The hardest year of my life…

It’s hard to say that – that this has been the hardest year of my life – because embedded in the difficulties there have been so many blessings. I mean, it’s hard to complain about having most of my spine fused when it was something I signed up to do; meaning I didn’t have an accident and wake up in a post-op bed at the hospital with something fixed that was never broken. Rather, I drove to the hospital with a severely curved spine and walked (::wheeled::) out with a straight spine, and some metal. Meaning, I got something “better” than what I had, even if there was a price to pay.
And boy was there a price to pay.
There was so much I felt in those early days; things I wanted to hold on to and never forget that, as time has passed, I’ve let go of and – begrudgingly – forgotten. Emotions surrounding what it would be like to be handicapped, forever; to watch your family move around you and to be present but not a part of what they’re doing. We take these vows of “in sickness and in health” but we never really know what sickness could entail. To be honest, I don’t know if we could have made it through if what was temporary was actually permanent. I’d like to think so, but you never know. It was hard to watch Willy struggle to do it all: work from home, care for the kids, care for me, and deal with my pain and health in conjunction with his own battles with health anxiety.
And then I gave him the scare of his life when I came down with a stomach virus and completely passed out and collapsed in the middle of the night. If his health anxiety wasn’t bad enough before, I’m sure I put it over the edge. When I came to he was on the phone with 911 and not long after that I was in the hospital, again.
A few weeks before that hospital visit, I had the worst neck pain I’ve ever had in my life. You can take the word “neck” out of that sentence entirely as it’s fair to simply say I had the worst pain I’ve ever had in my life. It just happened to be in my neck. Even to this day, I get a soreness that’s reminiscent and I get anxious just thinking about how bad it could be. I’ve birthed two very large babies under less-than-ideal circumstances with no medication. I’ve also, as you know, had thirteen levels of my spine fused and woke up with blood pressure in the 70’s, which meant I was not allowed to have pain medication for fear it would drop my blood pressure even more. I had a few blood transfusions following that. And even with all of that – the crazy births and the crazy surgery – I can say, with one hundred percent certainty, that nothing has hurt as bad (and for as long) as that pain in my neck.
Then we moved. And I can see now, in hindsight, why my parents – and probably others too – thought we were crazy. Not that it wasn’t the best decision, because it was, but moving is hard. Moving with two small kids is even harder. And moving at a time when you’re not able to lift anything or bend is just damn silly. But, we did it. And, like my spine, we came out on top because of it. We love our new location, we love our new home, and all-in-all, it was worth the trade. 
But that’s not to say it went smoothly. Our hearts were shattered the morning we lost Sarah. I still cry about losing her. I’m choked up now just reminiscing about her life and it’s tragic ending. It pains me more to think that people lose children. It all just makes me sad. Sure, we have Jimmie and we love Jimmie, but Sarah holds real-estate on our hearts that is hers and hers alone. Losing her on the last day in our old house made moving all the much harder and more painful. I couldn’t help glancing back in the rear view mirror and thinking that at the very spot her life ended, our new one was just beginning. And doing it without her with us has been hard. Man, the lump in my throat is painful right now. It doesn’t help that today is her birthday…
Recovery from the surgery has had it’s varying degrees of highs and lows; days go by where I feel more-or-less normal only to come crashing down with soreness and pain reminiscent of what once was. What I can say is that through the course of the year, the highs get higher as do the lows, if that makes sense. I’m out of the woods, albeit a few days here and there that require more rest and ice and advil than I’d like.
