Archive for the ‘Life’ Category

9 to 5 (Dolly Parton)
October 14, 2021


My company recently offered a peer mentorship program designed to help us to clarify our individual purpose(s), incite conversations with peers, and to create actions that will help us become more engaged and feel more support in the workplace. During the course of a year we are paired with four peer level executives from a different branches or divisions of the company, each for a three month period, where we meet bi-monthly for about an hour and talk and do different exercises that are set by the program, but directed by our responses.

I concluded by second meeting today. My peer mentor is also a senior VP, who works in Toronto and leads the IT team worldwide – a vastly different position than mine. I am more of a lone wolf in terms of my daily work. While much of my efforts support different teams within the company, I more often than not work on my own direction and do not have a support staff. I’ve been working in my business for the better part of twenty five years and with this company for over ten of those. I’m trusted, respected, and valued.

Following each mentorship meeting, we are given a directive to focus on or accomplish before our next meeting. It might be an action or a change of process or implementation of a new idea. Regardless of the mode, I’m finding them challenging in the best way. They lead me to think more deeply about my day to day work and the impact it has on both my team and the company as a whole. They cause me to look more critically at routines I’ve fallen into over the years. It’s easy to just get the job done to maintain status quo but I’m realizing that it’s crucial to strive for more.

All in a day’s work!

I’m generally happy in my position, and blessed to be working for a company I respect, with people I genuinely regard and enjoy. I hope to remain here for as long as they’ll have me. They’re supportive and understanding of my family needs (to the degree that I was able to work from Cole’s hospital room for a month and half with their full backing). I love their policies regarding community outreach, diversity and inclusion, and environmental issues. I am motivated by the opportunities, like this peer mentoring program, we’re given to help us all to rise up and be our best selves both at work, and outside of work.

I’d like to grow to a point where I can test out my managerial skills. I like the idea of delegating and sharing ideas with a team and I’ve come to realize that it’s a direction I want to move myself toward. Learning more about what it’s like to have a team and to manage, engage and inspire a team excites me. I’m not exactly sure what that looks like for me specifically but the mentorship conversations I’ve had thus far lead me to want to delve more into how I can create that opportunity. It’s helping me to recognize things in myself that I ignore or that lay dormant.

Not bad for two sessions! I’m really looking forward to seeing where the year of this takes me. I have three other mentors to connect and learn from as well several more sessions with my current peer mentor, from whom I’m already greatly inspired by.

Better Man (Pearl Jam)
October 11, 2021

I recently watched the limited Netflix series “Maid”. While I thoroughly enjoyed the incredibly well told, well acted series and recognize the importance of stories like this being told, getting a broad audience, and inciting discussion, it also brought up a part of my own story that I generally keep tucked away because it’s wrought with hurt, shame and disappointment in my younger self. I saw my younger self in the main character, Alex, in so many ways.

For much of my life I’ve struggled with self-esteem issues. Like many of us, my worst behaviors stem from my self doubt and insecurities. As a pre-teen and teen I had voices telling me I was fat, ugly, stupid and weird. Part of me believed this and part of me wavered. I mistakenly took the attention of boys as validation that I was lovable but boys who kissed you weren’t all looking for love or for girlfriends, so the attention that initially rose me up, plummeted me back to those voices telling me I wasn’t good enough.

My first boyfriend broke up with me because I cut my long hair short (!) as I delved more into the punk rock scene, leaving me uncertain of what I had ever meant to him. My next boyfriend, who made me feel loved and seen, cheated on me during a school ski trip we were on together, breaking my young heart and leaving me feeling utterly undesirable. And so on. None of it’s earth-shattering or truly devastating but it played against my fragile self-esteem and we were not openly discussing self-esteem or mental health in the early eighties. We weren’t seeing therapists or telling our parents or friends how we felt about ourselves.

My outer self had good friends, lots of interests and did pretty well in school. My inner self had self-doubt, insecurities and self-loathing, but no one really knew that part of me. That part of me made bad decisions, hoping for validation. I am certain I was not that different from most teenagers, and we grew up, became more accepting and understanding of ourselves and moved into adulthood relatively unscathed. I had a few other significant relationships that were happy and healthy and ended without impact, leaving the friendship in tact.

