Story’
[1]I became a mom at the age of nineteen, to a beautiful, perfect little boy named Jason Matthew Burkhardt. My dream of becoming a mother was fulfilled. My prayers answered. Now I could plan play dates with my neighbors children and show them how advanced my child was compared to theirs. I could also begin preparing, in my mind, for his future accomplishments. You know, the soccer games, riding a two-wheeled bike, all by himself. Watching him excel in school, rarely needing help with his homework and maybe even take him and a girlfriend to a movie one day. I really had it all figured out.
I was nursing Jason but he wasn’t gaining weight and he always had his little mouth open, like a baby bird. I thought that he was still hungry so I kept trying to feed him. I took him to the clinic and they told me to try formula instead. They said that all looked fine and not to worry. So being the mother that thought she knew it all about having babies, I wasn’t concerned and did as I was told. Getting him to suck from a bottle was a bit easier but it still took him over 30 minutes to drink 4 ounces. Finally, when Jason was four months old, the County Health Nurse advised me to take him to see a regular pediatrician. She wouldn’t tell me why and that confused and angered me. She had been telling me that all was well for 4 months now she was being vague and distant. After multiple appointments, tests and scans, I was told that my child had hydrocephalus or water on the brain, a brain tumor, was blind and would never be anything more than he was right then. I couldn’t fathom or digest what I was being told. Someone had read the tests incorrectly. I couldn’t breathe and didn’t want to. I wanted to take my boy and get away from these people that didn’t know what they were talking about. I became even more protective of him and learned to question everything. My world, as I knew it, was gone. It would never be the same secure place that I had created for us. Oh, and what about all of the dreams and goals that I had for him? They didn’t mean a thing! What in the world was I supposed to do now? How could I take care of a little perfect child that would always be an infant, no matter how old he got? Oh Lord, you are asking too much this time. You didn’t even consult with me or give me any warnings before you gave me this baby. You knew all along that I would face this day and that I would be so lost and not prepared. Oh my goodness, you have to tell me what to do, where to go, whom to talk to and how to take care of this precious baby. I was already in love with him so I didn’t need instruction on how to do that but that was about the only thing I was secure about. Luckily, my family lived nearby so that made things better but to be honest, if you don’t live it everyday, you really don’t know what it’s like. Everyone tries to understand and listen but the overwhelming fear, guilt and grief [2] are unexplainable. The doctors told me that they had no explanation for why this happened. They said that the degree was worse because of the hydrocephalus. Jason’s head didn’t get bigger so we didn’t know. The pressure from the spinal fluid went inward and destroyed his tiny brain cells. By the time he was diagnosed with Cerebral Palsy [3] at 4 months of age, ninety percent of his brain tissue was gone. That was how the doctors knew that he would never do things that ‘walker-talkers’ did. That was my name for normal children. The grief was a daily occurrence, just like an appointment. I would always see a child run and laugh and say, “Mama.” My baby wouldn’t ever do that. Or I’d see someone riding a bicycle. It was everywhere I’d look. Just little things that people take for granted. I noticed them all.
I was advised that Jason would only live to be 5 years old, if I was lucky. Well I knew that Jason would prove them wrong. He lived to be 12 years old. There were many challenges during those years. He had to have a feeding tube put in his stomach, so that I could feed him. And he had surgeries [4] to try to correct the spasticity that plagued his little legs. Many times, he was in such pain and I didn’t know what caused it. He certainly couldn’t tell me. All he could do was cry. I would beg God to take away his suffering. ‘”Please God,” I would cry, “Let me take this away from him. He didn’t ask to be born into this crazy world, with all of this confusion.” I didn’t think that God was listening. I guess that’s what I got for thinking. God was there the entire time, helping me to take care of this very special child that I wished for, for many years. I learned after Jason passed away that I knew nothing about being a mother. I just kept taking steps and hoping they were in the right direction. Jason was my greatest accomplishment and his passing caused me the most grief that I can ever imagine but I know that I am who I am today because of being his mom. I was really upset with God for giving me Jason, without any notice then I was really REALLY upset with God when he took my baby away without consulting me first. I had to learn that Jason always belonged to God and the time I had him he was only on loan. I’m no longer angry with God. He gave Jason to me as a gift. He knew that I would love this baby beyond belief and that I would do anything in my power to protect him from the stares and the comments that people always made. Jason touched so many people in his twelve years without ever saying a word or seeing a thing. I am so very proud of my little boy and can’t wait to see him again one day.
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