And so, it’s been a year. According to the PDF my surgeon gave me in the beginning, I’m approved to do yoga now. It also says I can do gymnastics after one year which, as a previous competitive gymnast, I find funny given the fact that my back does not bend (nor will it ever bend) so doing something like a handstand (which I used to do around the house all the time) would actually require some sort of push off my legs to land on my hands since I cannot fathom getting my hands on the floor in front of me at the same time my foot is on the floor. I’ve succumbed to the fact I will never tumble again, which is a little heart breaking because it was something I’d still do here and there at local gyms whenever I had the chance. I’m also allowed to go bowling now. Yes, I’ve had to take the whole year off bowling. Who knew. Other things I’ve been cleared to do: basketball, baseball, roller coasters, roller skating, rowing, and ::cough cough:: pregnancy (you hear that, Willy?). And two things I’ll never be cleared to do: sky diving and motorcycle riding. I guess it’s a good thing I’ve been sky diving twice in the past and have no interest in riding a motorcycle after my gymnastic coach passed away riding one. So that’s that.
My surgery has been more of a physical change, it’s been an identity change. I’ve always been the girl that could swing a bat and throw a ball; hell, I’d kick ass in pull-up contests and could beat many of my guy friends in push-up contests. My body today is not the body I knew before. I’ve had to adapt. I have yet to accept as I’m still working toward what once was. Most weeks you’ll find me at Physical Therapy three days a week, where I keep to an ever-evolving strength program intermixed with some massage so long as the people working there aren’t feeling lazy — that’s the price you pay, I suppose, when you’re a “regular”. I think they have a hard time fathoming why what they’ve been doing hasn’t made me completely better yet. I think I have a better vision of the length of the road than they do. I also think they are cool with me simple being able to do everyday things while – for me – recovery is much more than that (I want to be as close to the person I was before my surgery as possible). And that’s been frustrating, to say the least.
And there are other things – physically – that still bother me. I have absolutely no sensation in my mid to upper back. I have two scars – one from a heating pad that burned me when the cover came off (I couldn’t feel a thing – it took Willy to point out the large blister on my back) and another one from an ice burn (also couldn’t feel a thing). I can feel pressure in the area, but no sensation. The muscles there feel extraordinarily odd, so odd that I don’t even know how to describe it except to say that it doesn’t feel like they fire correctly. My low back gets tired from overuse and I can feel myself walking around hunched over, trying to fight folding over into the fetal position out of fatigue. I get numbness, from time to time, on my left side that creeps around to the front of my rib cage and really just causes me to think about my back more than I’d like. It’s kinda like when your heart skips a beat and then you become super cognisant of every beat your heart is taking. When my back is sore or I have a knot in my neck or my body is fatigued, it consumes my thoughts. And then there are days that I don’t really even think about my back. I like those days.
You know that feeling of returning to work after being off for maternity leave? (And I hope you do. And if you’re in the UK – I’m jealous of your postpartum time off). Anyway, take that reluctance and nervousness and overwhelming feeling of anxiety mixed with fear of change and multiply it. I was not cleared by my surgeon until September to return to work, nearly 11 months after my surgery. His main concern was my ability to perform CPR, which fortunately has yet to happen but is obviously a must have skill in the field of nursing. I was worried about other things: moving equipment, caring for adults when caring for little kids is hard, transferring patients, moving patients, being on my feet for 12 hours, and all that jazz. It’s been an overwhelming process that’s only complicated by my drive to do a thousand other things like getting my photography business to where I want it and a hundred other things I don’t even want to list for fear I’ll start dwelling on the whole process all over again. What it comes down to is this: it will be hard to return to work after so much time off. It will also be hard to get used to a new unit, as I will not be on the same unit I was on before. And I don’t even want to talk about the commute because getting up at 4am and getting home after 9pm is not going to be easy. But sometimes you just gotta suck it up and feel grateful for having a job to return to.
Hoping the hiccups in the months to follow are few and the celebrations many. Cheers, to getting through the hardest year of my life. And special thanks to all my loving friends and family that made so many sacrifices on our behalf and for the handful of you that have been so kind to share your similar stories of recovery with me; the love and support have helped us more than any of you know.
You can read other posts about my surgery here and here.