Until in my late 20’s when I met him. He made me feel like I was the most amazing woman he’d ever met. I felt loved, wanted, needed and safe. We quickly fell into an intense relationship, moving into together (him into my house) and melding our lives together. He had a young child from a previous relationship, who spent time with us. It felt overwhelming but (at first) in a good way.

This is me in the thick of it – what you don’t see is him next to me (I cut him out) or the hopelessness I felt most of the time.

And then it didn’t. As I became more comfortable with the relationship and all that came with it, the more the praise, appreciation and kindness were pulled away, making way for him to take control of me, of my money (I worked a steady, salaried job and he was a day worker who started to prefer not to work unless it was a job that would take him out of town for a few days), my movement (it got so that I rarely saw my friends, only socializing with him or with his chosen friends with him), and my self-esteem (instead of compliments, he started emphasizing my flaws and insecurities). He threatened to leave me as he drained my bank account to support his social life, child and more . We shared my car so he’d drop me off and pick me up from work, often leaving me waiting for him to return (pre-cell phones) and without a car during weekends. He assured me no one else would ever want me, so I should be happy that he did. He blamed me for his inability find work or hold jobs. When he did work “away” jobs, he cheated on me. When I felt my lowest, he’d give me crumbs to keep me holding on to him. I was trapped both by him and by my own destruct from the way he broke my confidence, value and soul.

I was no longer financially independent, and started carrying debt to support us. We lived in my house, so I didn’t feel like I could leave and I didn’t feel like I could get him to willingly leave. I didn’t have access to my car most of the time, often leaving me feeling stranded. I didn’t see my friends or family much and felt too ashamed to talk to about what was happening to me. He worked every insecurity I ever had and broke me. I put on a good face. I showed up to work every day, smiled like a good girl and played nicely.

Sadly, no one seemed to notice. No one recognized the signs. The people most likely to notice didn’t see me enough or I avoided the conversation. I was so devastated by where my life had landed and felt shame and guilt for having brought it on myself. I invited him! I welcomed him! Most of the people I was around those days were his friends, who could care less how I was treated or how I felt. I supported their drinking and late nights. I fed them and provided a place to crash when they had no where else to go. I took care of his son when he couldn’t be bothered. I never felt more alone than when I was his girlfriend.

I didn’t notice it happening until I was well into the throes of his abuse. The changes from doting boyfriend to abusive boyfriend are subtle at first. The truth is, I wouldn’t have called it abuse back then. He never physically hurt me. Towards the end, I sensed that was coming though. His anger eventually lead him to throw things past my cowering body, or punch walls behind my head. I knew it would happen and somewhere in my mind I had drawn the line at that. I finally mustered the strength to break up with him. I left his stuff outside when was on a job and changed the locks. It worked for a bit. Like most people who suffer abuse of any sort, I returned to scene of the crime.

He wooed me briefly with pleas for forgiveness and showers of love and devotion. We dated again for a short time, but the abusive tendencies returned (as I should have known) pretty quickly and I had the strength to end it for good. I’m proud to say that I’ve never laid on eyes on him again.

It took a lot of time for me to find myself after that. I had no idea who I was anymore outside of that relationship. Dating sounded terrifying. I needed to get to a place where I could trust myself to make good choices. I threw myself into work and built a solid career that involved a lot of international travel, both of which help me build new confidence, acceptance and value to my life. I made new friends who had nothing to do with my life with him, who helped me to see myself as a worthy, bright, cared for and caring friend. I wrote a lot to sort through how I felt about what I’d been through and tried to understand how I let it happen. I worked to get my finances straightened out and to just enjoy my life again. To breathe again.

I am blessed that this experience was just a chapter in my book of life. It wasn’t a pattern. It was an eye-opening, devastating chapter that led me to make some needed changes, to work to better understand myself and to find acceptance of myself. I’ve made a lot of strides in doing so, but I recognize that I will always be a work in progress, and that’s okay. I still falter, am occasionally reactive out of insecurity, and sometimes suffer from self-doubt, but I see it now and I make effort to be gentler and kinder to myself and to others, and try to cop to my bad behavior.

