JUST LIKE STARTING OVER
September 19, 2017

I’m one month out, post surgery. I got the clearance to begin easing back into physical activity. I can walk with vigor, exercise moderately, and tend to some of Cole’s needs (still not quite ready for heavy lifting, but can move towards it over the next few weeks). I’ve been back in the office since the start of the third week. I tired quickly at first but I feel like myself again.

Yesterday all of the surgical tape was removed, and I got my first clear view of my new self. While the procedure was prompted by health concerns and constant pain, I must say the superficial benefits of it are pretty amazing. I actually have breasts that fit my frame and compliment my body. I feel lighter, stand taller, and am completely inspired to get the rest of me in better shape to better suit my new boobs. All of my clothes fit differently too.

As I wrote previously, the aching pain I have suffered from for twenty odd years is gone. Though I haven’t been able to lift Cole yet, I can tell that not having so much body in front of me, will be an asset in lifting him safely and more comfortably, especially as I move deeper into my fifties and beyond. The need to lift him and support his body whilst taking care of personal needs and dressing is not going to end.

It will be several months before I’m completely healed, and at least one or two more before my new breasts settle into their final size, but even just four weeks in, I have to say it was worth all of the hardship I’ve inflicted on my poor husband and child, who have had to make adjustments to their routines to accommodate my needs. At the end of the day, it’s just a few months in the lifetime we will continue to share. From here on out, each day will give me a chance to get stronger, healthier and to become more the self I dream of.

Doing something this major, largely for myself, has taught me that it’s okay to take chances on myself. I view it as an opportunity to reset some of the habits I’ve fallen into over the years of my adult life. I am eager to continue transforming myself both physically, through better eating and regular exercise, mentally, by engaging in things that interest me and feed my soul, and emotionally, by trying to be a better wife, mom, friend, daughter, sister – a better me. My guys and my friends have shown tremendous kindness, support and love during this process and I want to keep that alive in all of my relationships.

Who knew that new boobs could lead to such a whole being revolution?

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CHANGES
September 18, 2017

It’s not often that parents of special needs kids do anything to radically rock the boat, but I recently did something radical that impacted everyone in my family. I got a breast reduction. I have contemplated doing so for the better part of fifteen years but held back for any number of reasons – cost, time off work, the physical restrictions, my weight, and the fact that electing to have surgery made me nervous.

I researched and researched and finally decided to just go in for a consultation so I could learn my options, my potential outcomes and whether it could be covered by insurance. My surgeon took one look at my bare, braless breasts and exclaimed, “They’re huge!” Followed by “Please let me help you”. I was simultaneously amused and taken a back. She’s a breast surgeon; surely she’s seen large boobs. Apparently mine were in a class of their own. Who knew?

I learned that there was little doubt that my insurance would approve the reduction and that the surgery itself is considered a fairly simple surgery. There’s no muscle or organ cutting and it generally is a 3-4 hour procedure. I learned about the post-op care, very limited movement for the first couple of weeks, and no lifting or sweat worthy exertion for several more. This again gave me pause because I have a 15 years old child who I lift and transfer and dress and change. How would that work with just one of us being able to do that for nearly two months?

My husband was supportive and cleared his travel schedule (he travels a lot for work). He assured me we could get through this and that it if this surgery was necessary and wanted, we’d figure it out. We do have a history of getting through all kinds of challenges, obstacles and uncertainties. Part of it comes with the territory of special needs parenting (you have to be very malleable) and part of it comes from us being a pretty good team.

So I moved forward and got it on the books. It was initially scheduled for August 14th, the day before Cole started his sophomore year of high school, but it got moved to the next, his first day of school just weeks before. We enlisted childcare to be home when his school bus arrived in case we weren’t yet home (the surgery was supposed to be 3-4 hours, starting at 10am so chances were good we’d be home on time), but just to be safe…childcare in place.

I cleared it with work, with the plan to work from home after the first week and then take it from there. I’ve been at the same company for many years and had their full support. It goes without saying that telling your male bosses that you’re having breast reduction surgery is quite a funny experience! Lots of gulping on both sides and averted eyes!

I got cleared by internist and again by the surgeon, and off we went.