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Recovery

I remember a time in college where I was bending over to get something out of my book bag. A guy approached me and asked if I was a gymnast or a dancer. I was shocked, for two reasons really; first and foremost, um, get a new pick up line and, second, how the hell did he know I was a gymnast? He went on to say it was the way I bent over with ease and grace and I continued to be a bit weirded out. I wish I could end this short story with “then that man became my husband” but really, I don’t even remember what he looked like.
The point being, there was a time I moved uninhibitedly.
I was a gymnast, a competitive one at that, for years. I was that girl that would do handstands on walls that enclosed the Grand Canyon. I may have done the splits at a bar after being dared and, of course, after throwing a few back. I could also beat my husband, with ease, in a push up contest.
I’ve always taken pride in my body. Not so much in terms of appearance, but in terms of ability.
None of that changed when I gave birth twice to very large babies. I recovered and I went on doing handstands around the house and so on and so forth.
And then came back surgery. I’m far enough along in recovery now that I can do things. To the naked eye, my life may seem more or less normal. My thoughts, however, are plagued constantly by my aches and pains and limitations. I’ve adapted to not bending by bending instead at my knees. And, now, every time I squat down to pick something up, my knees ache and my thighs burn. My body is failing me, yet it’s not that at all. My body is healing and it feels like it’s taking forever. It feels like I live everyday in the body of an elderly woman. I need breaks, I need to rest in bed, I need to ice, hell, I’m two shakes of a lambs tail from switching from Advil to Alieve which would surely put me in the senior citizen category.
Learning to listen to your body; knowing when to push, when to give up, when to ask for help… It’s all a challenge and it’s all a careful balancing act.
Recovery is still very much a part of my life.
*As a side note, thank you to each of you who have also endured a spinal fusion and have reached out to offer advice or encouragement. It’s your words that keep that light at the end of the tunnel lit.

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My Baby

It was Valentine’s Day, a day we typically don’t celebrate. Not as a couple, anyway. We have lots of love for one another and our love is rooted deeper in a genuine friendship and we’ve both always considered it a bit silly to dedicate one day – and the same day as everyone else, no less – to express our gratitude for one another. So, when Willy came home with flowers and red vines I looked at him perplexed and awkwardly apologized for not having anything tangible to give him in return.
Then I requested that we go for a drive. Get out. Enjoy what was a beautiful day. And so, we did.
We headed to the canyon, a short 5 minute drive from our home. Hooper fell asleep in the back seat and as we got out to watch the sun set behind the rocky hills, we decided to leave him be. I snapped a couple shots of Willy with Van before asking Willy to place Van in my arms.
It’s been over four months since I’ve held either of my boys. And, more times than not, I’ve found that my need to hold them coupled with my inability to do so has been an unwelcome lesson in patience; when they are not cooperating or when they’re throwing tantrums or when they decide that climbing off their beds is more fun than climbing into their beds or when they get hurt and look to me to comfort them and I can do nothing. When Willy placed Van in my arms, I expected squirming and a full-fledged protest of confinement. What I got was my youngest son, my baby, in my arms. All to myself. His head on my chest, even if for just a moment.
We got back in the car after the sun went down. Hooper was still asleep in the back sleep, dreaming dreams of french fries or firemen- I’m sure. And as we drove away, I told Willy that that moment and the photo that captured it was the best gift I could have received.
The flowers died and the licorice got eaten, but this right here, these images – these memories – will always live on.
Today, I’m feeling grateful for my family.

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On The Mend

I have a running list of things I want to do when I’m feeling better… you know, when my limitations don’t feel so limiting and when my endurance allows me to get through a day without having to rest. The list includes things like day adventures, restaurants I want to try, and places I want to take the boys. Also on that list is the Rose Bowl flea market. We used to go to the Rose Bowl every other month or so and it was not but a few weeks ago that returning and fighting the crowds and having the endurance to make it through the maze of aisles sounded unbearable. But something has happened within the last week or so and I, quick-knock-on-wood, feel closer to normal than I have thus far in my recovery.
I had my three month post-op check-up with surgeon and have since weaned myself off my brace almost entirely. When I do start lifting the kids, I’ll need to wear it, but I’m not allowed to do that just yet so my back brace sits discarded on a chair in the office. It used to sit right by the side of my bed, right next to my slippers. Before, when I didn’t wear it, I’d have this sick and uneasy feeling in my stomach. But since weaning off of it, that feeling has disappeared. I’ve been off all my pain meds for a few weeks now and am finally allowed to take Advil, which I think would have been beneficial long ago (because the fusion works through an inflammatory process, I wasn’t able to take any anti-inflammatory medication). It was nice when my surgeon asked me if I needed a prescription for anything and I answered, “no”. I considered writing an entire post on my experience with pain medication but decided I’ll leave it at this: feeling normal is way underrated.
In any event, we made it to the Rose Bowl and I left questioning if that means I’m actually on the mend. I mean I didn’t anticipate crossing anything off that list I had made for some time. We didn’t stay as long as we normally would and we did take advantage of handicapped parking and we got only what we came for but, ya know, baby steps. On the way home, I was still feeling good so we stopped at what has become our favorite pizza joint in LA. It was our third day eating pizza for lunch in a row (we brought pizza home after our first visit). I had the pesto pizza with the ricotta cheese and it was as good as the first time. If you’re in the LA area, do yourself a favor and check out Vito’s Pizza.
Feels so good to be feelin’ good again, let me tell ya.