I was blessed to meet my husband when I was a much healthier self in my early thirties. We’ve been together for almost 24 years (married for almost 22). He sees me for all that I am, the good, the bad and everything in between. We each carry our own baggage, and understand that we have to work together to keep our relationship thriving. It’s worth every effort even though it does shine light on things neither of us is proud of, but in some ways that’s what keeps us both in balance, as a couple, and as individuals.

Don’t Stop Me Now (Queen)
October 4, 2021

One of Cole’s new dance routines at iDance is to Queen’s Don’t Stop Me Now. It’s one of my favorite songs to dance around the house to and to belt out in the car when no one (or only Cole) is listening and as teen was part of my “dancing with myself” repertoire (along with a few other songs on the Jazz album). But I think that song also has served as a mantra of sorts for me since I first heard it in 1978. I listened to that album over and over again and reveled in the power of Fat Bottomed Girls (which I believed myself to be), the teasing sexuality of Let Me Entertain You (which I admittedly have always thought would be a perfect strip tease song), the longing and romanticism of Jealousy, Dreamer’s Ball and Seven Days, and the anthemic positivity of If You Can’t Beat Them and Don’t Stop Me Now. I still love to listen to that album in order, track by track.

So watching Cole learn a routine to Don’t Stop Me Now of course put the song in my head all day and took me back to my old bedroom where I’d make up dramatic jazzy dances to it, proclaiming my fourteen year old potential and worthiness. I channeled my inner Freddie Mercury, hoping that if I could muster just a fraction of his seemingly boundless confidence and spirit, I could push through my insecurities and teenage angst and survive middle school. The funny thing is that I still find that song to be motivating, and I still find myself wanting to dance (yes, like no one is watching) to it and experience the freedom and joy it brought to me as a kid. I still find the song makes me want to break out of my head and follow my heart and dreams.

My hope is that it inspires Cole to do the same.

I’ve Been Everywhere Man (Johnny Cash)
October 1, 2021

Though it’s still warm, okay hot, here in Southern California, there are glimpses of fall starting to sneak in. Fall is my favorite season, and admittedly autumn in my neighborhood is not as transitional as it is in other parts of the country, but being a sweater girl (to the degree that I was nicknamed “Sweater” when I was a teen because I loved to wear vintage beaded cardigans and loopy mohairs with my pegged Levis or pencil skirts), I’m donning cozy sweaters the moment our temperatures drop below 75 degrees.

The deluge of advertisements, recipe suggestions and marketing emails that proliferate my computer, billboards and storefronts too indicate that fall is upon us. Halloween, Thanksgiving and the Winter holidays are already filling space on shelves and in our thoughts. The “what are you doing for XX holiday?” queries and plans abound. The pool now gets cold overnight despite the still hot days – the nights are cooling significantly. We’re contemplating our last official swim this weekend.

Enjoying aquatic therapy at Stepping Stones

With this being Cole’s last Saturday with aquatic therapy, it’s now time to come up with weekend outings and distractions for him. For the past four months his Saturdays had him at iDance in the mornings, home for a quick lunch, and then back out to aquatic therapy. He arrives home in the late afternoon, happily exhausted, wanting Sundays to be pretty lazy and calm. Maybe a swim with us, or a long, leisurely drive, or meeting family for breakfast, and then enjoying the rest of his Sunday watching YouTube videos or favorite TV. He is a guy who relishes a day to himself after a long week – Morrisey’s Spent the Day in Bed is his jam…

Having a bit more of the weekend back open means that he’ll need to fill more of it. While I’m happy to let him have his day, I don’t like having two days of the leisurely screen time. With the world opening up a bit more I’m already making plans to do more outings with him (and when it works out, with him and friends because that is definitely his preference). He received a membership for two to LACMA for his birthday making visits to see their exhibits a no-brainer. I’d also like to get back to doing beach boardwalk strolls in Santa Monica – we did them frequently during the throes of quarantining because it felt safe and was calming to be by the ocean, explore some farmer’s markets and farms, take advantage of some of the holiday events like the drive through Christmas lights festival we did last year, and visit other museums in addition to LACMA. Getting Cole on board is not always easy but I’m determined to get him out and about on weekends.