My surgery lasted hours longer than a typical reduction, over six hours. I felt groggy leaving the surgical center, but immediately noticed the effect of the reduction. My neck, shoulder and back pain lifted. I had drains and tubing sticking out of my sides, obstructing most of my arm movement and I felt sore. I was warned that they do a lot of lifting of your torso and twisting during the surgery to ensure that everything is even, and in place properly and symmetrically. The after effects of that did not go unnoticed.

It will be months before my new breasts are completely healed and able to lead a normal life but almost instantaneously the effects of the surgery are life changing.

More to come…

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BABY ELEPHANT STEPS
November 5, 2015

Cole’s doing an intensive two-month long, three days a week, bout of physical therapy. He’s getting up on his feet, standing and stepping using a Lite Gait treadmill system. So far he loves it. It’s hard work and already this week he’s doubled his walking distance. After four months of largely reclining on a bed or sitting in a comfy Chill Out Chair, it’s got to feel good to get his body moving again.

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This is a boy who for years would repeatedly respond to almost any question with “I want to move my body” on whatever communication device he happened to be using at the time. He has always preferred to be on his feet, whether supported by equipment or human.

Until the surgery, he even liked to move when he was sitting, the “kicky dance” as we fondly call it. When he hears music he likes, or sees something funny or entertaining, he would kick his legs and feet whilst drawing his hands to his hips – think River Dance but seated. He started doing this when he was baby and continued up until the surgery. We are just now starting to see the tiniest bit of foot action, giving us hope that the kicky dance will return. It’s adorable, and the smile that most often accompanies it is beyond infectious.

I feel relief in the joy he seems to be taking from doing the physical therapy. While his endurance still needs some building (he’s exhausted at the end of the day, which makes evenings a bit trying for all), he’s finally starting to show signs of psychological recovery from the surgery. His body and mind did not heal at the same rate but it seems like the mind is starting to catch up finally.

The holiday season is a time of year Cole loves, giving me lots of hope that between all of the strength and walking training, and his love for all things holiday will have him completely back to his happy, strong, amazing self in the New Year! I’m also holding on to hope that we can stave off the constant listening to holiday music until after Thanksgiving…only 21 days…could happen…

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PHENOMENAL CAT
November 2, 2015

Prior to Cole having his surgery I read a funny article about the healing power of a cat’s purr (Healing Power of Cat’s Purr). I shared it with my husband because we have a cat, Charlie, and I thought it was kind of interesting. He scoffed at the idea, as he’s apt to do when I share something off the beaten path, and particularly when it comes to health or medical related subjects.

Charlie is about twelve years old. We adopted him when Cole was two, along with his brother (Nick) and sister (Nora), both of whom are no longer with us. Charlie’s a fairly independent cat. He’s always liked Cole and as he’s aged he often tries to sleep on Cole’s back or bottom (Cole prefers to sleep on his stomach), but otherwise, we don’t typically see much of him during the day. Charlie spends his days sunning outside, visiting a few neighborhood dogs and cats, and doing whatever cats do. He relishes his independence.

However, Charlie’s routine took curious turn when Cole came home from the hospital following his surgery. Charlie became a caregiver. He took to vigilantly curling up between the casts during the day and night or draping himself over one of Cole’s legs with his head resting on Cole’s hip, purring. Purring a lot. Purring healing purrs.

He spent every day of Cole’s healing nestled on or near Cole. We took to calling him Nurse Charlie because he was so consistent. When Cole was moved to another room, Charlie would curl up in the spot left by Cole until he returned and then would reposition himself to be close to his charge. It was really fascinating. He took his nursing duties very seriously.

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Even now that Cole’s returned to his usual routine and is out of the house during weekdays, Charlie still hovers nearby and curls up with him for bedtime. It’s rare that if Cole’s resting on the bed, Charlie’s not nestled right next to him. It seems he’s not quite ready to stop caring for his precious patient.

Funnily, my husband and I both took to posting #NurseCharlie photos on our instagram accounts and when he was recently away on business he had lots of inquiry about Nurse Charlie. It would appear that our cat has captured some hearts. Perhaps he needs his own instagram account!

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PAIN & SUFFERING
September 8, 2015

This past weekend seemed longer than the long weekend actually was, if that makes sense. I continue to be frustrated in my inability to discern the nuances of Cole’s pain and anxiety. I find it odd that nearly three months out from the surgery he’s still in so much pain and discomfort. It doesn’t seem to be improving at all. My husband suggested we take him to see his surgeon a few weeks ago and at the time I thought it unnecessary, and he didn’t push it. Now I kind of regret it. We have a long set follow up appointment with her next week so at this point it makes the most sense to wait for that but the fact that he still seems so fragile physically, and mentally (which is a totally different beast) concerns me.

