Month: June 2020

Noah’s last four years were hard. No, that’s not the right word. What’s a word for hard times a billion? He started having seizures on March 23, 2012. His first one was atonic (formerly known as a drop attack) and lasted at least 6 minutes, maybe a little bit more. Scared the shit out of me, even though I knew they were a very real possibility for him. (He, of course, took it in stride). They started coming weekly in October 2012, and we added a second anti-seizure med. Tonic-Clonic seizures (formerly known as grand-mal seizures) came in January 2013, and we added a third. Then came absence seizures (formerly known as petit mal) and a couple other kinds, and they started coming daily, so we added a fourth. They started clustering, or occurring in nasty groups lasting for hours, and we added a Vagus Nerve Stimulator. Then they all started coming, multiple times daily, and we added the fifth and sixth meds. None worked with any major success, but they all worked together to keep the numbers down to less than a hundred a day. 

He stopped walking in 2013. He stopped talking in 2014. He stopped being able to control his bladder or bowel in 2014. He started getting hospital admission-level sick on a nearly monthly basis in 2014. Our Palliative Care Team came on board in November 2014.  He stopped being able to eat or drink in 2015. He stopped being able to participate in his care in 2015. His Palliative Care Team secured him a Wish Trip from Rainbow Connection in December 2015. Hospice was introduced in January 2016. And he died on February 19, 2016.

He was tired. All of that made him tired, and sick, and scared. Even though he NEVER said a word or voiced a complaint or acted out in any sort of cranky, tired, sick, scared, angry or bitter manner, I could tell. I could see it in his eyes, read it in his body, feel it in my heart and soul that he was. And in early February 2016, after a very scary hospitalization where seizures threw another curve ball at him–losing oxygen while seizing–I realized that I needed to explain to him what was happening. But how? I was barely able to process it myself, using my old friends Compartmentalization and Shove It In A Box to get through each day. So, in a rare moment for me, I asked his lifelong Physical Therapist, Ms. Colleen, for help. She had travelled the grief path herself, and I was hoping she had answers to the question I couldn’t even verbalize. And she did.

Find a book, she said. If you can, find Waterbugs and Dragonflies, by Doris Stickney. It explains the death and dying process in a simple and concrete way. Find it, buy it, and read it to him.

So I did. On February 12, a friend helped me find the book and buy it. I took him home, we cuddled up in his bed (a hospital bed by then) and I read it to him. 

His eyes lit up. He became energized, yet calm and unafraid in a way that I hadn’t seen in a year, except during his Wish Trip. He demanded that I read it over and over, pointing to the cover as soon as I closed it, taking my hand and trying to open it, and giving me his patented Side-Eye. We read it over and over, and over yet again. I finally asked him, “Noah, do you want to go be a dragonfly?” and with a sweetness and a surety that broke my heart, he signed yes.

7 days later, that’s exactly what he did. He left this earth to go be a dragonfly at 11:00 PM on February 19, 2016 at C.S. Mott Hospital, on our beloved and familiar 12 West. He went on his own terms, surrounded by people who he loved and who loved him. In typical Noah fashion, he gave one last powerful sign to me that the Others were not to be given any value whatsoever, and he slipped away while I held him close and told him I’d be OK. 

Now, I see dragonflies everywhere. I see them in places where and during times when they shouldn’t be, and it lifts me up. These Dragonfly Moments come with perfect timing, either real ones hovering about or gifts sent in the mail, laid on my desk, or hung on my horse’s stall. They come when I’m missing him most, when I’m facing a big change, when I’m questioning my pledge to live with authenticity, when I need a shot of joy and laughter, love and light, or when I need a kick in the ass to get brave, get up, and get on with it.  They serve as a reminder to me that life is to be lived, not to be observed and recorded. They remind me of an orange-haired teen who, even though he was sick, and he was given a brain that didn’t communicate with his body the way it is supposed to, lived life every day with joy and laughter, love and light. And more than a wee touch of smart-assed sarcasm. And, even though I know it’s whimsical and not data-driven and spreadsheet-recordable, I like to think that every time someone reports that they’ve seen a dragonfly (especially an orange or blue one), it is him, checking on that person, making sure they are behaving–but not too much. Because where’s the fun in that?

So, when you see a dragonfly, especially a blue or orange one, say hey to my boy and remember to live your life on your terms, with authenticity, with joy and laughter, love and light, and maybe a wee touch of smart-ass sarcasm.