With the weather cooling, exploring outdoors becomes more inviting as well. Cole’s never been to Joshua Tree or Big Sur. If things feel safe to explore beyond our area, I feel like day or overnight trips would make for grand weekend fun. We, as a family, don’t often do short trips but I think that having been cooped up for these past eighteen plus months, the idea sounds heavenly. I don’t feel ready for international travel yet but inching out of our comfort zone is a good start. Baby steps…

Back in the Saddle Again (Aerosmith)
September 28, 2021

It’s me…back after nearly two years. I’m getting back to writing!

I left off with Cole still literally hanging out, in traction, waiting for his spinal fusion surgery at CHLA. We ended up there for forty seven days. Yes, you read that correctly – 47 days! And then due to some complications from pain relievers that caused internal bleeding, we were back for another several days after being home for just a few. The surgery itself was hugely successful. Cole’s spine is straight and long, his organs no longer smushed up into one side of his body, and he gained almost seven inches in stature. The surgery also improved his head control so his access to his eye-gaze Tobii communication device is markedly better and he’s gained confidence from his face front, sitting tall presentation.

We found ourselves settling back at home and into our usual work/school/life routine for about six weeks before Covid19 struck. Dan and I both started working from home exclusively March 18, 2020 and Cole stopped school right after that. On one hand, we’d just spent a month and half together in a single hospital room so being quarantined to our house with a yard and neighborhood to wander felt fairly luxurious. We adapted our days to incorporate Cole’s on-line school needs as well as his entertainment and personal needs. Cole graduated from high school, completing the year on Zoom and having a drive-by ceremony. We created two offices spaces within the confines of our small home and settled into the new (covid) normal.

Oh, and we adopted two kitty brothers who arrived the night of March 17, 2020. They were about a year and half old and I had fallen madly in love with them on a foster site I found whilst we were in the hospital. I’d been keeping an eye on them since late December 2019, and happily they were still available to adopt in March! The foster would only allow them to be adopted together because they were completely devoted to one another (still are). The boys were part of a litter she called the “tea kitties” – each kitten in the litter was named after a tea. Our boys are Oolong and Earl Grey. We kept their names because they’d had them for a year and half already and it felt mean to rename them but had we done so they’d have been Nigel and Reg, respectively.

At this juncture late in September 2021, Cole’s been back to in-person school at a “CTC” – career transition campus – a post high school program sponsored by the LAUSD. The program provides some continued education, life skills, and for those who are able, work training programs in a variety of different fields such as data input, baking, retail, silk screening, car detailing, farming, and more. Cole spent his first year on zoom and is now happily back to riding the bus to and from school, with peers and pals, and enjoying the program. He’s back at iDance and just finishing up two sessions of his summer favorite, aquatic therapy. Dan and I are both still working from home, through in October I’ll start going in a couple of days a week as our offices slowly start to reopen.

It astonishes me how adaptable Cole has been through all of these challenges he’s faced these past couple of years. There have certainly been some low points because being stuck in hospital and then at home with just us would be hard on any kid, any teen, but he got through it all without serious issues. The one thing he implemented, as a measure of self-salvation I suspect, is that he no longer willingly will join us in the living room or dining room to eat or watch TV or hangout. His bedroom became, and continues to be, his sanctuary. He enjoyed going on walks, drives, and visits with us during the worst of the quarantine, and he swam with us and enjoyed having friends over when it started to feel safe to entertain outside in the backyard, but (if I’m honest) like many teenagers, he really didn’t want to hang with us anymore than necessary and for a guy who has little opportunity to exercise his independence, we respect his decision. It saddens me sometimes but I do recall wanting my alone time as a teen so I do understand.

