Part 1
I have written posts for this blog on a few occasions, typically addressing various aspects of being a parent of a child with special needs. Often dealing with doctors who don’t listen, or a medical community that is challenged when it comes to treating children with special needs. That status is no longer applicable; our son passed away earlier this year.
It was very unexpected. He was not what one would describe as medically fragile, and outside of chronic ear infections, he was healthy and had enjoyed the previous year as one of his happiest, most animated and engaged periods. We went to the ER expecting the most recent fever to be another ear infection. Turned out to be the beginnings of pneumonia, which we subsequently discovered was caused by aspiration. Every time he swallowed liquid, he was taking some of it into his lungs.
The instruction to stop all oral intake was immediately challenging. His seizure medicine did not have an equivalent that could be given in an IV. This meant using a nasal feeding tube, a nasty and short-term solution. The ultimate solution would have been a gastro feeding tube, but no surgery could be performed until his lungs were healthy enough to handle the anesthesia. Doctors said his lungs were too badly damaged, like a severe sunburn, and weren’t likely to improve. With limited options for proceeding, none of them that had hope of a genuine recovery, we made the difficult decision to place him in hospice, and he passed away peacefully a few days later.
They say the loss of a child is the worst loss one can experience. I don’t have much to compare it to since I wasn’t present for the loss of other relatives in my life. But I can say that watching your child die is awful. Horrible. Gut wrenching.
The hospice staff were very good about explaining the process and helping us understand what his body was going through. It was easy to feel a sense of guilt over making such a life ending decision, thinking that it was going to be a painful event for him, and the explanation of the process provided some relief from that guilt.
One of the challenges/complications with our son was that he was non-verbal. He couldn’t tell us how he was feeling. Was he uncomfortable? Did he need more meds to ease discomfort? And I felt particularly bad that we couldn’t communicate with him. to try to explain what was happening and why, and to try to ease his anxiety. I don’t know that it would have helped, but I couldn’t stop feeling the need to do more than just continuing to speak to him in soft, reassuring tones.
The first few days after his death were a bit of a fog as we dealt with the shock and the aftermath. We had been two weeks in the hospital, with all the lack of sleep that such a stay entails. The first night home, I think we slept for 12 hours. Then began the sad process of putting away all the things that were part of the caregiving process. Lots of medications to dispose of. Clothes to launder and put away. Boxes of diapers and wipes to find a home for. It was a tear-filled process. Still is. After three months, we still haven’t done anything with his closet or dresser. For at least a week or so, we often caught ourselves glancing over at his spot on the couch, as if he might still be there.
The shock to our systems was much more than the loss of a person. He was a child with special needs, and we were his only care givers. Our entire world revolved around him. Sleep schedules. Meal times. What days were available for us to run errands and schedule our own doctor appointments. When we could go out for lunch together. Even what cars we could drive. Suddenly, that focus was gone. With nothing to take it’s place. The feeling of emptiness was oppressive. Sometimes still is.
My wife said she didn’t know there were so many hours in the day as what she now had on her hands. After taking care of cremation arrangements, she was able to start putting more time into her vintage home decor business and getting a more solid 8 hours of sleep per night. She also comments that the house is too quiet now, and she misses the commotion.
I have had a greater challenge with sleep. While he was alive, Brett generally slept at most about 5 hours at a time, so we slept in shifts to make sure one of us was always available when he woke. My shift gave me about 3 hours of sleep during the night, plus whatever naps I could get during the day. Now, my body seems to want to wake after about 4—5 hours, but I’m hoping that will change over time.
How are we doing? We are getting on with our lives as best we can, slowly adjusting to the absence of restrictions and the extra hours. I have been putting a lot of time into catching up on the yard maintenance and household chores. It keeps my mind occupied. Both of us struggle to talk about him with each other without choking up and breaking out in tears. It’s also impossible for me to talk about him and the events leading to his passing without breaking down. As we adjust to a new life, we are gradually taking advantage of the freedom, with meals out, a movie night, even planning an out of town trip (that had to be subsequently cancelled due to illness). I’m hoping we can do more of that going forward.
What will the ongoing process be like? I don’t know, but I’m fairly sure that it will be slow, with occasional tears still. If I feel I’ve something worth while to share, I will post some more.