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Adjusting

Life rarely goes according to plan. It’s funny because growing up you hear all kinds of advice about making goals and putting together visions of where you find yourself in five years. I’m not opposed, per say. It’s nice to try to keep the train on the tracks and envision what moving forward looks like.
But life doesn’t always move forward, nor is the shrubbery that is the path always beat down and wilted well enough for you to even see where you’re going.
And so, I’ve come to learn that those who are the strongest are those that learn to adapt the fastest.
We all reminisce of our childhood, where presumably we were all cared for and fed and given valued guidance and love along the way. And then, when you become an adult, you celebrate the fact you can care for yourself. I’ve always valued my independence and am in no way blind to the ways my parents raised me to appreciate such.
This road to recovery has a lot of the aforementioned shrubbery. It’s hard to know if you’re even on the path, and thus, I’ve had to learn to adapt. Everyday I dig deep to hold on to a perspective that I believe in; you know, the whole glass half full perspective? And, for me, it’s a challenge.
For my children, on the other hand, adapting seems to be their second nature. No matter who walks in the door to care for them, they welcome them with open arms. I know my children are too young to know my struggles, but I’ve thanked them a million times over for their ability to adapt and adjust and allow others to do for them what I felt only I knew how to.
It’s an eye opening experience to relinquish control and allow others to do your job in the absence of any training. What I’ve learned is that it all gets done and no one dies.
There were days I was stuck in bed overhearing others trying to find Hooper’s blanket when I knew where it was. Or days I heard others trying to figure out what Van was pulling at their leg for and, without even being in the room, I knew what it was he wanted. And, you know what? It didn’t matter. They figured it out. My children are not books written in a language only a mother can read. And that truth has been very humbling.
Rolling with the punches. Adjusting. Being humbled time and time again. Hashtag: things words cannot express my gratitude for.

