Worst Weeks

It would be safe to say that in the last couple years I have had a couple weeks that would qualify as the worst week of my life. I hope no one ever asks me to choose because I can’t figure out which one I would pick. The first “worst week” would be the week I had the car accident. The second occurred a year ago. It was the week Bennett was diagnosed with cerebral palsy.

Jim and I traveled to Cuba in early January for a break and a fresh start after every thing that had happened – car accident, baby, multiple surgeries, endless physio, etc. We returned home and within days I came down with a horrible stomach flu (those paying attention will notice that it happened again this year). During this time we also ripped out our kitchen in preparation for new cupboards. My flu was better by Monday but then Jim got sick. Bennett’s appointment with the pediatrician was on Tuesday. I was worried because Bennett was not crawling or talking. We had noticed that he was predominantly left handed but this didn’t cause us any concern.

The doctor was not very personable and began the appointment by telling us to take Bennett’s socks off to help him walk and to get rid of his soother. In the last 10 minutes of the appointment after she finally examined him she turned and told us very bluntly, “he has cerebral palsy – he should walk and he should talk but not until he’s at least 2 or 3”. I asked if she could be wrong and she said no. I asked if it could range from mild to severe and she said yes. Jim didn’t say a word. And soon I didn’t know what to say either. It was like the room had gotten dark and all the air had been sucked out. She said she didn’t have any other information for us but would refer us for therapy. We got up and walked out and when I passed her she told me I should walk with a cane. I said “thanks”. In silence we went into the porch to put our shoes on. The doctor followed and stuck her head through the door and while laughing asked us if he had any feeding problems. We said no and walked out the door. We cried all the way home. It felt like the world had ended.

By Wednesday, our kitchen was still a disaster, Bennett had cerebral palsy and Jim kept getting sicker. Family came over, we all cried, we all questioned her diagnosis. By Thursday Jim was worse – a lot worse. I don’t know if I’ve ever mentioned it before, but Jim is a diabetic. If we hadn’t been so devastated by Bennett’s diagnosis we probably would’ve paid closer attention to his health that week. By noon it became apparent that Jim had to go to the hospital. My parents took Bennett and I went with Jim who was quickly admitted. In the emergency room we learned that he was suffering from ketoacidosis, a deadly condition for diabetics. I can still remember walking down the hallway hearing him gasp for each breath – I learned from the doctor that this is called Kussmaul breathing a side effect of ketoacidosis. Another effect of ketoacidosis is a low blood ph – normal is between 7.35-7.45. In acidosis the ph dips below 7.35. Very severe acidosis may be as low as 6.9 -7.1. Apparently a level of 6.8 is incompatible with life. Jim’s level was 6.9.

I remember sitting at the foot of his bed with tears streaming down my face wondering whether Jim might die and trying to figure out how I could go on. I was a woman who could barely walk and had a son who was just diagnosed with cerebral palsy. I know from experience that things can always get worse but at that moment it seemed about as bad as it could get. Jim was in the hospital for 4 days. I rarely left his side – how could I after everything he had done for me after my accident? Bennett was ok – he didn’t know he had cerebral palsy – he was still his happy self. Jim needed me and I needed to be with him. I remember hearing people say that when you’re going through a difficult time to focus on just getting through the next minute. So that’s what I did. I have never looked at my watch so many times in my life.

Since you’re all reading this a year later, you know this story has a happy ending. Jim recovered and promised to take better care of himself. My kitchen got cleaned up and I have new cupboards. We also got a new doctor for Bennett. In many ways the darkness of Bennett’s diagnosis has lifted and the light of his smile and his spirit has once again brightened our world. I plan for this to be the only acknowledgment of this particular anniversary. I will always recognize the anniversary of the car accident – it was too big to forget or ignore. But the anniversary of Bennett’s diagnosis is a day that I hope I will forget as time goes by. Even though it was only a year ago, cerebral palsy has become part of our lives and part of our family. Not a welcome member but it is what it is and on we must go…together.