Musings from the mind of a high school math teacher
A sisters journey
My friends...today my blog is about someone else. My daughter. She has begun writing about her journey as the cutest boys sister...consider stopping by her blog-www.anmtmsistersjourneytounderstand.blogspot.com
Today marks two years since the day that changed our lives forever. Two years ago, while I was at school at African Family Night, I got a call from your older brother saying that you were unresponsive. My heart sunk because in the background, I heard your dad's voice and the panic was clear...something was very wrong. I told your brother to call 911 and I gathered my things and began the long drive home. I called home as soon as I was in the car, after calling Grami to go to our house to be there for support. Grami, who arrived at our house amazingly quickly, answered at first and told me that the paramedics were doing CPR...your heart had stopped. My heart was pounding and for the longest time (four long minutes), I waited on the phone, wondering if this was it....wondering if you were going to slip away and I wouldn't be there. I could hear my heart in my heart and began taking deep breaths, almost panting in the car. My legs were on fire and numb...I couldn'…
Yesterday my sweet giraffe boy was released from the hospital. He was admitted a week ago Friday with pneumonia in both lungs. It had already been a rough week. He had been wracked with fever and overwhelming amount of secretions. I won't go into the finer details, but let's just say that there was snot coming from every orifice of his cute face. This was our first hospitalization in about a year. It was both strange and comforting to be there, walking familiar halls that I have walked so many times before.
I have always said, "If you're at the hospital, you don't want them to know your name, but when you have a medically fragile child, you want to go to a hospital where they know their name." That is Randall Children's Hospital. Javad is well known here to both nurses and doctors alike. They marvel at how big he is (almost 16) and how well he is doing. Some were honest, this time, that they never thought he would make it to 16. It's both refreshing a…
Being the parent of a medically fragile child can be like riding a roller coaster with a blindfold on. As you are riding along, the breeze flowing through your hair, all of the sudden you are rocketing downward, screaming, body flying and being jostled from side to side, then a sudden stop where your stomach feels like it's coming into your throat. Then other times, the ride is going along smoothly, rolling hills, laughter and joy. It feels blissful and warm, peaceful almost.
You never know what to expect. In some ways, parenting a medically fragile child is similar to parenting any child. In some ways it is quite simple, you get accustomed to the medical part, you become a professional of sorts, while balancing the constant surprises.
In my small MTM-CNM community, there is a sense of interconnectedness. I don't want it to seem that everyone gets along swimmingly. It's a group of families brought together by children who have the same disease. There are many personalities…