He came home Friday and cried for well over an hour. Not a whimpering cry, but a wailing, heart wrenching cry. Nothing I did helped or consoled him. He just cried himself out.

My husband was still away and friends had kindly brought a birthday party to me as it was my actual birthday. Cole was excited to hangout with his friends (their children) and to watch Pitch Perfect 2 with the gang. While the moms sat in the backyard enjoying champers and cheese, the gaggle of kids watched the movie, shuffled around the living room, talking and laughing, and Cole slept more soundly than when he’s tucked in bed. He slept through the movie, the singing of happy birthday, eating of cupcakes, and gentle hugs and kisses to his sleeping self as everyone piled out. He slept through me moving him, pajamaing him, and slept pretty soundly till morning.

Saturday we were supposed to hang out with my mom and Cole and she had plans to take me out for birthday sukiyaki (a word that Cole finds hilarious!).   However, when I suggested we start getting ready to go pick her up, he outright panicked, and continued to do so for the rest of the day. He couldn’t seem to stop himself from hyperventilating and worrying about every movement, touch or suggestion of change. He finally admitted to me that right now he needs his Saturdays so be plan free and that he only wants to hang out in my room, resting on the bed, watching TV or movies. No suggestions of going out, no trying to move him to different rooms. I don’t understand, and I don’t really like it but if he feels like it will help him regroup after the week or whatever, I’ll respect it. For now…

Sunday I managed to get him out of my room because my brother and sister-in-law surprised us with coffee & bagels, so I just moved Cole. He wasn’t pleased but he settled down fairly quickly and enjoyed hanging with them. His dad got home while they were there too which helped boost his day even more. The three of us actually got out of the house for a bit and he enjoyed some bath time.

Monday though was more of the same refusal to leave the bedroom. He just struggled to hold it together all day. It’s really starting to freak me out, and to worry me. I’m so unsure of what’s physically paining him and what’s mentally debilitating him. Both seem daunting on their own but pair the two, and throw in normal teenage hormones and stresses and then try to figure out what’s what and how to help. I honestly can’t. As a mother, it’s the worst feeling in the world to know that you simply have no answers, solutions, or comfort for your child.

We’ll see what the week brings. Lately he’s done so well during school hours, and at homework club, and then falls apart when he returns home. I tried finding solutions to that last week with some success, but I’m not confident that this week will be the same, though I’m not sure it could be any worse. Mustering a little optimism, maybe it will be better for him…

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TODAY
September 1, 2015

Today is the first day that Cole’s been without a parent since having surgery on June 18th.   Today is his first day of 8th grade. Today is the first time he’s been out of the house for more than a few hours since the surgery. Today is the first time someone will be caring for him who is not his parent. Today is the first day both my husband and I left the hose for our respective jobs to work in our respective offices. Today is a highly liberating day for the three of us….

The first paragraph was written on August 17, 2015: I couldn’t muster the energy to finish the entry but promised myself that I’d return to writing September 1st. So here it is September 1st, another Today.

I feel like I fell off the planet when Cole went in for surgery. Despite continuing to work, Monday, Wednesday, Friday at home with a caregiver managing Cole’s primary care and entertainment, and Tuesday and Thursday at the office, where I got to escape some of the claustrophobia that accompanied the summer of recovery.

During the summer, which felt incredibly long, I grew to loathe my bedroom. We had set it up for Cole since it’s roomier, has an overhead ceiling fan to help with summer heat (no fun if you’re wrapped in full leg casting) and he fit on the larger bed more comfortably. Cole spent a month of summer in the casts, and then moved into what we, very mistakenly, thought would more comfortable and manageable knee immobilizers and a back & hip brace. Not so. He has to wear those 24/7 for two weeks and now just at night.

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It wasn’t the summer I’d imagined when preparing for the surgery. I had hopes that we’d be able to provide him with lots of visits and time with friends but unfortunately that just didn’t happen. His life stopped moving for two months, while friends were busy with their summer fun. It’s understandable and reasonable, but still very hard to explain to your lonely child.

