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

Although Life Is Difficult, It Is Also Beautiful

In our living room hangs a beautiful framed print with a quote by a poet named Rywka Lipszyc, a Jewish teen who was imprisoned at Auschwitz, that says, “Although life is difficult, it is also beautiful”.  My sister and brother-in-law gave it to my husband and I a few years ago for Christmas. I look at it often as I snuggle on our sofa with Zoe. While our struggles in no way compare to what Rywka experienced, they are still true difficulties and they are nothing to brush away and ignore.  

A few days ago we had a school conference for Zoe. It started the way they all do, talking about goals, talking about issues, talking about social skills. It then diverted into talking about the next school year and a new school and how to best help her succeed. But I was tired. It had been a long week at work and for once I opened my mouth and acknowledged the (pink glittery) elephant in the room that we were all ignoring. I gave voice to the thoughts that stream through my head every moment of every day but which I never say out loud, and I did it in a truly un-glamourous, undignified way, with messy mascara tears and a high pitched voice. I don’t actually remember much of what I said, I was too emotional and invested, but I was honest. The gist was this, why the hell are we pushing Zoe so hard scholastically to fit a mold, when she can’t actually keep up with her peers and will only get further and further behind as the grades progress? Why are we making her miserable at school to the point she bursts into tears when we mention multiplication or really any math? Why are we trying to make her fit a “typical” mold when, in all honesty, she is never going to go to a regular college? She will never take the GRE or go to Knox College like I did (no matter how much she talks about it). If she only has a few years on this earth, can’t we find an academic level she feels good about and that encourages her to learn, but doesn’t cause her to tailspin into depression and self-doubt and self-hate? Why are we taking this beautiful child and trying to make her fit a mold that doesn’t work for her? 

Zoe is an interesting study in “typical”. When you first meet her she seems “normal” (God, I hate that word!). She engages, talks, participates. But soon you realize that she acts fairly young for her age. She is naive in a beautiful way. She is kind and sweet and just wants to be your friend. She loves playing doctor and school and family. She loves books, but struggles to read anywhere near her grade level. She REALLY struggles with math concepts and retention. She is interested in things that kids several years younger than her usually like. She does great with younger kids and adults, because the younger kids relate and the adults take the time to understand her and play along. She can’t focus for long periods of time and she is often easily distracted. You top all this with her physical limitations and medical needs and there are not too many kids like her (and certainly no kids like her in our school district). 

Not that I want to put any more labels or limits or restrictions on where she might climb to in this life because we can never really know. Someday there might be a cure for Pulmonary Hypertension. Someday Zoe’s math and science skills might all click and she might become that doctor/ nurse she talks about being. Someday Zoe might be giving TED talks about her struggles as a kid and how she overcame all her obstacles. I suppose we never know what will happen someday. But right now we are dealing with the difficult reality of NOW.

All this to say that, as much as I try to always face life with a positive attitude and a go-getter spirit, life can be just as difficult (sometimes more so) as it is beautiful. Difficulty and beauty take a toll on me. For every moment I have of over achieving, I have two moments of self-doubt and worry about Zoe’s future. I am the worst (or possibly the best, depending on how you look at it) at putting on a false front and pretending like everything is okay. I struggle with giving myself time to deal with things that really are game changers. Last year alone, Zoe had two heart surgery procedures and changed the way she receives her Pulmonary Hypertension medicine. While the surgeries went better than we could have ever expected, her new meds cause her excruciating pain one week out of every month. This has become our new normal. The first time she endured the painful reaction to her meds, Zoe and I just sat in the kitchen, held each other tight, and cried for hours. It freaking sucked. Not being able to help your child is the worst feeling in the world. You combine all those medical needs with a day job that takes everything I have and it leaves very little time for me to process what happens in the everyday.   

But, since it is a new decade, I thought I’d try and put some perspective on my thoughts. So, in no particular order, here are twenty (20) difficult and twenty (20) beautifully true statements for me as I start 2020. 

First the difficult truths (because no one wants to end on that note)…

1.       Life is hard and sometimes it’s all too much and too busy and too overwhelming.

2.       I feel empathy alongside something like outrage when the world goes to pieces over the death of a celebrity and yet I can list off fifteen children under the age of eighteen who passed away from hideous diseases in the past year and as much as I don’t like to admit it, my own daughter will likely be one of them one day.

3.       If the world cared to love and listen a bit more than they cared to react and incite and judge, we could move mountains.

4.       I struggle with how to love wholeheartedly people who believe in the current political policies.

5.       Occasionally I think I would rather work in a flower shop again than in theatre. The thought of a Monday- Friday/ 9-5 job has its appeal on a 90-hour tech week.