A big impetus of starting to write again is that I find I live in my head and these past eighteen months have not helped that and in fact have made it worse. Writing has always been the best way for me to purge my overloaded brain from everything it’s striving to sort out and process and create. Writing helps to keep me nimble. So, I’m back. No one may be reading (yet) but the simple exercise of writing is enough for me. I actually have a couple of writing projects I’d like to attempt so resuming a daily or weekly practice of writing will be a useful practice in creating as well as the brain purge. I feel positive and excited about what lies ahead!

DINNER BELL (They Might Be Giants)
January 2, 2020

Since we’re still stuck in the hospital in somewhat of a holding pattern, waiting for the surgery date to arrive, I’ve been doing a lot of daydreaming and plotting.  Naturally, inspired by the new year, new decade, and in part by the outpouring of support from all walks of my life, I’ve been trying to come up with a way to bring my worlds together and to be able to spend real time with people.  Ways to show my appreciation and gratitude for their care.

I love to entertain and I love evenings spent enjoying food, drink, lively conversation and games.  There’s a Barefoot Contessa episode where she’s in Paris and one of the expat chefs she cooks with explains that he and his wife started hosting weekly dinner parties where they welcomed strangers from their neighborhood as a way to get to meet people.  I love the idea.

We actually started doing monthly summer dinners with a few neighbors last year that have been such a fun way to connect with the people around us.  When I’ve mentioned this to other friends, the reaction is always one of surprise.  I’ve found that quite a lot of people don’t really know their neighbors anymore, and if even they know them, they don’t socialize with them.  I’ve really loved our dinners and look forward to this summer when we get back to it!

While I’ve been here contemplating things I’d like to do in the new year, not resolutions, mostly actions, my husband shared a Facebook post from a colleague who lives in New Jersey (his company welcomes people working remotely so their staff are all over the country, and a couple even outside the country).  She and her husband starting hosting monthly pasta dinners when they purchased their home as way to entertain, meet new people, see existing friends, and make use of their new home.  I loved it and wanted to know more about how they came to do this.  Turns out they were inspired by a blog post on Serious Eats, where a couple decided to do a weekly Friday Night Meatballs dinner.

The point of the evenings is to bring people together not to impress everyone with your culinary prowess or to spend a week preparing for these evenings.  It’s about keeping things simple, sharing your space and time connecting with people in your life and connecting people in your life with each other.  The mix of guests can be forever changing even if the meal itself remains the same, dinner after dinner.  Evenings can end up with lively games and other fun simple entertainment – impromptu karaoke anyone?

I’m dreaming of being home and figuring out how this idea can find its way into our routine.  One of the greatest gifts of Cole’s spinal surgery journey has been the recognition that we have a big community of people who care about us.  I really want to welcome them into our real life and implementing a regular dinner night seems like a perfect way to do just that.  I can’t wait to see who will actually join us!  I really hope we have a revolving mix of people open to the magic of togetherness!

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LET’S START THE NEW YEAR RIGHT (Bing Crosby)
December 30, 2019

It’s hard to believe that 2019 is coming to an end – not only 2019 but the decade.  It’s hard not to have this past month define much of 2019, but the reality is there have been a lot of things that happened in 2019 that are to be celebrated.  Perhaps looking back, our current hospital adventures will be celebrated too.  At the very least, our survival of them!

One of the things I’ve worked on this past decade is to be more open to asking for and accepting help.  Somewhere in the last few years I started going to a special needs moms support group, which started opening me up to exposing myself.  I also have a couple of dear friends who encourage the same of me and it’s transforming my psyche.  I’m definitely a work in progress and will probably always be such but learning to be open to change and vulnerability have impacted my life in more ways than just as a mom.

I’m not good at resolutions so my interest in the start of a new year doesn’t really lie in committing myself to do this or improve that.  The usual things like devoting more time to wellness (fitness/healthy eating/sleeping), finding balance in life, being my best self are ongoing endeavors.  A couple of years ago I challenged myself (along with a friend) to try to do new or different things throughout the year.  That too is something I hope to continue to explore.  I was gifted a guitar for Christmas this year so learning to play is on the agenda – I have some lofty songs I hope to eventually master!  I also want to challenge myself to write more – whether it’s this blog, short stories or even letters to loved ones.  The practice is cathartic and I dream of one day having something published, making the practice even more important.

