Month: May 2020

When I was in college, I took a Psychology 101 class. I was young, I was excited about becoming a special education teacher, and I was so, so, naive. During this class, I learned the 5 stages of grief: Denial, Anger, Bargaining, Depression, and Acceptance through the lens of a teenager with not a lot of life experience. I thought it was a straight line, right? First comes denial, then anger, then, then, then. And when a person arrived at the Promised Land, acceptance, all would be good and they would be OK again. Like finishing a book. Close the cover, and put the book on the shelf.

WRONG, WRONG, WRONG. So, so wrong. Grief isn’t a straight line for me. It isn’t a book to read, with a beginning, a middle and an end where all the ends are tied up and I emerge on the other side with a sense of accomplishment and satisfaction at a good story. It’s a giant fucking hairball of emotions, feelings, soul-sucking thoughts and pain that takes my very breath away. It’s also incredibly confusing for me. I like data, I like things I can see, and hear, and touch. Solid, tangible things that I can make sense of. I spent a lot of time in the beginning after Noah died trying to put this hairball into a format that I could understand. DABDA, right? A nice straight line in a format that I could understand. And where I could trust that there was an end. I can handle anything, no matter how painful, if I know it will end at some point.

Grief. Has. No. Format. I feel bad for my therapists, because they had to spend a lot of time in the beginning trying to gently (sometimes not so gently, and that’s OK) steer me toward that conclusion. Denial? Hell no. It’s not a “this didn’t happen” cloud of fuzziness. It’s a roaring scream of “how could this have happened? Why did Noah have to die? Who the hell approved the plan for him to live a truncated life that ended in pain, sickness, suffering, loss of independence?” Wrapped up in “Anger”. Far too mild of a word. It’s outrage. Black clouds rolling over my very being, wanting to rage at something or someone, to scream, to hurt, to lash out at anything and anyone, including myself, in order to release the pain of what happened. To release the valve. Bargaining? Sure, I want to strike that bargain–I’d give anything to have my son back where he belongs because he was supposed to outlive me, not the other way around. But bargain with who? God? The Universe? The rage usually lands on both God and the Universe, so no. Depression. Wrong word entirely for me. It’s an all-encompassing sadness, that is so great, deep, wide that doctors want to tell me it’s depression. It isn’t, and saying so is an insult to those who suffer from the very real medical condition. And finally, according to Kubler-Ross, the Endgame-acceptance.

Where in this model is Guilt? Guilt that I am here and he is not. That I am healthy, and strong, and he is and was not. The questions that come in the middle of the night or in the middle of a moment where the grief overwhelms me. Did I do enough? Did I not do enough? Did I give him the life he deserved, did we go enough places, see enough things? Did I fight the Others hard enough to make people see his true worth and true self? Should I have fought harder to keep him alive? Should I have fought less hard and let him go earlier? Is it OK for me to be happy? Millions more questions that have no answer. Read that again. They have no answer. I understand that now. They are not borne from my data-driven, observable and measurable soul, they come from the place of grief. Hearing an answer, knowing the answer doesn’t make them go away. They are a part of my grief.

My grief isn’t a straight line arrowing toward the acceptance of closure. It fits no model, or spreadsheet or article. It can’t. Grief journeys are as individualized as a fingerprint. For every person who has to carry it, it is different. We write about it, we post “how-to” articles, we try our hardest to put grief into a box or a book or a blog post (hah!) because I think we want to understand. I think we want to find that acceptance of closure. We for sure want to help our people know how to help us. But for me, there will never be the acceptance of closure like the end of a book or a relationship. My acceptance of this fact, that I will carry this grief with me for the rest of my life, has become my resting place. Until the next hairball of emotion hits, I rest there. My son Noah died. And it sucks, so much I sometimes have no words, that I curl in a ball of dark thoughts, stupid questions and overwhelming feelings, struggling with the pain that is bigger than the confines of my skin, and I wait for it to roll over me and away. When it does, then I can put the grief back into the container inside me where I carry it, and I can uncurl my body, get brave, get up and get on with it. The proof that these moments are coming less frequently, and the intensity of the wave is lessening helps the data-driven part of me. It is something I can measure, something I can observe, and something that makes the carrying just a little bit lighter.