One of the highlights turned out to be the letter campaign Just prior to Cole’s surgery I initiated on Facebook. I challenged my FB friends to write to Cole. A letter, card, postcard, list of favorite books, movies, music, anything, and he would write them back. He received nearly 200 pieces of mail, including some thoughtful gifts, and we spend a lot of time writing everyone back. We had cards from friends, family, coworkers, notes from various countries like Hungary, Japan, the UK, and Belgium. It was overwhelming and fun! A great non-tech, no screen, activity!

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And then as long, and monotonous, as summer seemed, it passed and school’s back in session and life has returned to some sort of normalcy. It feels fragile though, like we’re on a tightrope teetering from side to side to maintain the semblance of being okay.

But I’m not sure that we really are.

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TEARS OF A CLOWN
June 25, 2015

Cole is a funny one. He can be struggling with pain and discomfort but if I bang my toe on something whilst making my way around the obstacle course that was once my bedroom, jovial laughter replaces his whining and tears. Hearing someone say “beautiful” on TV has the same effect, and seeing someone kiss often does as well. He somehow manages to distract himself out of the anguish and momentarily finds humor.

As I tried to put him to sleep tonight, he was fussing and feeling a bit achy so we gave him a dose of valium and some Tylenol (really working to get off the oxy…) and as he and I waited for the meds to take effect, we noticed that we could see the sunflowers I picked for him today from our garden even in the dark. I said something about them being so beautiful and he laughed a little. Then I broke into made up lyrics about the flowers smiling at him to the tune of our song, Coldplay’s Yellow.

My little ditty led to body shaking hysterical laughter. Yes, sometimes I can be really funny…It’s the first great laugh he’s had since last Thursday so it was amazing to hear and I feel like somehow it relaxed his body enough to allow him to begin to contemplate sleep without the anxiety he was having before the laughter.

I hope he sleeps peacefully tonight, dreaming of sunflowers smiling and laughter. He’s had a few rough nights since we got home from the hospital so a good nights sleep would be beneficial to him and to his Dad and I (when he’s not sleeping, no one is sleeping…and hormonal woman that I am, resuming sleep after be awakened for any period of time just doesn’t happen…I can’t figure out how to will myself back to sleep)…

Sleep little darling, do not cry…I will sing a lullaby…(about smiling yellow sunflowers)…

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HURT
June 24, 2015

We’re home after four nights spent at Children’s Hospital LA (CHLA) following Cole’s nine hours long orthopedic surgery. The surgery itself went well, although we had hoped that his left hip would be able to be repaired, something that would enable him to continue to bear weight and walk as much as he wants, there was too much damage to the femur so they had to do something called a McHale procedure, whereby his femur was trimmed and reversed so that he won’t have pain from the arthritis. It was successful, but the sadness of it is that Cole won’t be able to continue to walk as much as he likes to or to bear weight for long periods of time.

While the surgery went well, Cole’s breathing took several days to bounce back from the effect of being under anesthesia for nine hours, which led to water on his lungs that compromised his breathing. It was frightening to watch him desat every time his support oxygen was lowered. He’s never had breathing issues so to have this new worry felt like too much. I spent each night just listening to him breathe, holding my own breath when his faltered.

Thankfully it resolved itself and we brought him home on Monday afternoon. We’ve spent the last two days trying to work out a routine for him. He has to be moved and repositioned every few hours to prevent his skin breaking down. He has full leg casts with a bar fused between them at the ankles, which makes lower body clothing problematic. We’re also still trying to manage the pain and the pain meds. While we’d never stop the narcotics while he needs them to be comfortable, we also don’t want him to become dependent upon them. Tricky business.

It takes two people to move or transition him and to tend to his personal needs. I’m not certain that this will change once he’s more comfortable. He’s heavy with the additional weight of the casts and the balance is strange with them too. At the moment it feels like it’s too much for one person to handle alone which feels almost claustrophobic. It’s still new and we’re still working out the kinks. The biggest concern is that Cole is comfortable, pain free, and entertained. I can’t bear to see him hurt. My heart aches when I see him wince or flinch when he’s moved or just simply lying down.

I know each day will find him just a little stronger, and that we’ll be a little better at moving him and taking care of him. I just want it to be the end of summer and to hear his surgeon say she’s removing the casts. There’s still more after the casts come off but it’s more manageable and his body won’t hurt anymore.

