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

Double Digits

 

I never thought we would get here or at least I never thought we would get here and still be standing and smiling. I’m what might you call a realistic optimist. I have never thought things will always work out perfectly for me. I am perfectly aware that I’m not guaranteed anything, sometime life just doesn’t work the way you want it to no matter what you think or do or how hard you pray. That was pretty much my take on the chances of Zoe coming home from the hospital after she was diagnosed at twenty weeks in utero with a Congenital Diaphragmatic Hernia in 2008.

 
But here we are, one day from her turning ten years old, and a fairly stable ten at that.
Zoe was lucky to get ten seconds of life, let alone ten minutes, hours, days, weeks, months and now ten years. I don’t know why we were lucky or blessed or fortunate or whatever you want to call it, but I’m grateful for it every single day. I certainly didn’t pray harder or wish harder or beg more or cry more than any other mom. Maybe, and only maybe, I researched a bit more, or fought a bit harder, or was stubborn longer than some, but I don’t even think that is the case because there is no trying too hard when your little one is fighting for every breath. I struggle with the terms blessed or lucky or fortunate or any other of those other loaded words that try to explain why Zoe is here with us. I didn’t do anything more than any other parent did. There are plenty of parents that have more faith, parents that have no faith, parents that needed a child more, parents that didn’t but stepped up anyways, but regardless and for whatever reason, we got to keep her. She came home with us and I never forget that for every Zoe there is another precious baby that was born with a Congenital Diaphragmatic Hernia that didn’t come home.

 
Sometime the doubt creeps in and I think we don’t deserve her because I don’t have as much faith as other parents do. Sometimes I struggle with the idea that I’m not grateful enough or that I don’t appreciate Zoe enough, or that I spend too much time not focused on her and I’m wasting valuable time that will someday disappear.  That is actually probably my biggest fear. Sometimes I think that one day, perhaps sooner than later, she will be gone and I will never forgive myself for not spending every second with her. All of this is a bit melodramatic I know, but the thoughts still linger.

 
I often wonder with what If I believed MORE or what if I had more faith? What would happen if I was as zealous as some other parents? Could I pray hard enough to fix her? Would she be cured? Would she live until eight-five? I realize none of these guarantee are possible, but I do sometimes wrestle with the feeling that if I just had more faith, she might get a bit better, that she would be “healthy”. It’s not that I don’t have faith, it’s just not very directed. I have faith that life will happen, ready or not, and it is my job as one of Zoe’s parents to make sure she is getting the best help and support she can. I have faith that I will face each day as bravely and with as much grace as I can muster. I have faith that my husband and family and friends will be there for us on the days I waver. I have faith that I will always be strong for Zoe when she needs me to be, and I have faith that she will always know she is loved and valued and cherished.

 
I’m envious at times of people with blind faith, I have never really had it. It’s not that I don’t believe in anything, I absolutely do believe in a power of some sort that can work miracles, a force that exists in the universe that is there when we need it or when we chose to listen to it.  I believe in the power of hope and in the strength of children.  I believe that love is what maters.  I just don’t happen to call that power anything in particular and I have never been able to talk to it or about it in any sort of focused way. I try, when things are awful or scary, but I can’t name it. I end up instead, pouring all my love and attention and hope into Zoe (or manically organizing my house) which is not a bad place to put all that energy either.

 
When we were in the NICU, there was another family whose child was also born with a CDH a day after Zoe. The two of those precious girls occupied the entire back of that NICU. Two tiny girls hooked to a million tubes and ventilators and at least eight medical staff between them. My husband and I stood by Zoe’s bedside and touched her hand like a benediction, we closed our eyes and whispered into the stale hospital air, we talked with the medical staff and we did what they told us to do. We asked people to pray for Zoe while we struggled with praying ourselves. This other family was all about prayer and Jesus. They  declined doctors suggestions of next steps for their child because they believed that their God would care for their daughter, they left it all up to God. Part of me was a bit awestruck with this idea, and the other part of me was horrified. To me, God working was us being in the right hospital at the right time with all these amazing machines and medical staff to care for our precious girl. That and the prayers and love that our families and loved ones sent our direction, that was how God worked for me. That other little girl progressed quicker than Zoe did, she left the NICU before Zoe did, she seemed to be healing much quicker. I remember thinking, maybe those parents were on to something that I just couldn’t get my brain and heart and soul to wrap around. What I found out two years after our NICU stint, was that their daughter passed away at around sixteen months old. Faith is hard y’all. It all seems like such a crap shoot sometimes and we as parents are completely and entirely responsible to make decisions to the best of our ability and to do it in the way that is most true to us, to what works for our families. There is no one right or wrong way to face life. We might have to wrestle with the consequences down the road, but for right now, we only need to do what is best for our child and love them unconditionally.

