In a few days I will board a plane with my 11 year-old son, Greyson, for a three week adventure that will span 3 continents and 5 countries. We will visit England, South Africa and Mauritius (a small African Island in the middle of the Indian ocean) with a touch down in Canada. We are excited.
It’s just the two of us.
That’s the answer to the question I get most when I tell someone about our trip. We are two of a family of four. My husband and son will be with us in spirit. But they will be holding down the home front. And, let’s face it, somebody needs to make money. (Answer to the second most asked question I receive: Yes, My oldest son was invited. He didn’t want to miss three weeks of school and football season. He doesn’t feel left out.)
So, why Africa?
Let me start where the story begins. Just over three years ago, Greyson was diagnosed with a rare, neurodegenerative disease called Friedreich’s Ataxia. Life as we knew it ended that day. Friedreich’s Ataxia (FA) is a life shortening and debilitating disease. You can read more about it here.
Greyson’s has hypertrophic cardiomyopathy, meaning the muscles that are the walls of his heart are thickening. He has difficulty maintaining balance and walking is becoming more difficult. I don’t think he has been able to run in well over a year. The disease causes scoliosis and it is progressing. His hearing is getting worse. I notice he has trouble hearing in groups. He prefers an iPad to the TV because it is closer and he can wear headphones. His handwriting is slow and nearly illegible. His speech is slurred but he is still easily understood. His hand shakes when he picks up a glass and he often modifies how he chooses to take a drink. I could go on but honeslty the list is too long. It consists of things that most of us simply take for granted. The basics.
On the ride home from one of his cardiology appointments, Greyson asked me if he was dying. I answered, through tears, that we are all dying. He responded, “I’m dying faster.” And, frankly, he is.
Greyson started wearing glasses a few years ago. Last January, we learned his optic nerve is thinning. Yes, that means what you think it means. The good news is that it should be a slow progression. I was in my garage cleaning something when the ophthalmologist called me. I recall sitting down after I hung up from the call and thinking: Really? You are going to take everything? That night I handed Greyson a travel book and said how about you and I go on an epic adventure? You pick. Anywhere.
The next week my sister sent him a travel book specifically for children and he read it from front to back and made lists on where he wanted to go. He read it until it started to fall apart. Bali was in the running but he finally settled on Africa saying, “I’ve wanted to go there my whole life.”
And so we are setting off to hear sounds and see and smell and touch and put our feet in the sand and soil of the earth. We are off to experience and celebrate living. We are off to feel the spirit of exploration and adventure — to feel that part of life that is about possibility and discovery.
Greyson is, like all our children, a remarkable human being trying to navigate life. He loves his friends. He has a wonderful imagination and still enjoys playing within it. He is wicked clever with a potent sense of humor. He is determined and stubborn. He is doing the best he can to sort out where he is and what is facing him with a limited ability to even give words to his feelings.
I’ve spent the last three years learning how to stand on the corner of joy and grief. Raising a child with a chronic illness, a rare disease or a terminal diagnosis asks us to live at the intersection of these two emotions. There is still life to be lived and fun to had. There is still plenty of joy to experience.
This blog is for all the parents like me who wake up every day with a broken heart but love fiercely anyway. It is also for the people who love us and who maybe, just maybe, have the guts to sit with the complexity and pain of our situation. This blog is for caretakers. It is for anyone who finds themselves trying to navigate the corner of joy and grief.
Our circumstances and our children are no doubt as different as we each are as individuals but I believe we have common ground – a common ground that needs a voice.
If you want to follow our trip feel free to follow my personal page on Facebook or “Frankly” at fb.me/thecornerofjoy.
If you would like to donate to the Friedreich’s Ataxia Research Alliance (FARA), you can find out how here. I believe a cure will be found. I hope it comes soon enough for it to help my son.
Frankly 