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Living Deliberately

I get asked a lot about how my recovery is going and I never know quite what to say. Like most things in life, there are good days and there are bad days but dumbing it down to that cliche doesn’t speak to the actual experience of recovery.
And then I came across “The Spoon Theory”.
The Spoon Theory was written by someone who has Lupus. The girl gives her friend a bouquet of spoons and has her talk her through her typical day. Each daily task comes at the cost of one of the spoons; taking a shower, for example, makes one spoon drop from the bouquet. And one by one, as the friend accounts for each event in her typical day, a spoon disappears.
You see, when you’re healthy the possibilities seem limitless. Never before have I looked at taking a shower as a task as opposed to a privilege.
Recovery has changed that for me.
Living daily life with a disability forces you to live very deliberately. Almost every decision is a calculated one and my reason for choosing one thing over another depends greatly on my pain and / or limitations. When I shower, for example, depends on when I’ve given myself my daily neck treatment (I have an ultrasound machine at home I use to massage heat into the sore tissues in my neck). The gel gets all over my hair, so when getting ready, it’s something I have to take into account. I also have to take into account when I took my pain medication last (the heat from the shower will make me pass out if it’s too close to the time I took my pain medication). And I thought getting out the door with two kids was hard…
For a long time, I had difficulty raising my arms up over my head. Washing my own hair just about used up all the spoons I had. Blow drying my hair was / is nearly out of the question. Today I’ve gained mobility back in my arms but due to my bending restrictions I am still unable to properly blow dry my hair.
And so, caring for myself – and, in turn, feeling good about myself – has been a challenge. It feels like it’s been years since I’ve had the freedom to wear whatever I want. In 09′ I was pregnant, in 10′ I was breastfeeding, then in 11′ pregnant again, then in 12′ breastfeeding again, and then surgery in 13′. I’ve resorted to leggings, slip ons, and an oversized cardigan I can fit over my back brace.
Recovery has made me let go.
Would you believe I bought Crest White Stripes for the sole purpose of feeling like I’m doing something to help my appearance?  
I digress. Back to living deliberately.
I went to run a couple errands by myself the other day. Sounds like normal life, right? It was during one of my I’m-feeling-better waves so I always take advantage and usually do more than I should; I dip into tomorrow’s cluster of spoons, if you will.
When I get into my car, I watch how far I open my door. If I swing it all the way open, once I’m inside sitting in my seat, I’ll be unable to lean over and close it. I keep the door just barely cracked and squeeze in so I can close it on the third rock: rock it back and forth once, twice, and with a third rock, I get my door closed.
I drive an SUV because I’m a mom in Southern California. The gear shift is up by the wheel and I dread putting it in reverse. As soon as I do so, my scapula on my right side feels funny and I immediately start wondering if driving is something I should be doing. I remind myself of the PDF my surgeon gave me and I try to picture the word “driving” with the words “one month post op” next to it. I’m three months post-op and I remind myself it’s okay.
I drive and listen to music. Nirvana comes on and I turn it up loud. It feels like forever since I’ve been alone. Between having family by my side or, more recently, the nanny we had to hire to come in to help, the days when I could simply get away and be with my own thoughts feel like long ago.
I want to go shopping for shoes. It’s been ages since I’ve been able to try any clothes on (just getting dressed once a day costs me a spoon) and a pair of moccasins I had prior to surgery somehow mysteriously disappeared. I pull into the shopping center to discover the store has moved.
I put the car back in reverse and I get that weird feeling in my right scapula again. I go through the same imagery as I did before, “Driving – – – one month”. I feel the weight of the chip on my shoulder as I drive out of the parking lot having stopped but not having crossed a single errand off my list.
I head to CVS to return some medicine we had bought for Hooper only to get home and find that the bottle had already been opened. I crack the door open and do my typical slide down off the seat and I close the door using my whole body. Because I’m not a fan of potentially poisoning my son or of spending twelve bucks on something we never used, I wait in line to return it. They give me cash back and I immediately remember I had wanted to pick up some hair gel and bobby pins too. I make my way to the hair aisle and as I near the gels I can feel the muscles in my neck starting to tighten. I glance back at the line of three people behind the only open register and I leave without hair gel or bobby pins for fear my time is limited. It was going to cost me an extra spoon.
I get back in my beast of a car and rock the door three times before closing it. I put the car in reverse and confirm that, indeed, my neck is sore.
I make it to the shoe store I had originally intended to go to. I slide down off my seat and close the door, again, with my whole body.
I walk into the store with my purse hanging from my shoulder. It’s the first time in three months I’ve dared to let it actually hang from my shoulder as opposed to caring it under my arm like a clutch. With the soreness creeping in, I immediately start cursing myself for the extra little things in there that I don’t need: the raisins that are starting to feel like rocks, the two pairs of sunglasses that are starting to feel like their actually sitting on someone’s face… someone’s face whose head is in my bag.
