Along with SMA, KoKo had PKU, which is a metabolic disorder that affects the kinds of food she can eat. She was the only person medically documented in America with both diseases. Her doctors found this fact interesting because both deceases are degenerative hereditary conditions, and the chances of a child being born with both was one in a few million.
KoKo isn't the only one out of my children with PKU. My 14 year old daughter has this condition as well, and her and KoKo share the same metabolic specialist.
Our last visit to see my girls PKU doctor was about a month before KoKo died. You can imagine my hesitancy to go there again. Since KoKo's birth our visits to see this doctor was a bonding time for my two girls. It was something they were comrades in. They had to drink a special formula and was limited to certain foods to keep the PKU in check. In short neither of them had to jump this life long hurdle alone.
Now that KoKo's gone the thought of going back for my teenager's checkup made me extremely anxious. I'd never been there without both my girls. Even when my 14 years old was living with my aunt and grandmother, when she was little, we coordinated their visits together. I was terrified of being overwhelmed with KoKo's obvious absence, and that fear made me conveniently "miss" the appointment scheduled in June.
I know this was extremely selfish of me. My teenager bugs me regularly about going to her PKU doctor. She's old enough to understand that she needs to be monitored and the time between visits had been very long.
I know that losing one child does not stop my responsibilities to my other children. Even in death life still continues, but the dread that I felt as the appointment day approach rendered me.....immobile......frantic......depressed. My allergies even went haywire the day before the appointment. My mental state had turned on the body that was its captor.
The doctors secretary called me a week later to inform me that I missed my daughters visit. I'm embarrassed to say I played stupid and acted like I thought it was July 27th not June 27th. I rescheduled for August.
The day came for me and my 14 year old to go to her appointment. Everything about that day was exactly what I feared. I scheduled medical transportation two days prior, and though it was the same company that took KoKo back and forth to school everyday, it wasn't a medical vehicle at all. We were picked up in a green minivan, with no lift or special equipment that I'm use too. KoKo's absence was painfully clear and reflected in everything that went on that day. We got to the doctor and the elevator was empty, reminding me of all the times I wished it was vacant of other people so I could avoid rolling over toes and bumping into legs with KoKo's wheel chair.
Being the first appointment of the day we saw the doctor ten minutes after our arrival. Everything with my teenager was routine, and then the doctor asked me how I was doing.
I couldn't' contain the tears. My eyes welled with so much water I could barely see.
We spoke about how the kids were handling our family disaster as well as the recovery process. By the time our visit was over my makeup was wrecked and I was emotionally spent. We finished our appointment revisiting some memories of KoKo and double checking my teenagers diet plan.
When the transportation picked us up we had a fellow rider. An old Egyptian man that rode with us and KoKo on various occasions to the doctors office. I said hello and he didn't recognize me. When I mentioned my daughter he remembered instantly and asked how she was doing.
I've recounted the events surrounding KoKo's death over a hundred times now. And every time I do it it's like opening a new wound all over again.
KoKo isn't the only one out of my children with PKU. My 14 year old daughter has this condition as well, and her and KoKo share the same metabolic specialist.
Our last visit to see my girls PKU doctor was about a month before KoKo died. You can imagine my hesitancy to go there again. Since KoKo's birth our visits to see this doctor was a bonding time for my two girls. It was something they were comrades in. They had to drink a special formula and was limited to certain foods to keep the PKU in check. In short neither of them had to jump this life long hurdle alone.
Now that KoKo's gone the thought of going back for my teenager's checkup made me extremely anxious. I'd never been there without both my girls. Even when my 14 years old was living with my aunt and grandmother, when she was little, we coordinated their visits together. I was terrified of being overwhelmed with KoKo's obvious absence, and that fear made me conveniently "miss" the appointment scheduled in June.
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| KoKo and Montsho |
I know that losing one child does not stop my responsibilities to my other children. Even in death life still continues, but the dread that I felt as the appointment day approach rendered me.....immobile......frantic......depressed. My allergies even went haywire the day before the appointment. My mental state had turned on the body that was its captor.
The doctors secretary called me a week later to inform me that I missed my daughters visit. I'm embarrassed to say I played stupid and acted like I thought it was July 27th not June 27th. I rescheduled for August.
The day came for me and my 14 year old to go to her appointment. Everything about that day was exactly what I feared. I scheduled medical transportation two days prior, and though it was the same company that took KoKo back and forth to school everyday, it wasn't a medical vehicle at all. We were picked up in a green minivan, with no lift or special equipment that I'm use too. KoKo's absence was painfully clear and reflected in everything that went on that day. We got to the doctor and the elevator was empty, reminding me of all the times I wished it was vacant of other people so I could avoid rolling over toes and bumping into legs with KoKo's wheel chair.
Being the first appointment of the day we saw the doctor ten minutes after our arrival. Everything with my teenager was routine, and then the doctor asked me how I was doing.
I couldn't' contain the tears. My eyes welled with so much water I could barely see.
We spoke about how the kids were handling our family disaster as well as the recovery process. By the time our visit was over my makeup was wrecked and I was emotionally spent. We finished our appointment revisiting some memories of KoKo and double checking my teenagers diet plan.
When the transportation picked us up we had a fellow rider. An old Egyptian man that rode with us and KoKo on various occasions to the doctors office. I said hello and he didn't recognize me. When I mentioned my daughter he remembered instantly and asked how she was doing.
I've recounted the events surrounding KoKo's death over a hundred times now. And every time I do it it's like opening a new wound all over again.