 
I can’t even begin to thank everyone who prayed and believed and sent love and healing thoughts to Zoe over the years. I truly believe she is here because of all of you, well you all and the amazing medical staff she had at Legacy Emanuel and now at Seattle Children’s Hospital, and all the love and energy and prayers you put into the universe on her behalf. I’ll never know how or why, but we did it, we made it to ten! I mean, I’m not so sure I had much to do with it , but you know what I mean. So what now? Well, in honor of those monumental double digits here are a few lists of top tens.

 

 

Top ten favorite things about Zoe:
1.   She always wants to snuggle with me and has an innate ability to curl up into a           pretzel to wedge every appendage into an armpit or the back of your knee.
2.   She is kind and observant and looks out for the underdog.
3.   She doesn’t let her disabilities stop her from anything.
4.    She is phased by nothing ( except fireworks).
5.    She LOVES to dance and sing, it is in her soul.
6.    She is all about family, real, imaginary, extended.
7.    She is brave and fearless.
8.   She still requests that I call her Buggy.
9.    She makes me laugh more than anyone I know.
10.  She lives life like it should be lived, joyfully and fully.

 

 

Top ten Zoe memories from the past 10 years:
1.    Holding her in my arms for the first time at thirty days old
2.    That rainbow in the sky when we were driving up from Portland and I felt a sense of calm for the first time since she was diagnose ( see, I’m listening to the power of the universe).
3.    The look of sheer pride on her face when she finished her first ballet recital.
4.    The time she defined the word “frequently” on a school paper by using it in the sentence ” I smell Velvet’s kitty litter frequently.”
5.    The first time she walked in Physical Therapy without her walker and her therapists jaws all dropped open in disbelief.
6.    The other night when we laid in bed and she asked me to tell stories about when I was a kid and asked THE BEST questions.
7.    Pretty much any time she says she wants to match what I’m wearing and we head out into the world looking like twinsies.
8.    The time she and Eva were walking on the beach holding hands and wearing matching rainbow shirts while Eva carried her oxygen.
9.    The look she gave her Great Baba on Valentines Day 2016.
10.  Impromptu 2 AM dance parties while eating huge pieces of chocolate cake when I get home from a long day of work even though it’s a school night.

 

 

Top ten things I hope the next ten years bring for Zoe:
1.    Friends who love her and protect her and cherish her.
2.    A continued confidence in herself despite her limitations.
3.    Happiness and the ability to talk about what is bothering her when she’s sad.
4.    Questions that lead to thoughtful conversations and adventures and discoveries.
5.    dancing and music.
6.    More laughter and snuggles.
7.    Courage to face the tough decisions that will have to be made.
8.    More baking and crafting and thrifting with me.
9.    More inspiring stories that encourage others.
10.  More adventures and dreams fulfilled.

 

 

There is absolutely no earthly reason Zoe should get to celebrate this milestone birthday, but here she is planning a Harry Potter themed birthday party and geeking out over being a big kid! Part of me wants to freak out and stop time and I start to hyperventilate when I think that we made it this far, and part of me just says “Bring it on next ten years!”

 
So here’s to more mayhem, more laughs, more tears, more tough conversations, more heartbreak, more milestones, more steps backwards, more sleepless nights and most importantly more hugs and snuggles, water balloon fights and more truth telling.
And here is to all of you, our families, our friends, our hospital families, our fellow parents of medically fragile children. Thank you for praying for us, crying with us, smiling with us. Thank you for your faith when ours faltered. Thank you for lending your time when we didn’t have enough. Thank you for teaching your children to be accepting and inclusive of those different and less abled than themselves. Thank you for your patience as we cancel yet another holiday or miss the beginning of school due to a hospital stay. Thank you for your hugs as we struggle to deal with our roller coaster of fears and joys. Thank you for your love and prayers. Thank you for every minute of the last ten years, and as we celebrate this monumental milestone, please know that I will never forget the beautiful children we have met on our journey that are no longer with us. To those parents and siblings I send all the love and hugs and peace of the universe.

 

 

Happy 10th birthday , Buggy!
XO, Mommy