Month: July 2020

Change is hard. Period. I also don’t do well with chaos; as a matter of fact it makes me slightly nauseous. I thrive with a predictable routine and I absolutely hate being blindsided with spontaneity unless you give me a head start on preparing to be spontaneous. Don’t mistake that for a hatred of risk-taking. I love a good risk, as long as I can research it for a (preferably significant) period of time, analyze the pros and cons, project how it may or may not affect my budget, run a few (dozen) impact scenarios, and then sit with my spreadsheets reviewing the data over and over. Case in point: I bought myself a tattoo for my 40th birthday, and it only took me 5 years to pull the trigger on it.

So, knowing this, the Universe created the OHT and flung him gently into my arms and heart in 1997. “Don’t like change? Meet your son.” And then It sat back and laughed, and laughed, and laughed at my futile attempts to control the outcome of the millions of change moments that were launched from the minute he drew his first breath. No worries, It also gave my boy the fighting spirit of a fierce warrior, the sense of humor of the best comedians, and the gentlest soul filled with joy and laughter, love and light that I have ever encountered. My boy used all of that to teach me about change, and chaos, and going with the damn flow.

Man, I tried so hard to control everything. I would put us into a routine, things would cruise along for a bit of time, just enough time for me to think “OK. I have a handle on this parenting thing. Making progress, all good, Others are quiet, Heidi is in control!” And then wha-bam. A fever, high enough for a trip to the ER and time off work. Or an email/call from an Other, reminding me that they really weren’t quiet, they were just lying in wait to blindside me. Something would drive a stick into my carefully spinning internal orbit, shattering it and hurling the debris of my perceived control all over the chaos that ensued. And I would go off the rails, sliding down into a shame spiral from the inability to keep control of the uncontrollable situation.

I spent a lot of time trying to control the uncontrollable. Change is inevitable, I know that, but I hated change and the chaos that came with it. In my mind, they went hand in hand. Internally I was a mess, trying to anticipate change and mitigate the chaos that ensued. However, along the way, I discovered gratitude for my boy and what I thought were his coping skills. Nothing, absolutely nothing, shook this kid from his center of joy and laughter, love and light. Fever? No problem. Off to the hospital to charm the nurses and doctors. Others being Others? Meh. Smile gently, dismiss them thoroughly and move on. Sure, he got angry, and sad, and frustrated. But he expressed it in his way, and then he moved on, letting none of it sit too long within himself. Self-regulation, thy name was Noah. He never once allowed change or chaos to move him from his center. Which, in turn, allowed me to return to center and continue the fight. Turns out, it wasn’t his coping skills. It was his spirit and soul.

I think, now that I can look back from a distance, that he didn’t equate change with chaos. Change was one thing, and chaos was another. He didn’t fight with them the way I did, and still do sometimes. He didn’t waste his energy on trying to force calm into a situation. He stayed calm during the situation. And because he did that, he could absorb and accept change and he could absorb and accept chaos. Which left more time for joy and laughter, love and light.

It’s a lesson I still struggle with, a lot. When I find myself swirling in change, I can usually remember to absorb and accept and even embrace it. When I find myself heading toward chaos, I can sometimes remember to absorb and accept that is only temporary. It’s when the two come at me together that I struggle and forget that one doesn’t cause the other and that I cannot control the uncontrollable. However, when that happens, the Universe never hesitates to Throat Punch me with a Dragonfly Moment. Or two. Or three (I said semi-reformed, remember?) Then I can stop, breathe, remember his oh-so-soft and gentle hand hold, his laughing blue eyes, and his sweet, sarcastic voice asking, “Mom. You having a little freak out there?”, allowing me to separate the two, relax, absorb and accept, and to go with the damn flow.

BACKSTORY TO TODAY’S STORY: When Noah was 10 weeks old, he had to have surgery. Specifically, he had to have a Craniotomy and Cranial Vault Reshaping of his sagittal suture and skull. This is when it all began.

