Zoe = Life

Jason is out with a friend.  Zoe and I sit on the sofa, like we always do.  We’re snuggled watching a romance on Netflix and eating frozen pizza, my zest to cook has been gone since the 3rd month of the pandemic.  I’m sipping a rhubarb shrub and tonic mock tail, because I’ve decided I’m not drinking for the last year of my 40s.   So far, so good.  I mean my life isn’t stressful at all, this should be a piece of cake, lol.

The girl in the movie has diabetes and is giving herself insulin injections and wears a pump.

What does she have mommy?

I try to explain diabetes in Zoe terms.  She has low blood sugar levels and if she doesn’t get them up she can die.  The pump alarms when she needs medicine.  Oh, and that is the same sort of pump you use!

But I’m not sick anymore, right mommy? 

And I freeze, because there it is.  The sheer innocence and total acceptance than she is just who she is, she is just Zoe.  To her, she is not sick, she is a teenager living her best life.  Or at least that is how she sees it.   She says this as she sits there almost in tears because her arm hurts so bad and is so swollen from a new Remodulin SubQ site that she can’t stop squirming and holds her right arm at an awkward angle.  She says this as we talk about her PH friends who have passed on.  She says this as she readies to go to a camp for medically fragile kids. She says this as she puts her oxygen on every night before bed.  She says this as she pops handfuls of pills every morning and night like they are skittles.

She is Zoe.    She is an almost 14-year-old who collects American Girl books like I did stickers in 2nd grade.  At every thrift store, she scours the shelves and collects them but won’t read them now, she probably can’t read them because there are too many words and too much to follow.  She collects them to take to Knox College so she can read them there.  Because that is where I went to undergrad and she wants to be like mommy.  She says every time she finds one.

She is an almost 14-year-old with a diary that she copies quotes about love into.  She can’t even read some of the quotes because the words are too big, but they contain the word love and that is what matters to her. Her love is pure all-encompassing sort, no exceptions. 

She is an almost 14-year-old who blushes when she talks about her celebrity crush on Shawn Mendes and then talks about when she is older and how she will marry her friend, another PH girl who she has met a few times and chats with on line, because to her marriage is your bestie and a person that gets what you are going through and you love to play dolls with and be silly with and play Roblux with.   They’ll both have a kid she says, without realizing that this isn’t a possibility for her.

She is an almost 14-year-old who knows all the swear words and is obsessed with the song ABCDEFU by Gayle, and yet will never say them aloud in an any conversation because she knows they’re “inappropriate”.   

She is an almost 14-year-old who loves visiting the neighborhood cemetery to visit my childhood bestie and her own great grandparents.  An almost 14-year-old who wants to hear ALL the stories about me growing up and my grandparents and life as it was for her ancestors.  And she remembers them all.  And you will tell her the same story for the 15th time.

She is an almost 14-year-old who will hang over the side of a canyon at 7,000 feet altitude without blinking and swings so high that her feet are as high as the bar the swing hangs from and yet runs inside when she hears or sees fireworks or loud noises.

She is an almost 14-year-old who wants to be a doctor or nurse, or work at Target or be a veterinarian or work at Mod Pizza but struggles to multiply 7×7.

She is the almost 14-year-old who when she sees a couple getting romantic in a movie asks me point blank if Jason and I have sex.  Sometimes, I say.  I’ve never seen you do that, she says.  It’s a private thing, I say.  Hmm, she replies. 

She is an almost 14-year-old who when I took her to the library book sale picked out a graphic novel about a trans boy and the struggles he went through in middle school because we talk about all the things in this house and she is pure love and acceptance and loves stories of people bravely being themselves.

She is an almost 14-year-old girl who is literally not scared of a single animal and will happily pick up a snake, a mouse, a spider and gently place them outside.   Except, for carpenter ants, Jason has taught her to squish those suckers with no remorse.

She is an almost 14-year-old who when we went to Mesa Verde National Park and the Japanese Incarceration camp in Minidoka, Idaho, She took the time to read ALL the plaques about the history of what happened and asked a million questions, because she loves learning about all things historical, but if you ask her to go read for 5 minutes she’ll tell you she is tired and needs a nap.

She is a 14-year-old girl who wants to be so like me in ALL the ways and has been poked and prodded her whole life without batting an eye, but WILL NOT under any circumstances get her ears pierced.   She will however wear the biggest, dangliest clip on earrings, cause, you know, Mommy does.

She is an almost 14-year-old who when we went to plan her birthday party this year, we struggled to think who to invite. She has school peers who are kind and sweet with her and include her at school when asked, but she is complicated.  She is 14 going on maybe 10 socially. She is unaware of social cues and personal space and can’t physically or mentally keep up with her fellow students and it is a lot for kids to process and be around all the time.

