Hope

Sometimes I think I must have done something pretty terrible in a previous life. Don’t get me wrong. It’s not that I am ungrateful for all I have: The best parents ever, a loving husband, and amazing family and friends. I will always be thankful for all of these people. But when it comes to the health of the two people who matter more to me than anyone or anything else, we drew the proverbial short straw.

For 23 years, we have fought to keep our two offspring alive and happy - and mostly failed. Charlie, of course, died after 16 years and 5 months almost to the day. She had been struggling with mental illness for about 5 years. For many of those I woke up each morning wondering whether that would be the day I would find her no longer breathing.

In the days and months when Charlie was okay, I was focused on James, whose life has been far more difficult than most. The first time he ever mentioned wishing he was dead, he was about six or seven years old. At 12, he suffered a concussion which left him with constant headaches. At 15, almost by fluke, he was diagnosed with autism, which explained his loneliness, depression, anxiety, and sensory avoidance.

Over the past two decades, we have seen more doctors and mental health professionals than I can count, seeking answers and help with his challenges. With few answers and fewer solutions, over and over we have been left to fend for ourselves… which leads me to the reason I haven’t written much in the past year.

While we, as a family, have been wading through the swamp that is grief, James’s health has gone sharply downhill. He is has constant chronic pain not just in his head but also in all his joints, so much so that he has had to take a leave from university. He is desperate to go back but his pain makes clear thinking impossible.

Sometime in the fourth quarter of 2024, James set a deadline of the end of 2025. If we can’t resolve at least some of his pain, he will seek to end his life. My job has become a daily struggle to keep James positive because there are many days and weeks when he wishes he weren’t here and doubts he has a future worth living for.

One such day was Thursday last week. For some reason unbeknownst to anyone, James’s constant head pain spiked. His ears popped and his nose started bleeding. For a person with hemophobia (a fear of blood), this was extra scary. I sought advice from a good friend (and physician) and we headed to the emergency room. The CT was clear but without the IV drugs James was given, I’m not sure how we’d have gotten through the night.

This is our family’s reality. It’s one that has cruelly taught us there are no happy endings. But every once in a while there is a glimpse of light.

It’s hard to describe what a relief it was to hear James tell me today “You know, today my knee is really sore but it isn’t affecting me mentally because now I know that I can get relief from this pain.” The awful night that took us to emergency, also taught us that there is medication that can help. James obviously has an as yet undiagnosed inflammatory condition that responded to a powerful non-steroidal anti-inflammatory drug. It only reduced his head pain a little, which remains his greatest barrier to life, but it took away his joint pain, if only for a little while.

Hope is what Charlie lost. Hope is what I am doing everything in my power to help James to maintain and he is fighting like heck to hold on to. As my sister and I both always say, “baby steps”. All we can do is take each day as it comes because tomorrow isn’t promised. But we’re never going to let go of hope for something better.