My son just turned 8 years old. It’s been amazing to watch the changes in him over the last few years. He’s reading more on his own. He put together a 500-piece Lego set by himself. He’s doing more things by himself that he used to need our help with. This stage of life and of development has continued to surprise me.
Many things have not changed, though, too. He’s still having seizures in the morning. He’s still juggling medications and side effects. He’s still on the strict ketogenic diet, which means he still can’t eat what he wants. He still gets constipated. He still feels different. He is still having a hard time making it through the week and sometimes through a school day.
We’ve been on this part of our journey for more than three years. More than two years on the diet. More than ten medications. Hundreds of doctors appointments, tests, and therapy sessions. We’ve seen countless seizures, and they keep coming with no end in sight.
Earlier this year, I read Endurance about Ernest Shackleton’s journey to Antartica. It’s an incredible tale of a failed overland expedition to the content. The title of the book was taken as much from what the explorers went through as it was from the name of their ship. They survived the loss of the Endurance, treacherous conditions, and a lack of food in an unforgiving part of the world. Along the way, groups were left behind to establish camps while others continued the search for help. Imagine the feeling of watching your best chance of survival disappearing in the distance, hoping they will return.
I called to the other men that the sky was clearing, and then a moment later I realized that what I had seen was not a rift in the clouds but the white crest of an enormous wave. ~Ernest Shackleton
Some days I feel like Shackleton, pushing through, fighting for my son, stopping at nothing until I can save him. We’re trying to function, to get up every day, to go to work, to try to live a normal existence. Because we have to. Because there is no alternative, even under the siege of enormous waves. Because, like Shackleton believed, there is too much at stake.
Other days, I feel like the men he left behind. Stranded on an island, waiting, and hoping that someday we will be rescued. Every day, they woke up, walked down to the shoreline, looking for a ship. For months, that ship never came. Like them, we’re afraid. Every day, we wake up and look to see if we will be rescued. Instead, we watch our son lose control of his body. Every day, we see how hard he fights. Every day, for three years, with no end in sight.
Most days, I fluctuate, rising and falling like the cold waves crashing on to the frozen shore. I am not brave enough or strong enough to face every day like Shackleton. It tears me up to see what is happening to my son. To see him struggle every day in so many ways. It strips away my courage and leaves me wanting to be rescued. But the unbounded love I have for my son and my family forces me to soldier on, to fight for everything we get, and to not let epilepsy take more than it has.
Eventually, Shackleton’s journey came to an end. After more than a year of impossible challenges, Shackleton and his team found help. They went back and rescued the rest of their men. One day, those men that were left stranded make their way to the shore and looked out on to the horizon to see their captain returning for them. To see their lives returning to them.
I can only imagine the glory of that feeling. We are standing rocks, piled together on the shore looking in the expanse before us. I long for the day when I will look out on to the horizon and see a different life than the one we have been leading. A life where my son doesn’t have seizures. A life where he doesn’t struggle to do what so many others take for granted. A life where he can be free.