She is an almost 14-year-old who is in her element with 5-year-old and 80 year olds.  And with Me, because I treat her like a little adult and we do all the things Mommy does.  

She is an almost 14-year-old who is obsessed with TikTok like they all are because music and dance are her jam.  It is there she feels confident and powerful and successful.  But only with those that she is close to, don’t even think about getting her to say hi to someone she doesn’t know.

She is Magic.  She is pure and unfettered and misunderstood and sometimes lonely.

For years I struggled with thinking that I’m not a great mom for her, I work too much, I’m gone too much, dislike playing, hate legos and slime, suck at having fun.

But then she and I did a road trip with my sister and niece and we hiked, and camped, and piggyback carried Zoe and her oxygen up and down mountain trails and through desert terrain and listened to terrible Kidz Bop music in the car because she asked us to, and played silly road games like count the dead roadkill and drew silly imaginary creatures and giggled and laughed and smiled for 16 days straight and I realized… actually, I’m doing this all right.   Doing it my way and in the way that is right for her.  For her needs, for her life, for her soul, her happiness and her connection.   

I (and I say I because I’m writing this, I do not mean to exclude Jason, who is absolutely an integral part of this) have given Zoe her perfect life.  She lives each day blissfully unaware of her ultimate prognosis, no matter how much we talk about this, she lives each day knowing she is loved by those around her, even if she spends the day mainly alone at school in her own world, not fitting into any mold and not having any peers quite like her. She feels safe in our home, snuggled with us or flying high on her swing.  We don’t hide anything from her, we don’t shy away from hard conversations, we have them all with her, we include her and her opinion in medical choices.  She still feels comfortable coming up to me and whispering Mommy can I talk to you?  She crawls in bed with us at night, because that is her world:  Me, Jason and Zoe.  It just is.   And it is enough.    We can try and explain all we want to her that this isn’t how the world operates, but why?  This is our world, this is enough, these magic few years we get with her.

SO much of my life has changed and turned upside down and isn’t what I thought it would be or ever saw coming, but none of it matters.  Zoe is, Zoe exists because of us and the family and friends that love her and she just is.  She makes everyone that knows her and interacts with her a better person.

I don’t know what life hold for her or me, but in this moment we are just here.  Doing our best for her, making her feel loved and safe and needed and wanted and never ever alone.  Every day of her precious limited life.   What else is there?  Life is too short to not live it our way.  Live it for her.   “Zoe’s rules “as she likes to say

Happy almost 14 my beautiful angel, I love being your mommy more than anything else in the world.    Who would have thought that when we picked your name, before I was even pregnant, before we knew you were you in all your complicated, heartbreaking, miraculous, silly, and scary moments, how prophetic your name would be.  How serendipitous, how much the universe has our backs. 

 You are Zoe.  Zoe means life.  You are life.  You are my life.

Sequins and Syringes

 

If asked to describe me, I think the words most people would say would be determined, calm, thoughtful, colorfully eclectic, energetic, a great mama, a good listener, a great multi tasker, a workaholic and a bit of a thrift and vintage store fashionista. My husband would also add stubborn to this list… But if asked to describe myself RIGHT NOW, here’s what I would say: exhausted, trying to enjoy the little moments but failing much of the time, a bit over scheduled, afraid to just say no to any other projects, and yes still stubborn, energetic, unique, colorful, and determined and DEFINETLY a thrift and vintage store fashionista! I actually sometimes think my unspoken family motto is “Don’t mess with a Strom, we get sh#@ done”!

 

But what happens if I admit that while I appreciate every moment, and person, and twist of fate, and bit of luck, and hour of hard work, and devastating phone call that got me to this point, it can’t cover up forever that that I think I need a break every now and then and that I don’t always have the answers and sometimes I just want to allow myself to break down.    That maybe all those blogs and therapists are books are correct and it IS important to take care of yourself as well as others. This is soooooo hard for me. What happens if I actually take a few moments to write some stories down, talk about the funny moments and the sad ones and attempt to stop my brain from running on overdrive at all hours of the day and night?

 
I don’t know that my story is any more unique than anyone else’s, but it’s my story and it begins to explain how I got to this point, so here’s a bit of background.

 
I grew up on a tiny island off of Seattle, I basically lived the Stranger Things lifestyle (minus the freaky upside down world and disappearing kids). You know, the kind of life you could when you were a kid in the mid 70s and early 80s: you went outside after you did all your chores and played Little House on the Prairie in the woods until it was dinner time; then you sat down with your whole family at 5:30 on the dot and ate some sort of homemade casserole. I ran screaming as far away from the island as I could the second I graduated from high school and off to the corn fields of Illinois and Knox College. There I stumbled into the world of theatre and costuming totally by accident and suddenly found my people. After a few years of grad school in Connecticut I headed back to the west coast and to the sunshine and plastic surgery filled concrete boulevards of Los Angeles. I (while wearing my 90s platform shoes and carrying my old school Thomas guide and my beeper) dug into that city and learned to love it the way you can when you are 25: KCRW music, the sunshine, the fashion, and the friends I soon made. Those mid 20s something women, who were also newly out of school and figuring out who they were and what they wanted from this big bad world, they were my tribe and we got each other through the bad days.

