I, like most of us who make up the cyber world, have never met you but have nonetheless been invited into a very sacred part of your life journey. I've read parts of your story several times. I sometimes watch your videos on repeat, just to catch a glimpse of the haunting wisdom in your eyes. Most of us have seen the countless articles from supporters and critics alike. Everyone seems to have their own ideas about which decisions would be the best ones for you and your life.
I've read that some believe you to be selfish in choosing to end your life prematurely, and others applaud your ability to do so. I'm not here to champion either side. I'm simply writing to say...Thank You. Thank you for sharing such an intimate moment in your life. Thank you for giving a voice to the idea that "life at all costs" isn't as simple as it seems. And I thank you for unknowingly giving me permission to let go of the guilt I carry for choosing a similar path for my 2 year old son.
Although we didn't know what we were fighting for most of his life, eighteen hours before he died we were given a name for his debilitating disease. Once that positive result passed through the lips of the neurologist who sat next to me on my makeshift "parent bed" in my son's ICU room, I knew what it meant. It meant only one thing. He was terminal. In fact, he'd technically been terminal since birth. The gravity of that moment will always weigh heavily on my broken heart. The deafening silence that surrounded me as realization began to form will forever haunt my thoughts. I'd had a decision to make, and I made it. Yes, he was going to die, but I chose it. I had to say the words, "Do Not Resuscitate." Me. His mother. I had to. How does a mother choose this? How do you choose the time that your baby dies? You just do. And I did.
In one of your videos, you mentioned that if you got to choose what happened after your death you would choose for your mother to be ok. She won't be, of course, but I can tell you that by choosing this yourself, you're giving her the only gift you've got left. My son couldn't tell me that he was done fighting. I fear closing my eyes at night because I'm immediately transported back to that moment, to that awful day that I gave the go ahead to disconnect his life support. Was it too soon? Did he have more fight left? What if I'd made a mistake? So you see, hearing you say that you would choose to leave on your own terms, before life became unbearable is salve on a wound that I never thought would heal. Your mother will be spared those last few days of seeing her child suffer as a shell of her former self. She'll be spared that question of whether or not the time has come. Some claim that you are selfish for your choice to pass away on your own terms, but I can't think of a more selfless act. You are leaving them with happy memories of you, of choices that you made yourself, and with the peace of mind that you've fulfilled your wishes.
The loss of my son was soul-shredding. I spend every breath trying to find reasons to pick up the pieces and put them back together. Some pieces, I'd assumed, would be gone forever. You've proven me wrong by sharing your story and lifting a giant burden from my shoulders. The ache in my chest is lighter because of your honesty. I thank you for that immeasurable gift. My wish for you is for peace in every decision you make, and enough love to carry you through the process.