Whew. That was hard to write, and while I’m glad I did, I don’t want to end on a dark and twisty note. So, let me take you to the song Noah and I used to call our Theme Song. It played this morning when I was on the Dreadmill, and it triggered me to come clean a little bit about my personal grief journey and write this post. This is the song he played when we needed a reminder to find the joy and laughter, love and light. OK, I needed the reminder, he never did. And it’s the song I cue up in the middle of the suck moments. Read it, enjoy the poetry, and go find it on the You Tube to listen to it. You won’t be sorry.

Life Ain’t Always Beautiful, sung by Gary Allan
Life ain’t always beautiful
Sometimes it’s just plain hard
Life can knock you down
It can break your heart.
Life ain’t always beautiful
You think you’re on your way
And it’s just a dead end road
At the end of the day.
But the struggles make you stronger
And the changes make you wise
And happiness has it’s own way
Of taking it’s own sweet time.
No, life ain’t always beautiful
Tears will fall sometimes
Life ain’t always beautiful
But it’s a beautiful ride.
Life ain’t always beautiful
Some days I miss your smile
I get tired of walking
All these lonely miles.
And wish for just one minute
That I could see your pretty face
Guess, I can dream
But life don’t work that way.
But the struggles make me stronger
And the changes make me wise
And happiness has it’s own way
Of taking it’s sweet time.
No, life ain’t always beautiful
But I know I’ll be fine
Life ain’t always beautiful
But it’s a beautiful ride.
What a beautiful ride
Source: LyricFindSongwriters: Tommy Lee James / Cynthia Evelyn ThomsonLife Ain’t Always Beautiful lyrics © Sony/ATV Music Publishing LLC, BMG Rights Management

If you hung out with Noah for more than five minutes before he lost his voice, and he trusted you, he would inevitably say, “Let’s Play Music Quiz!” and hand you his most prized possession after Bear, his iPod. The headphones would be tangled into a giant knot because he only ever listened with one earbud in so he didn’t miss anything. But we all knew to not give in to the temptation to take the earbuds and try and untangle them, he had no time for that nonsense and you would get the gentle hand-over-hand combined with a side-eye directive to remove yours from them immediately. It wasn’t about the tangles, it was about him guessing the song you dialed up. (see pic, because it truly was a dial up situation). If my boy asked you to play Music Quiz, you were in. He didn’t hand that thing over to just anyone…..

This was his favorite, favorite, favorite game of all time. He would sidle up to me, and then he’d lean on me, hanging out for a second or a minute. Then, Boom, the iPod was in my face. I’d look over, and there he’d be, staring at me with his sparkly blue eyes. “Let’s Play Music Quiz, MOM!” would come out of his freckled face. How could anyone resist? I’d put down what I was doing, and we’d play until he got tired of showing off his expertise, take his iPod back and run off. He took great pride, I think, in being right all the time. 500+ songs. He knew each one well enough to sing them, every word, and he enjoyed them so much he knew who they belonged to and what they were called. We played it all the time, and if you were “in”, he’d play it with you.

So the game was played like this. You hid the tiny screen from him, dialed up a random song from his 500+ song library, and hit play. He had to guess the song. Simple, right? Here’s where it starts to get a little Universally Throat Punchy. He never. got. it. wrong. Never. It didn’t matter what song you picked, he got it right. And, he got it right within the first 7 seconds. How do I know that? Because, being the data whore I am, I kept track. Also, he never gave just the song title. He gave the song, the artist, and about 95% of the time, the album. The other 5%? Standalone songs.

