The Breath of Life...

Having a medically fragile child can provide you with a variety of experiences that, as a normal parent, you don't have. Having raised an able bodied child previously, I was unprepared for all that I would learn about medicine, all I would learn about myself. Before having Javad, I had walked quite the path. I had majored in Biology in college with a passion in Genetics. I had seriously considered becoming a Genetic Engineer or Genetic Counselor. I was fascinated with the idea that I could help families who had children with a genetic disease, either helping them seek a treatment/cure or the idea that I could hep families discover their genetic history to make family choices. Eventually I decided that Education would be my path. Soon I was teaching Special Education, seemingly another path towards preparation for Javad. After almost seven years of teaching children with a variety of educational needs, I was nearing the time for Javad's impending arrival. I seriously had no idea what was ahead of me.

When Javad finally made his entrance, it seemed that there were virtually no instructions. I mean, I know that being a parent has no instructions but this was even more. I had this tiny child who barely moved, struggled to breath and gain weight. I relied on luck and meeting the right medical professionals to keep things moving forward. I took down notes by writing what each doctor said, memorizing everything so I could talk the language. I relied on my Biology background to find understanding. I was a college educated woman who was out of her league. I worked hard to be knowledgeable and came to realize more and more how the medical world gave very little information yet talked around many issues.

One area that remained a mystery was around providing opportunities for quality breathing. Javad was not given a trach when he was a baby and, frankly, it was never presented in a light that was positive. I was sure that if the decision to get a trach was made that it meant that Javad was nearing death, that this it was a measure of last resort. I knew children that had trachs but they had been placed when they were babies. Somehow that seemed different. When Javad was nearing four, he had a major respiratory event that pushed the doctors to the limit. The writing was on the wall. If the trach was not placed, they would consider not treating him anymore. He was in too much danger. It seemed sudden and severe. I cried...for hours. I thought that I was kissing my sweet boy goodbye. Imagine my surprise when he arrived from surgery and woke up with a smile on his face. He seemed happy. It was so easy to breathe.

Since Javad's seizure, he is almost fully dependent on the ventilator to breath. It is a little scary to know that a machine is essentially keeping your son alive. He used to be off for hours at a time, but I guess when you nearly die and are in a coma for months afterward, its a small price to pay. I don't regret getting the trach nor do I regret the ventilator. These amazing medical miracles are the breath of life for my son. He is able to grow, rest, and expand his lungs regularly with the help of this machine. Sure, its frightening to think that if he should become disconnected his body doesn't have the capability to survive on it's own. He lost most of that reserve after the seizure, but it is comforting to know that every minute his sweet body is being delivered the breath of life. For that I am grateful.

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