I scan a couple aisles of shoes. I try on some slip ons. I try to pretend that I’m normal as I turn left and then right in front of the mirror, carefully checking myself out like I used to. I see another pair I like and I curse my size for being the box on the very bottom, other sizes that are as useful as peanut butter to a kid with a peanut allergy stacked high on top of it. I carefully maneuver it out and try to ignore my urge to reach up and stop the box on top from falling. I’ve learned it’s not worth the pain later and better to let the damn box fall. This has bled into watching my kids jump on the sofa. I sit as far away as I can with my fingers crossed because I know they’ll shoulder the tumble better than if I were to sit there and try to break their fall.
I decide it’s time to go despite the fact I have not made it down all the aisles I’ve wanted nor have I tried on all I was interested in. I decide the shoes and boots that require any lacing up or buckling can be saved for another day, another spoon. I walk toward the exit where I see an older woman and her even older mother coming toward the entrance. We’re going to meet at the door at approximately the same time and I’m hoping they’ll get the door for me. Those pesky big, heavy doors are my nemesis. I can see by the look on their faces, however, that I am expected to be the doorman; I am young and deceivingly hearty. And so I get the door for them, awkwardly pushing it open with my whole body as my feet kinda shuffle under me. I try my best to hold it for the duration it takes for her to get her walker through the door. I watch as the door just misses clipping her ankle. I don’t feel bad, rather, I feel pissed. I just used another spoon and I didn’t even get anything out of it for myself. Pain can you make selfish.
Rock one, rock two, rock three, and I shut the door and start the car. I have one stop left.
I walk into the bank and am pleased to see there is no line. It feels like karma is back in my corner. I make my way to the teller, tell him what I want to do, and he asks for my ID. I flip open my wallet and when it’s not where it usually is I remember that Willy had taken it when the paramedics came to take me to the hospital the week prior.
He tells me he’s going on his break and I sit down in the chair and wait for Willy to bring me my ID. I’m fighting feelings of anger toward Willy for having not put my license back in my wallet and as I feel those negative emotions come over me as I sit and wait and wait, it dawns on me that that’s not me, it’s my pain, and it’s trying to take me down, trying to take me over. I would never blame my husband – my best friend – for having my license after saving me from falling after I completely lost consciousness and getting me to the hospital. My pain, on the other hand, has no friends. No loved ones. No family. My pain could give a shit about what’s fair or right or humane. My pain is an asshole; it preys on my patience, it preys on my otherwise fun-loving spirit.
Willy calls me to tell me he’s in the parking lot and I’m immediately pissed off that he expects me to get off my ass and meet him there to get my license. He says something sweet and cute but I truthfully don’t even hear him. My pain has made it so his words fall on deaf ears, his smile on blind eyes. I start to say something snappy but I catch myself and hobble back toward the bank, back through the heavy double doors. There is a short line now and I wait.
Recovery has changed me. I hope I will never be the same. These days, I live deliberately and I hope that when life does return to normal that I can remember these burdens, these pains. Normal, healthy people don’t know how good they have it.
Everyday we all make choices. For the healthy, these choices are made more unconsciously but for the disabled, all decisions are conscious decisions. When you have pain or limitations, you’re constantly having to assess the gas in your tank. If you run on fumes you have to deal with the fear your car may break down the next day, or worse yet, the reality your car won’t start the next time you get in it.
I find myself feeling constantly torn between having feelings of gratitude for having a nanny to help with the boys, the laundry, and the dishes and feelings of frustration that I cannot care for my own home independently; that I have to rely on someone else, always. It doesn’t feel so wonderful when it’s not a choice. Offer me a nanny when I’m fully capable but feeling lazy and you’ll probably see me beaming from ear to ear. But take away my ability to do things on my own and suddenly all I want is the freedom associated with independence.
Like many other with disabilities, pain, and / or limitations, I hate having to stay behind. I’ve missed birthday parties, days at the beach, gatherings at wine bars, day trips. Like The Spoon Theory states, having an illness or disability is – in itself – a lifestyle. It’s hard when you are your own dead weight.
I know I am not alone. The author of the spoon theory has Lupus. I’m recovering from major spinal surgery. But even motherhood is a disability in some sense, isn’t it? I mean when you have small children, you too must slow down, strategize, skip aisles of shoes and leave without trying on all the shoes you wanted to. For me, this was one of the biggest adjustments of becoming a mother; the realization that your life is no longer yours. So I guess we’re all in it together to some extent. We all have our handicaps.
When the pain subsides, I return to me and I see things for what they are. I’ve always prided myself for my ability to keep things in perspective; all the more reason I hate my pain for infiltrating my good attitude, for cracking my code so damn easily.
Health is such a gift. I hope I never lose sight of that.
I snapped these pics the other day standing in the same position; looking left, ahead, right, and down. I think it’s fitting to pair with this post because really, any situation can be seen many different ways. Recovery is not only a curse, there have been many blessings too.