Why is this Universally Throat Punchy? First, remember, this is the boy who would never walk, talk, read, write, sing, dance, or any of the other things THAT HE DID DO, thankyouverymuch. He was slapped with labels, preconceived notions, and lowered expectations practically from birth. Not only did he know those songs, he could sing them, he could manipulate the device needed to find them, he could read the information on a squinchy little screen, and he could do all of this independently. Take that, Others. Take that. Second, I have his songs in my iTunes now. Whenever I’m feeling some kind of way, I will say “Noah, give me a playlist”, and I will hit shuffle on his songs. Every single time, the playlist (of 500+ songs to shuffle) will spit out exactly what I need for that moment. If I’m feeling down and shame-spiraly, I get songs like “Don’t Stop Believing” by Journey, and “What Makes You Beautiful” by One Direction. If I’m missing him especially, I get all of “our” songs like “Home” by Phillip Phillips, Kenny Chesney’s “Anything But Mine”, “Sweet Child Of Mine” by Guns N Roses. If I’m needing to laugh, I’ll get any Christmas song in the playlist because ew. Christmas songs. Grinch GIF. If I’m needing to kick some ass and get motivated, I get songs like “the Greatest Show” from the movie soundtrack and “Man! I Feel Like A Woman” by Shania Twain. And, ever if I’m doubting that there are things the Universe knows and does for me, and that he might be here watching and laughing, I’ll get “Been Here All Along” by Hannah Montana. Every time. I never say my mood out loud, by the way. Somehow, the Universe knows and gets it right. Even if I don’t know what it is.

“Let’s Play Music Quiz” has had to evolve into “Noah, give me a playlist”. It’s gone from being a symbol of all the things he checked off of the “Noah Won’t Do” or “Noah Can’t Do Because” lists the Others created, to a symbol, for me, that the Universe, guided by the sweet hand of my Orange-Haired Teen spinning the wheel, will Throat Punch me if I need a reminder to stay true to my authentic self.

We all do it. We name our child, our pet, our plant (no judgement here), and immediately think of ways to shorten it or revise it to fit our mood at any given time. Or their mood. Do plants have moods? *shrug*

Everyone had nicknames for my boy: Mellow Yellow (see earlier post about jaundice), Moo Shoo, Sweet Pea, Scooter, Little Biscuit, Rollin’ Coconut and so many more. But my favorite, my all time favorite, of the nicknames bestowed upon the OHT was the one my Mom gave him. She dubbed him Noah Balboa during his first summer on the planet. I’m sure the first impulse was the rhyming thing, but man, it quickly became obvious that it fit him perfectly.

Noah had to fight from the beginning. He had jaundice and a high fever days after he was born. He was diagnosed with schizencephaly and given the prognosis of: might never walk, talk, read, write, sing, dance, might have life-ending seizures. He was born with a brain that struggled to communicate to his body what he wanted it to do. He was born with an immune system that would fail him, over and over again. However, thankfully, he was also born with a will so strong that he blew through all the stereotypes, the prognoses, the diagnoses and he lived and did exactly what he wanted. Until he couldn’t.

He, with the help of an equally strong-willed preschool teacher, taught himself to read. And read voraciously. He, with the help of physical and occupational therapists equally as strong-willed, walked, ran, danced, climbed, slid, rode a bike AND a horse, wrote, fed and clothed himself, and made his body do what he wanted it to do. He, with the help of speech therapists equally as strong-willed, spoke, sang, and was able to let his sarcastic soul fly free with his words. When I would hover, worried, watching, waiting to catch him should he fall, he would simply turn to me, lay a gentle hand on mine and say, “Mom. I do it MYSELF”. What could I do? I backed up, blocked and fought the Others who tried to make it easier for him, who disappointed us daily with their efforts to set the bar lower for him because it was harder, and let him do it HIMSELF.

And he did. He fought hard, every day, to do the things he wanted to do. Everything was harder for him, much harder, but he did it. Everything took longer, but he didn’t care. He figured it out. When he got sick, and when he got sick he got really sick, he fought, and he came back. His fevers ran in the 104-105 range. His colds nearly always led to an infection of some sort. He never got a “mild” stomach bug. He never got the 12 or 24 hour bug, his lasted longer. And when epilepsy hit, it wasn’t a seizure here and there. It was hundreds, of all kinds, all day, every day. And yet, he fought. He rallied, he did what the doctors told him to do, and he fought to do the things he wanted to do. The list of things got shorter as epilepsy wreaked havoc on his physical systems, but he adjusted, and he continued to fight. Until he couldn’t. And, only after he understood that I would be OK, did he sweetly, gently, simply, stop fighting and let go.

Noah Balboa. Best, most accurate nickname I have ever seen or felt in my soul. Thanks, Mom. ZZ