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HOME
June 1, 2015

My husband and I have different opinions when it comes to alternative medicine or wellness.  I have a higher interest and intrigue which he tempers with a big does of skepticism.  With Cole’s surgery looming in the not so distant future (June 18th!), I find myself researching ways to make him comfortable both in the hospital and at home for the weeks of recovery.  I’m also researching supplements that can help heal bone, joints and tissue, like tried and true Vitamin C, zinc, and bone collagen.  I’m not a quack but I do believe that supplements can be highly beneficial.  Where Cole’s concerned, my tendency is to be more conservative in my choices.

While I’m willing to try herbal concoctions and am happy to drink thick green things, I keep my research for him to things that have scientific evidence of enhancing healing.  I just want him to feel okay, keep his immune system up and for the bones and tissue to heal well.  I worry about this immune system because he’s going to be fairly immobile for nearly two months, which in itself is hard on any body.  He’s used to moving around quite a bit and loves to stand and walk and move his body.  Stagnant bodies are more susceptible to illness.

I’ve also stocked up on a lavender based sleep spray that Cole and I love.  Hospitals smell so, so, well, so much like hospitals, and they’re anything but relaxing or calm.  I’m keen to see if something as simple as aromatherapy can help him feel a little more relaxed at a time when he’s going to be anything but.

Because music is so important to Cole, I’m creating some playlists of favored songs with the hope that even if he’s drugged up and dozy, softly playing tunes that make him happy will promote some calm for him too.  I’m hoping he’ll just be in the hospital for a couple of days.  Home is a always a better place to be for healing.

That said, the same interventions will be useful at home, especially during the first week when pain management is the main focus.  I’m hopeful that a peaceful, calm, softly fragrant home will feel nurturing and comforting to him.  I sound like I’m creating a spa environment for him!

I guess in a way I am.  I just want to make this major surgery as easy on him as I can in whatever small ways I can manage.

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RAININ’ IN MY HEART
February 18, 2015

The past few days kind of took the wind out of my sails.

We were scheduled to have a neurology appointment last Friday, which was confirmed by robocall from CHLA on Wednesday. We arrived on time, checked in, sat for a while, and then Cole was called for the usual weigh in, temperature, blood pressure intake and we were then led into an exam room. We again sat for a bit until someone came in to inform us that our doctor doesn’t work on Fridays anymore. She changed her day. They had left a message at our home mid-Friday morning. Not particularly useful since my husband and I both work, and neither one of us checks the home messages until we arrive back at home at the end of a weekday. Why do all of the forms ask for alternative phone numbers if they don’t use them? Mind blowing…

So they kindly gave us the first open appointment, Tuesday, her new day, at 12:15. We accepted the appointment. Sadly, having missed half of a day at work Friday, I couldn’t attend this time. We also had a morning orthopedist appointment, which I did attend. So no school or work for the boys. Frustrating but both necessary appointments.

The orthopedist appointment left us with hip repair/replacement surgery on the books for June, along with some other smaller surgical procedures that will leave Cole stronger and better able to bear weight, walk and sit more comfortably. This endgame the most important thing to remember during the six or so weeks of full leg casts with a bar between the ankles during the summer. This will be the second “bummer summer” Cole’s had in four years. He had similar surgery the summer before 4th grade.

Oh how I wish I could spare him the surgery and recovery. The first couple of weeks are the worse in terms of managing pain and finding the best ways to maneuver the boy with his casts and bar around the house and keeping him comfortable. Then the boredom starts to set in. Once he’s feeling better and off pain meds, the trick then becomes to find ways to keep a sedentary him entertained.

The neurology appointment happened, and despite videoing some of his seizure activity, it turns out that there’s not much that can be done. We can change medication to something that has more significant side effects, including potential liver and pancreas damage (so regular blood work) or contemplate an implant device that can be effective at calming seizure activity, but takes up to two years to get there, or leave him on his current medication. Given the now upcoming surgery, my vote goes to status quo. It doesn’t sound like the other options are better at the moment so my instinct is to wait until the orthopedic event is over and then get more into the brain activity.

Can someone just tell me when enough is enough for this boy? He’s been through so much, and takes it all in stride. It would be nice if something just went easily for him sometimes.

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