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Hooper & Recovery

I knew I’d be relying on a lot of people post operatively. And none have disappointed. My husband, my parents, my in-laws, my grandma, my sister, and a handful of friends have been making this merry-go-round go round. I’ve been filled with more gratitude than pain, more love than weakness.
I didn’t expect any help, in any way, from either of my boys.
There was an evening, before my surgery, that I explained all that was going on to Hooper. Nervous and anxious, I cried as I told him his Mama was going to have a big owie on her back. To my surprise, he got down off the sofa, kissed my back, and instructed me to see his pediatrician.
Following my return home from rehab, I had several breakdowns. I had no idea how emotional recovery would be. I sat there at the dinner table, nauseous with my stomach in knots, crying over a plate of food I could not eat but knew my bony frame needed to eat. And it was Hooper who was first to climb down from his chair and wrap his arms around his fragile Mama proclaiming, “I make Mama allllllll better”. He was a bit perplexed when his sweet gesture made me cry harder; eyes as big as I’ve ever seen filled with concern, worry, and love for his Mama.
When the physical therapist (aka my mom) comes to the house to do ultrasound on my neck, it’s Hooper who pulls up a chair next to me and insists on watching as his Nina (grandma) makes Mama “allllll better”. And when I wake up in the morning and dangle at the edge of the bed, it’s Hooper who will stop anything he’s doing to help me with my brace. And when he goes for a bike ride or a walk outside, he always returns with a bouquet of dandelions he picked for none other than his Mama.
It warms my heart.
It’s so interesting to watch how your children adapt to new circumstances; how their character grows and expands. His tender touch, his helping spirit, his genuine concern… These past few months I have been so proud to call him my son.
Wishing his kindness would transfer over to his relationship with his brother. That’s a whole other story…

Recovery & The Space Between

A few weeks ago, Willy put Van down for a nap and took Hooper with him to go to the grocery store. As he walked out the door, I recall how he begged and pleated with me not to pick Van up if he wakes up early from his nap. Internally, I rolled my eyes, and reminded him that I have to use a straw to drink out of a cup because physically tilting the cup up is too painful.
And that’s how life had been in those first few weeks.
I spent the better part of my days in bed, turning from left to right every couple of hours when the pressure on my bony hip grew to be too relentless. I secretly celebrated two days after I got released from the hospital when I was able to turn and reconfigure the pillows entirely on my own. Between the pain and the twisting/bending/lifting restrictions, it wasn’t easy. But these days, I’m trying to celebrate the small things.
If I didn’t celebrate the small things, I’d fall into a depression. I can guarantee this to be true because there have been entire days where I couldn’t stop crying, where I practically drowned in the tears of a self-pity party. Hooper caught me in one of these moments and was so genuinely concerned, so fearful, and I couldn’t suck it up; the depression weakened me to the point where I couldn’t even fake strength in the face of my own children. That’s not a testament to my weakness, but rather to the depression’s strength.
I have to remind myself often that I had a major surgery and I have to constantly cut my body some slack for taking the time it needs to repair itself. Recovery has been a trying experience.
Willy and I blew up at each other the other day. We both were more or less ignorant about what to emotionally expect in the face of recovery. What ensued was a long drive and a discussion on perspective. I have to remind myself on a regular basis that I elected to have the surgery I did. Sure, surgeon after surgeon told me it was necessary but ultimately it was me who said when. At the moment, we’re struggling with the space between; trying desperately to deal with pain and limitations and a ridiculously chaotic household in light of the fact that what is our reality today will not be our reality a few months from now. Countless friends and family members have stepped in to help and what I’m realizing is that more than food on the table or entertainment for our boys, we need perspective and patience; A reminder that what we’re going through is indeed temporary. The truth is that all of us – you and me – are in a state of transition.
Everything is temporary.  
I reminded myself of this notion when I gave birth to Van and felt like a hungover college student (due to the sleepless nights, of course) for the first three months of his life. And now, more than ever, words have never rung truer. The space between is a road we all must travel, but the further we travel, the more the gap closes. And the more the gap closes, the more you realize it was all temporary anyway.