I had suspected something was wrong from the beginning. He was 6 pounds, 1 ounce at birth, born with the cord around his neck, and with Apgar scores of 7. They improved after the first minutes, but that’s not exactly the beginning anyone pictures. He got jaundice immediately, in hindsight it was most likely because his brain wouldn’t tell him to wake up and cry when he was hungry. Then he got a fever, pretty high for an infant. And I started to notice his oddly shaped head wouldn’t stay up on his tiny little neck. (sorry, world, even though I adored him from the second he was conceived, he absolutely wasn’t a good looking baby at first. Reference the title)

And so our doctor and I went on a journey of discovery that led me to University of Michigan’s CS Mott Hospitals and the Pediatric Neurosurgery/Neurology department. (This Buckeye did not, in fact, get hives whenever we were there) Where, at 8 weeks old, he was diagnosed with a severe case of Sagittal Craniosynostosis and scheduled for surgery 10 days later, on August 10, 1997.

They did CAT scans of his skull and brain to map the surgery, and I received a call at 8:50PM on August 8, 1997 about those scans. Thankfully, I was already at my parents’ house; they were 30 min from Mott as opposed to the 2 hour, 45 minute drive I would have had coming from home (fun fact, I found out later that I could get there in 2 hours and 10 minutes if I needed to. Sorry/Not Sorry, Michigan State Police). The call I received was from a neurologist on Noah’s surgical team. I don’t remember the exact words, but I remember phrases: “never walk”, “never talk” , “severe seizures”, “severe Cerebral Palsy” and (vomit emoji), “institution”. I also remembered the diagnosis–Schizencephaly. Which, according to him, would lead to all the things listed above and more. However, post-surgery, Noah became a chubby-cheeked, orange-haired, cutie-pants little biscuit (ohhhh, that’s where that came from) who did All. The. Things. that the neurologist said he wouldn’t do, until he couldn’t do them anymore.

HERE’S TODAY’S STORY: This story is about my Grandma Mary S. and my godfather Bink (that’s his nickname). See, Uncle Bink had a diagnosis that led to severe disabilities toward the end of his life, and my Grandma had a lifetime of experience fighting the Others during 1940-1970’s (until 1975 to be exact). She had a lifetime of seeing beyond the diagnosis and into the boy and his potential.

One day, when I was tired, she sat me down at my parents’ kitchen table. Noah wasn’t even 2 yet, and I was battle weary. Fighting the Others is a full time job, on top of the full time jobs of parenting, caring for a sick child, and actually working a full time job. We talked, I cried, and she gave me some advice. Her advice was, basically “fuck the Others and laugh every day”. OK. So she didn’t say it exactly like that. Because I’m not sure Grandma ever swore in her life. Dad? Uncles?

She actually said something more like this: “The medical stuff is what it is. Accept it. Grieve it, in private where he can never see you, but accept it. If you don’t, he won’t, and then he will never be happy. He will always think there is something wrong with him. And there isn’t. You must accept it in order to focus on the battle for your boy. The Others set expectations from their stereotypical understanding of the disabled. They don’t do it out of malice, and they will never change their minds. And you will never change their minds, so your battle will never end. But never stop. Let them think you are “in denial” or that you are “that mom who doesn’t get it”. Because if Noah thinks, even for a second, that you have lowered the expectation, he will never know his true potential. He needs to understand that, despite what the Others think, you know and believe he can do it. Use his milestones met, no matter how little, to fuel your energy and to know you are right, not them. And, this is most important, you must find something, anything, to laugh about every single day. If you do not find the joy and laughter in each day, you will quickly drown and then where will that leave Noah?” My Little Biscuit chose to confirm her wisdom by walking, for the FIRST TIME, to HER, just a few months later.

I took that discussion and stored it in my heart. Noah and I followed it every day. Maybe our humor was inappropriate, but to borrow a phrase from my niece CGM, it was an us thing. You wouldn’t understand. And, whenever I would stray, or forget, or think I was just too tired to continue, Noah picked up a new skill. Or he would wander casually over to me and say something so very sarcastic I couldn’t help but laugh out loud. Or he would ask me if he could read to me. Or he would give me a look, just a little sideways look (not the famous OHT side-eye of doom), when an Other was droning on, and on, and onnnnnnnn, that made me realize he got it. He knew that person was an Other, and he was going to give them his signature ninja-like dismissal. The one where the Other never knew he or she was being dismissed. And then my heart would settle, my soul would be energized, and we would move on. Hindsight shout out to my Grandma, who probably had something to do with all that from wherever good souls go after they leave our Earth.

So, I said all that to say this. Accept the things you cannot control. Grieve them if you must, but accept them. Dismiss the people who don’t believe in you because they are wrong. And, dear sweet Baby Jesus in the manger, find something, anything, to laugh about every damn day