 
Now I’m married to a boy from high school, no we didn’t date in high school ( thank god, high school nerd right here with THE WORST 80s hair), we ran into each other 12 years out of school and hit it off. We live in my grandparents 1920s farmhouse back on that same tiny island off of Seattle (literally up the driveway from where I grew up).   He actually cleans the toilets and separates the laundry correctly before washing it without me even asking,  I totally scored! We have worked hard, been mostly fortunate and really have nothing we should complain about.  I still work in theatre and am the costume director at a theatre that produces all musicals all the time. It is not a job for the faint of heart or those that need frequent naps. I tell myself on a regular basis that 40 hour work weeks are overrated.  The adrenaline driven workaholic in me loves it (most of the time).   I mean, I get paid to shop, I put fake clothes on fake people, I try to keep the drama on the stage and I have an amazing team of craftspeople and designers to work with daily, what could be better?

 
And then…there’s Zoe. My 9 year old little mini me who has a soul full of sunshine, rainbows and pop music and is a bit of an adrenaline junkie herself (oops, wonder where she got that from).   She is at times exactly like me and at times so unlike me and I’m so proud of her for it ( that fearlessness in front of a crowd: that DID NOT come from me). She is THE most amazing and determined human I know; and she doesn’t even know it. If you asked the doctors 9 years ago, she shouldn’t even be here. Given a 25% chance of survival at birth, she has beat the odds again and again and has done it while doing a song and dance in her glitter hip-hop sneakers. I’ll get into more of this in subsequent posts, but for now, all you need to know is that she was born with a Congenital Diaphragmatic Hernia, spent the first 3 months of her life in the NICU, was tube fed until she was two, walked at two and a half, has pretty much been to every department at Seattle Childrens Hospital and is now worth somewhere around $6,000,000 ( I mean she’s actually priceless of course, but the insurance companies would value her somewhere around there). She can wrestle her 02 cannula around like an alligator, thinks of her permanently placed central line and medically attached pump as her conjoined twins, and says the words Pulmonary Hypertension and Remodulin better than she can the words spaghetti and meatballs. She has more hospital paperwork and medical binders than there are old school encyclopedias and she has an IEP the length of the Declaration of Independence AND she doesn’t let any of this stop her . Yeah, she’s kinda the best thing ever!

 
Between Zoe, my job, my husband, an eclectically and lovingly decorated farm house, a million loads of laundry, a 3 hour commute, a sick obsession with baking too many carbohydrates on a day off and an inability to sit still and actually relax, I’m finding myself a little lonely and a little at a loss these days and a lot less brave and feisty than my old 20 something self used to be. My stubbornness? That hasn’t gone anywhere, sigh.

 
Sure, I love being super mom and super boss and super employee and super multi-tasker, and super shopper, I am a Leo after all.  But what happens when all those things collide and all of a sudden you realize that what you really want is a super nap,  an afternoon with your girlfriends, and an hour to yourself.

 
I thought that maybe sharing a few of my thoughts and stories, fashion finds and baking fails, medical traumas and school project disasters, working mama guilts and triumphs might help me navigate this crazy journey I’m on, and just maybe it helps other mamas not feel so alone or overwhelmed in this crazy life.

 
This blog might be right up your alley and relatable if your 2nd grader pretend plays to be “The Boss” with a calendar, a phone, and a sharpie and talks about having to catch a ferry  and orders you around while wearing a sparkly costume. This blog might be for you if you’ve ever had an actor ask you what shampoo you use because your hair smells good and all you can do is look at them blankly, because that good smell is the chlorhexidine in the shampoo on the wall mounted dispenser of the hospital shower and you haven’t been home in 3 weeks are wearing the same outfit for the 3rd day in a row. And maybe this blog is for you if you, like, me, wouldn’t trade a freaking moment of any of this life for anything in the world, but you also would never be caught dead in public in pajama pants  and you know the power a sparkly vintage jacket and a great pair of dark jeans can have on a crappy day when you just can’t take another thing going wrong. And maybe this blog is for you if you too have discovered you’re happily in your mid 40s but you wonder where that brave girl who lived in LA and traveled the world all by herself disappeared to and you find yourself trying to wrap your head around the fact that is actually OK and healthy to cry every now and then and the world won’t fall apart if you do.

 
So here goes, welcome to my sequin and syringe filled life and those that make it sing.

 
P.S. have I mentioned my life is crazy busy, so patience please as I figure out this blogging thing and try to actually fit it into my schedule…

 

XO- Shannin