I see 2020 being the start of a movement where I strive to be more present with my time, care and interest in my family, friends and others.  I greatly appreciate the simple, but intimate joy, of spending time with people I care about or am interested to know better over shared meals, experiences and time.  I don’t feel like I do it enough though and really want to have impromptu meals, game nights, afternoons hiking with friends.  I’m at an age where life feels more fleeting.  An age where both peers and parents are leaving us or are facing health challenges.  Time shared is so much more valuable than any purchased gift.  My perspective of this value has deepened as I’ve aged and I feel strongly about drawing my community more into my everyday life, holding them dear and near, celebrating nothing and everything.

On that note, slightly in advance, here’s to a bright 2020!  I wish you all a glorious new year filled with promise, joy and love!

 

 

BLUE CHRISTMAS (Elvis Presley)
December 24, 2019

Today is Christmas Eve.  We’ve been living at Children’s Hospital Los Angeles (CHLA) since December 4th.  Cole’s surgery has been rescheduled due to a cold he caught here.  If all goes well and he stays healthy for the next weeks, it will be January 6th.  We thought by January 6th we’d be well into healing but have hit bumps all along the way.

Christmas Eve is Cole’s favorite holiday.  For seventeen of his Christmas Eve’s, we’ve gone to my brother’s house to celebrate with our family and extended family, usually my sister-in-laws siblings, their kids and her dad an his wife.  Sometimes her half siblings and their children join as well so there’s 20-24 people gathering together for a night of fun.  We arrive with a non-gender grab bag gift, ready for a great night. The evening starts with cocktails and appetizers as everyone tumbles in.  Lots of catching up and lively chatter.

Eventually we all take our assigned seats and the feast begins.  It’s a traditional roast beef and Yorkshire pudding meal with two salad choices, two veggies, mashed potatoes, au jus, horseradish and lots of yummy wines.  It does not deviate.  Convivial conversation abounds as we all devour the delights.  Once we’re done eating, we migrate to the living room were we all don crazy Christmas hats that my brother has collected over the years. Some are Santa hats, some silly ones, some Hanukkah ones (we’re a multi-cultural family).  We then choose our day of Christmas and sing a rousing, often terrible Twelve Days of Christmas.

While we’re singing, someone sneaks out and throws on a furry, plush Santa suit and beard and appears just as the singing ends with little gifts for the younger ones.  Over the years it’s been most of the adults, and more recently the eldest of the cousins.  It’s silly but depending upon who is Santa that year, can be quite funny.

Following Santa’s visit, we settle back around the tables with cookies and sweet treats and take an annual holiday trivia quiz to determine the playing order for Dirty Santa.  Once we set the order, the game begins.  Starting from low to high, someone selects a grab bag gift. The next person can either steal (maximum of three steals per gift), or choose a wrapped grab bag gift, and so on.  The coveted gifts get stolen until they can be stolen no more.  Gift cards and tech gadgets are popular.

At this point it’s nearing 11:00 pm and everyone’s winding down, heading home, getting ready for Santa and the next day’s festivities.  In Cole’s mind, this is the perfect night.

Sadly, this year we’re stuck at CHLA.  It’s a fantastic hospital to be stuck in if you find yourself stuck in a hospital on Christmas.  But nevertheless, we won’t be with the rest of our crew and one of us will wake up at home alone (me) tomorrow because only one parent can stay the night and it’s my husband’s night.  We were gifted a little faux tree this morning complete with twinkle lights and few ornaments and have a festive collection of holiday stuffed animals that have been gifted to Cole by thoughtful visitors lending further to the holiday feel, though it somehow still doesn’t quite feel Christmasy.

Cole seems to fluctuate between being happy and sad when reminded it’s Christmas Eve. I think he might rather just have the next two days pass without much fanfare as we inch closer to the January 6th date.   Tomorrow I’ll bring a festive bag, left by Santa, with his gifts and hopefully it will be a cheery day.