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The Surgery Story

I was baffled when the man behind the counter said “two hundred”. And yet, as I was shuffled from one waiting room full of people to the next waiting room full of people, it dawned on me that they have this surgery business down to the same way as a farmer herding his cattle. It didn’t feel real until I made it to the final room and Willy was asked to wait for me somewhere else. At that point, I followed a young man who quickly led me to a gurney and encouraged me to transform from street walker to patient as he reminded me, like us medical personal always do, “gown opens to the back”. And just like that, I looked just like the person next to me, who wore the same hospital gown and sat anxiously awaiting her fate on a different gurney.
The doctor came over to talk to her and pulled the curtain to give a false sense of privacy. I overheard that she was about to undergo a crainiotomy for some sort of leison pressing on an optical nerve. I used her crainiotomy to lessen the fears I had about my own spinal surgery. I mean, she was having brain surgery. All I could imagine were those eggs sizzling on a frying pan from those commercials in the 90’s that reminded us what our brains were like on drugs. Not that there was any correlation. But then I heard her doctor say, “Not to worry, crainiotomys are actually quite simple procedures and the pain post operatively is minimal… nothing compared to what the spinal patients have to go through”.
Just the words I needed to hear.
And then it was my turn.
Suddenly my little guerny was surrounded with people. A pre-op nurse struggled to chime in and collect my medical history, of which there was none. The anesthesiologist had a student with him. I let her try to place my IV. She missed twice before the anesthesiologist stepped in and insisted on doing it himself. I saw my surgeon at the end of the gurney talking to Willy. He asked if I was ready, I gave him a nod, not really knowing if I was ready or not; “As ready as I imagine I’ll ever be” would have been a more honest response.
Someone asked if I’d like something put through my IV line to “calm down”. I wasn’t noticeably anxious, but I gladly accepted. They pushed some versed through my IV line and as they started moving the gurney down the hall, my mind became a bit cloudy and I surrendered. I glanced around the operating room and then the lights went out; not literally, but figuratively.
My surgery was supposed to take 4 to 6 hours. Willy waited, fighting his own anxieties, with my dad in a waiting room. It took 8 hours.
When I came to, I was in pain. A lot of pain. There were a lot of people around me again and I quickly realized I was back to where I started only with a lot of pain and surrounded by people who were no longer strangers to my body. My blood pressure was low and I was given some extra fluid through my IV line, which had been switched to a central line in the jugular vein in my neck. I also had an arterial line in my left wrist, two drains coming out from my back, a foley catheter to drain my bladder, and pumps on my legs to prevent blood clots.
I spent two days in the ICU. I was told I lost a total of 2L of blood (the average woman has about 4L of blood) and I was given 4 units of blood as a result. My blood pressure remained in the 70-80’s (120 is normal) and I was given several bags of added fluid.
I looked like a balloon. My eyes were so swollen I couldn’t open them. I couldn’t even tell you what that ICU room looked like. In fact, my ICU nurse came to visit me days later and I recognized him only by his voice. My stomach was incredibly distended and painful and I had horrible pitting edema on both of my lower extremities.
It felt like forever before they were able to give me something for my pain (pain medication causes your blood pressure to lower, so they couldn’t give me anything until my blood pressure was under control). When they did, I got a button and was told to press it whenever I needed something for pain. Then I was nauseous.
Two days later I was transferred to the less-acute spine unit.
Before my surgery, I had anticipated bringing my lap top to the hospital to write and surf the web and pass the time. I remember thinking immediately how silly that was. I was in no condition to even sit up in bed, let alone put coherent thoughts together. It’s been nearly two months and only now am I able to sit down for any length of time to put write my thoughts down and it has taken several sessions to finish this post.
I stayed on the spine unit for another 5 days before being transferred to another hospital for an inpatient rehab program. I stayed there for an additional 5 days before finally coming home.
It’s been a long, trying, road. Recovery is not easy. A few people have called me brave, which makes me laugh. I’ve cried and cursed a lot. I’ve felt weak and frail and defeated. I’ve had episodes of depression and, even worse, episodes of withdrawal when I tried to stop taking my pain medication.
I’m not even close to the end of the road. Technically speaking, it takes the spine an entire year to fuse. But I do rest easier knowing the worst is behind me. There are plateaus that are sure to come that bring with them frustration and doubt, but the worst is behind me. The worst is behind me, the worst is behind me, the worst is behind me. Like a ruthless teenager writing standards on the chalkboard in high school, I need to say it repeatedly to bang it into my darn head. Really though, the worst IS behind me. Right?
The details: On October 10th I had 13 levels of my spine fused due to curvature from scoliosis (thoracic 62 degrees, lumbar 48 degrees). Because my curve was progressive in nature, surgery was required. My curvature did not cause me pain or limitations. I was told that they had to fracture each vertebrae on both sides for a total of 26 fractures so that the 27 screws and 2 rods could be placed. I gained an inch and a half in height and lost a chunk of weight due to the pain medication I was on. I have to wear my back brace for a few more weeks. Recovery takes about 6 months. Feel free to ask any questions you may have in the comment section below.

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