6.       Oftentimes, I give my job way more than I give my family and every time I do it, I hear life tick-tocking quickly by.

7.       Friendships are hard to maintain and I am often lonely. But lonelier still might be my daughter who struggles to find her place in the world and around her peers.

8.      Watching your child in pain is the worst feeling ever.

9.    I will vote for whatever Democrat is the presidential nominee in 2020 because I can’t even with the past 4 years.

10.   I keep too many feelings buried just below a turbulent and silent surface and I need to learn to share them with my loved ones.

11.   School conferences are brutal when you have a less than “typical” kid 

12.   There is more to life than good grades and climbing the career ladder to success. Also, the term “highly capable” in a school environment makes we want to scream like that guy in the Edvard Munch painting.

13.   Brene Brown was not wrong when she wrote about a “midlife unraveling”. It’s real y’all. 

14.   Admitting I can’t do it all is terrifying for this Type A/ Enneagram 3/ People pleaser person.

15.   Sometimes a smile and an “I’m good,” are the farthest thing from the truth.

16.   Faith is hard. Sometimes what you were raised to believe doesn’t make sense but neither does anything else you’ve tried. Sometimes shitty things happen to good people.  

17.   Sometimes I just want to run away for a week and sit in a hotel overlooking the beach by myself and just write and read and think. No family, no friends, no noise, just me and my thoughts.

18.    The song “Smiling” from the Broadway musical Jagged Little Pill. Just listen to it already, it might be the new anthem of us educated, white, middle age, middle class moms.    

19.  Long division is an unnecessary life skill. Calculators are your friend.

20.  The podcast “Terrible Thanks for Asking”. You think your life is difficult? Listen to these stores and then listen to the tales of survival and moving forward with grief. We are all in this world together. 

These things are also truly beautiful…

 1.       Paris. It is truly as gorgeous as all those pictures you’ve seen and those purple sunsets are magic. Oh, and that flea market? There is not a better one anywhere in the world!

2.       My daughter. She is a freaking miracle!

3.       Emmylou Harris. She makes everything better (at least temporarily.)

4.      Peonies and peacock feathers and anything by Gustav Klimt.  

5.     Seeing two of my dear friends, Michele and Sara , become published authors this past year!

6.       Binging shows on Netflix in another language. You should watch these TV shows in this order: Bonfire of Destiny (French), Gran Hotel (Spanish), Cable Girls (Spanish), Hache (Spanish), Palm Trees in the Snow (Spanish.)

7.       These books – they are magic and you should read them all in no particular order: The Night Circus (Erin Morganstern), The Brothers K (David James Duncan), Outlander (Diana Gabaldon), The Time in Between (Maria Duenas), and The Shadow of the Wind (Carlos Ruiz Zafon.)

8.     The graphic novel “Ghosts” by Raina Telgemeier. It’s a story about a girl with medical issues who has to use oxygen daily. The smile on Zoe’s face when she reads about someone like her is priceless. 

 9.    Saturated, hot colors and creatively curated collections of odd things (vintage baby doll heads, the letter “Z”, vintage sewing accessories.) I love all things baroque floral, paisley, and art nouveau and I can’t abide an undecorated white wall.

10.   The podcast “Terrible Thanks for Asking.” Yes, this is also on the ‘difficult truths’ list but it’s also here because it will make you feel all the feels. You will laugh, cry, hurt, and be healed. All in one hour.

11.   The idea that perhaps all that really matters in this life is that you are loved, you are happy, and you are content with your accomplishments.

12.   Pink bubble baths with your kiddo while sharing all the secrets of your souls. 

13.   Amy’s Bakery in Hell’s Kitchen. They have the best almond croissants EVER!

14.   The musicals Jagged Little Pill, Moulin Rouge (I am a bohemian at heart after all), Natasha Pierre and the Great Comet of 1812, and Hadestown. Truth, Beauty, Love, Freedom!

15.   Blackberry pie. It is the best breakfast food ever (and bacon; I love bacon).

16.   Acupuncture. It makes moving in your mid 40s actually bearable. 

17.   A powder dip manicure. I feel like a girly-girl with my perfectly manicured, never chipped nails. 

18.    My fellow parents of special needs kids who soldier along silently and without asking for pity. I am grateful we can share our pain, anger, and fears in a safe, supportive space.

19.  Our farmhouse at Christmas. It’s aglow in pink and red and gold lights and it is truly magical, especially when it’s snowing.

20.  The fact that my favorite glass votive color is called “Diva” and my favorite nail polish is called “Destiny”. Apparently I’m a diva with a destiny! 

Be kind y’all. You never know what struggles people are dealing with.