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THE GHOST IN YOU (Psychedelic Furs)
December 17, 2019

I’m sitting in an armchair with Cole sleeping next to me in 27 lbs of traction, nursing a cold.  The last thing we need is a cold or illness of any sort but weeks in hospital in December are hardly the best circumstances to prevent illness!  Nurses and other kids all have the same little cough that he has.  Who knows where it came from – there are so many people coming in and out of the wing…So we’re doing all we can to keep it from getting worse. The surgery is scheduled for December 24th, which gives a week.

The traction process seems to be going well.  Cole’s spine is responding favorably to the slow stretching and from the last x-rays his ribcage is shifting back into place.  He sits so much straighter which gives us an idea of how he will sit following the surgery.  It’s really positive and he says he’s more comfortable even in the traction – and how can he not be?  His pelvis is straighter so he sits better and it’s also no longer touching his rib cage.  With his rib cage straighter, his lungs are no longer impacted so his breathing is better and simply sitting straighter really has an impact on his overall image – he looks more mature and present.

We’re now two full weeks into this incredibly weird existence.  I feel like a ghost in my life.  I spend about 75% of my time at the hospital, returning home every other night to cuddle our lonely, confused dog, do a load of laundry, sleep, shower and return to the hospital the next morning.  I can tell my husband has been there but we’ve not been in the house together for two weeks.  We spend time at the hospital together but with Cole and visitors and nurses, aides, doctors…endless comings and goings at all hours.

It’s hard to know what to do with myself when I’m home.  I’ve wrapped all of our gifts, though I’m not sure why.  We do have stuff we’ll pass along to my family for their celebrations and we shipped to family out of state but what of our celebration?  How do you celebrate when you know you’ll be spending Christmas Eve waiting with worry while your son undergoes a ten hour surgery with a couple of hours of pre and post op on either side of that ten hours?  How do you celebrate Christmas when your son will be in the PICU on Christmas and likely Boxing Day? We’ve considered doing something before with Cole but we can only have two visitors so we can’t even do something with the just my brother and his family and my mom, who is coming down from Oregon.  The reality is it doesn’t matter much to my husband and I, but it does matter to Cole, whose favorite holiday is Christmas.

None of this matters except getting him back to full health before surgery and then getting him through the surgery and the next month of recovery.  We’ll have to create a new holiday after all this is but a memory so that he can celebrate his recovery, bravery, and grace that he’s shown throughout these weeks.

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HANGING AROUND (The Stranglers)
December 7, 2019

Our lives took a very unexpected turn on Wednesday.  After months of prep for Cole’s spinal fusion surgery, we checked in on the surgery day, readied ourselves for a long day of waiting and surgery only to learn that when Cole was put into traction pre-surgery (but already under effects of anesthesia), his nerve function diminished so the surgery was put on hold.

Instead he was outfitted with a halo, a barbaric looking traction crown that is basically screwed into his skull, that has a handle of sorts at the peak from which weights on a pulley are looped through to slowly stretch out his spine over the next weeks in preparation for eventual spinal fusion surgery on the 24th.  Over the course of 20 days, the weight will go from five pounds to almost forty.  During this process Cole will remain at CHLA and will be monitored and x-rayed to ensure that the traction is working and that his spinal cord is handling the stretch well.

Fortunately, there is a wheelchair that’s been modified with the same traction set up so Cole can move around the hospital a bit during our stay, though after three days in a single room are already taking their toll.  We’re all adjusting to our new “home” and my husband and I are trying to work out reasonable schedules so that one of us is always with Cole (one parent is allowed to sleep there so we’ve been switching off nights) and one of us is working to maintain life – i.e. taking care of our dog, house, groceries, etc.).  We’re both able to work remotely, though given the longevity of our stay, we’ll each likely  go into our respective offices next week since there’s no real need for two of us to be in hospital all day, every day.  The trick is going to be finding some balance of normalcy in this weird existence.

Following the surgery on the 24th, we’ll have another week of post-surgery recovery so we’re likely there into the New Year.  Definitely not the holiday season we anticipated.  We’ll just be hanging around CHLA, making the best of a challenging situation.