Days Without Sparkle

Note: I wrote the following post last spring, and never published it. Maybe it felt too personal at the time. I am hesitant to post it today (November 3rd, 2016) also, because this is not how I feel right now. Griffin is now 7 months into his clinical trial, and in the past few weeks he has been skipping and hopping around the house, testing out his new skills. If anything, I feel more hopeful than ever. While there are still days like the one I describe below, the struggle is more subtle now. I have a recurring dream in which I am driving with my kids in the car, and suddenly I can't move. My foot is stuck on the gas, and our speed is increasing. I see a turn coming up ahead of us, and can barely keep the car on the road as we speed around it. The road curves again, and I know we are about to meet our end in a fiery crash. Usually at this point I wake up, or the dream changes. My worries are reserved for anxiety dreams that I shake off when I wake up. I can't share too many details about the trial, but as Griffin puts it "the pokes are helping." I think feeling like we really are doing everything we can possibly do for him helps me to continue to make peace with this uninvited guest in our lives. It is what it is, and all we can do is our best. And we are. And so is he.

March, 2016
I feel like most of my posts end on at least a semi-happy note, about the importance of living in the present, or being hopeful about the future, and that time and medical research will result in a new future for Griffin. And I do try to live my life in a grateful, hopeful place. Since Griffin's diagnosis, life has taken on a glittery sheen, and the beautiful parts seem sweeter and shinier.

But there are days. Like today. Today the sucky reality of Duchenne has settled like a wet wool blanket on a hot and humid day. A few days ago, Griffin slipped on some wet leaves in the woods and fell hard. He landed on a rock, which ripped through his favorite pants and gave him a nasty gash on his bottom. He needed me to come into the woods and help him stand up and then half-carry him to the house. It wasn't because he couldn't stand up and walk on his own, it was because he was in pain and was scared of slipping again. It was a reminder of what is to come, and my heart ached as I wiped away his tears, cleaned up the cut and told him we would patch up his pants. I was painfully aware that at some point soon, he will fall because his legs collapse under him, and he won't be able to catch himself. He will land hard. Over and over again, day after day. Until he gives up and stays in his so far non-existent but very real future wheel chair.

Yesterday I saw that a 39 year old man passed away from Duchenne. This probably sounds crazy, but sometimes stories of men, actual adult men, in their 30's or 40's with this disorder, even if the story is about their death, give me hope that Griffin will live to be a full grown man too. But this time, I saw that this man was exactly the same age as Brian is now. They were born in the same month on the same year. I knew this difficult fact already, but for some reason it struck me more cruelly and coldly than usual that Griffin will probably never be the age Brian is now. I think about how fast time goes, how Brian's mom probably remembers the day he was born like it was yesterday, and how 39 will come for Griffin just as quickly as it did for Brian. And I will still remember the day he was born like it was yesterday.

Griffin is 7, and almost like clockwork, it seems that his glorious honeymoon stage is coming to an end. I'm not sure he is declining yet, but he isn't gaining anymore. He isn't getting faster or stronger anymore. He starts a clinical trial next month, and while we are beyond hopeful that it will slow the disease down, it isn't a cure. It won't change his future. It may keep him walking a few years longer, but it won't do anything to help prevent the currently inevitable heart failure that will eventually take his life. This doesn't mean there won't be a cure, that there won't be anything to prevent the cardiomyopathy in his lifetime (before it is too late), but the truth is that right now there is no cure. Right now, there is nothing to stop his heart from eventually failing.

When Griffin was diagnosed, I had to come to terms with the fact that he wasn't mine to keep. I love Griffin and Ronan equally, but it is almost like Griffin is already part angel, just here to stay with us for a while. His mind is in the clouds, day-dreaming up time machines and imaginary worlds. Ronan is more present, more grounded and connected with the world around him than Griffin is. I have always thought of them as my yin and yang boys. Griffin loves water and roller coasters. He is loud, outgoing and friendly. He never had separation anxiety, even as a baby. He has never been particularly affectionate. He doesn't like to do anything if it wasn't his idea. He doesn't always consider other people's feelings before he speaks or acts. He has muscular dystrophy. Ronan wouldn't go in the water above his ankles until this past summer. He eyes roller coasters with a mixture of fear and suspicion, as if he can't understand why anyone would ever do such a thing voluntarily. He is helpful and agreeable to the suggestions of others. He is quiet and observant. He immediately (almost eerily, for such a young child) clues into how other people are feeling. He likes to know where his parents are at all times. He is cuddly and affectionate. He is agile and as strong as an ox. I can't help but feel sometimes that Ronan was a gift to us, at 3 years old already such an empathetic and helpful person.

Sometimes, I feel almost OK with Duchenne in our lives. I know it is part of who Griffin is, and I wouldn't trade him for anything, and I am grateful for the life lessons and perspective it has brought me. And sometimes, I feel like a caged animal, rattling the bars, roaring at the world, desperate to escape Duchenne, and to free Griffin and our family from it. I see what is happening to older boys and men, to their families, and I think that can't possibly be our story. That can't be what is coming for him, or for us. I don't want to have to give Griffin back. I don't want him to have to use his gifts of courage, assertiveness and ability to transcend to help him navigate what will be a difficult and short life. I don't want Ronan to have to use his gifts of strength, helpfulness and empathy for such a painful purpose.

What I know about these difficult periods, when I find myself unable to find hope, is that I usually come out stronger on the other side. More determined to do everything I can to make each day count, and to do everything in my power to make Griffin's life as fulfilling and as healthy as possible. I will find my way back, and we will go on living our lives with a little extra sparkle, grateful for each good day and each beautiful moment. But today is not that kind of a day. Today I am in my cage. Today, there is no happy note.