Taylor turned 24—24!—a week ago and I’m still processing it. Partially I think because I wasn’t there to celebrate it and that’s rare, I usually always make the trip home for it but this year it didn’t quite seem like the best idea with everything going on—working, starting up real estate, bathroom addition, Evelynn’s virtual schooling…the list goes on. Even more, I think it’s because every birthday of his, every year he lives, is incredibly unexpected. His birthday hits a little differently when you grew up being told he won’t live long, when he was always given a “deadline”.

I’ll never forget the Christmas that started late because he woke up blue and my parents had to rush him to the hospital that morning—I was 10.

Or I’ll never forget the call my third year in college when I had to rush home to meet my grandmother so she could drive us to Chicago—or was it St. Louis? You never remember the details, just the emotions—because Taylor’s surgery had some hiccups.

Then there was the unexpected tracheotomy that came out earlier than expected—if that doesn’t tell you the whirlwind of his hospital visits and medical care, I don’t know what will.

All of the times I woke up in the night as a child from my mom banging on my bedroom wall (it was the wall behind her rocking chair) because Taylor was having a seizure and he wasn’t breathing and I had to wake up my dad to help. 

The times when I had to get used to hearing the oxygen machine and heart monitor through the night—his bedroom was across from mine and I never liked sleeping with the door shut, too stuffy. 

It’s even crazier to think of how he was before the spinal fusion.

Back when we thought there was a slim chance of him walking, with assistance, and had feet/leg braces and I would put his feet on mine and we would walk, slowly taking steps around the living room, or dance.

When he could be pushed on a swing—he freaking loved it I might add!

When you couldn’t eat ice cream without him having some too—when he could eat, in general.

When he would roll around on the floor to play with his toys…and then if it was during a Red Wings hockey game and a commercial came on, he’d roll on up close to the tv and “yell” (jabber) at the tv until the game came back on. 

When he could roll over on his own, in general.

Covid-19 has been hell on everyone. The masks, the distancing, the unknown. Honestly, I have more to complain about the politics behind it than anything else because quite frankly, as far as I’m concerned, I’ve witnessed the worst. As far as I’ concerned, when it’s your time, it’s your time.

It hasn’t been Taylor’s time yet despite being prepared for it as a child.

People are not allowed in my parent’s house at the slightest flu or cold symptom because Taylor’s immune system is shot. For a very long time, he had to have daily breathing treatments multiple times a day. My mom’s “job” is to be his caretaker and I can count on one hand the number of dates my parents have gone on in the last decade. Oh yes, decade.

We never know how severe anything is with him, everything is a gamble. The doctors have said he could be the only person in the world with his case—they have no idea how to “treat” it, there is no “treatment”—and long ago made it clear that Taylor would not live a long life. Of course, they’ve always made it sound like he would pass before I became an adult yet here we are, I’m 31 and Taylor is 24(!!!!!!!).  

Growing up with a sibling like Taylor, it puts things in perspective—in many ways. I did not grow up with the assumption that my life was standard or “normal” (ugh, I can’t believe I just used that word, insert eyeroll)—far from it—nor did I ever believe it was quite special. Instead, it gave me an awareness, an ability to accept circumstances.

But not excuses, never excuses. Let’s be real clear about that one.

Do I believe that someone can have extenuating circumstances that can make doing something or achieving something very difficult? Absolutely—see Taylor. However, I also believe that for 99.99999999999999(repeating)% of the population, if they want it bad enough, they can make it happen. We see people overcome impossible circumstances all of the time. 

Though I can accept circumstances, I’m the person who tilts her head and goes, “Ok, but how do we get past that? How do we overcome that?” Taylor has been through hell and back; lives his days in a hospital bed; cannot turn, roll, or move over on his own; is fed through a G-tube; cannot communicate by any “normal” (ugh, again) standard—no sign language or speaking—that no stranger could attempt to immediately interpret; is hooked up to an oxygen and heart monitor with oxygen always nearby; has to have loose phlegm suctioned using a tube that goes down his throat or in his nose; can’t throw up because his esophagus is wrapped; must wear an adult diaper.

I could go on. 

Taylor does not know what it’s like to push your lungs to exertion by choice not by coughing. He’s never had jelly legs from working out. The only wind he’s felt on his face is from a windy day which isn’t the best thing for his health and can lead him into a coughing fit and then being suctioned. 

When I see people complain about not having the time or motivation to work out, it physically pains me. They have all they need to work out—working lungs, working legs, working heart. It’s just a matter of wanting it bad enough to manipulate their time. It’s a matter of putting themselves—their well-being and health—as a great enough priority. And why don’t they want to celebrate what their body can do? This is something I’m unable to grasp.

Broken hearts hurt like hell—at least I get the opportunity to fall in love if I open myself up to it and want to (I do, love you babe, by the way).

Being unemployed and losing my job due to Covid-19 was a very hard hit to take back in March and the unknown freaked me the f*ck out—at least I get the chance to create my own future, to find a career (hello real estate, can’t wait to crush it!).

Finding myself unexpectedly pregnant almost 7 years ago was scary—at least I get to have kids. Even if I’ve been doing the whole single parent thing alone for years, at least I have that option of having a child (and man oh man has motherhood been the best and most thrilling rollercoaster ride of my life).

Too often, people complain about things they mistakenly forget they can control. 

I wake up every day happy that I have a life that I actively choose—even when I’m in a mood or have a debilitating migraine, because I know neither one will last forever. And then I go to bed every night feeling absolutely blessed and amazed that this is my life, even if I had a bad day and it’s not everything I want from life, that this is my life: a man I love beside me, a daughter that drives me crazy but whom I’m crazy about, a house we’re making a home, three annoyingly stubborn but hilarious and protective bulldogs, a new career I can’t wait to dive into, supportive family and friends on my side, and a strong and healthy body that can and does work out regularly (sometimes rigorously).

24 years old, the youngest sibling in my family and who has never gone to school, yet Taylor continues to teach me more about life and living than I think anyone ever could.