LOVE AND HAPPINESS
November 9, 2015

I attended a party this past Friday that is hosted by a couple of companies that I do work with.  I didn’t really know that many people in attendance, which is partially why I actually dragged myself to the event in the first place.  More often than not, I can be shy and I have hard time motivating to be bubbly and open.  Not always, and funnily, those who know me might find that a bit surprising.

In any case, I went and I spent a couple of hours enjoying the Santa Monica Pier after dark with nothing but lawyers and bankers, meeting people I’ve been talking to on the phone or communicating with vie email for years.  It was pleasant and really nice to have faces to the names now.  I had lots of enjoyable conversations and feel like it was definitely the right decision to attend.

I had one conversation with someone I consider a friend.  I’ve known him for many many years, though I only see him once or twice a year.  We are Facebook friends so we keep abreast of the shared events in our lives through that, which is really one of the things I most enjoy about Facebook.

One thing he shared with me is that he truly enjoys following my Facebook posts because he believes that they bring joy to people.  I hadn’t really consider that and don’t know that I’d describe myself or my posts as such but I was really touched that it was what he takes away from my shares.  It got me thinking about the interpretation and intention.

i suppose in many ways I do try to find the joy in things, even in dark situations like Cole’s surgery and recovery.  Somewhere in the love and care there are such moments of glee and joy that perhaps that is my intention in the way I share things.  It’s the way I try to live my life as well.  It’s not perfect, and it’s never going to be perfect but that doesn’t mean that there’s not infinite possibilities for happiness and joy – for hope.

I also tend to feel like even though we struggle, and have tough times, and life’s not always easy for us, or for Cole, there are so many people in this world, in my community, who have it worse.  Much as I enjoy a good bitch fest and the occasionally wailing and moaning about something, I never take it that seriously because I do always believe that it will all work out in the end.  I have hope.  I have joy.  I have love.

SWEET DREAMS
November 6, 2015

I feel somewhat validated! For years I’ve complained that the massively interrupted sleep I get is the root of a great many of my downfalls – moodiness, forgetfulness, weakened immune system. Cole routinely goes through bouts of insomnia, or spells when he randomly wakes up at the same odd hours in the night for a long enough period to fully wake me, and then goes back to sleep, while I lay there struggling to do the same.

Even today, we we’re up for hours when he decided 2:45am was a good time to wake! I grabbed an extra hour around 6am before I had to head out to work, but I’m greatly missing those few missed hours!

On top of dealing with Cole’s sleep issues, I hit the age or stage in life where I’m occasionally plagued with insomnia due to the hormonal changes. You ladies of a certain age range know what I’m talking about! It basically sucks to feel quite young at heart and mind, but to have your body remind you that it’s aging whether you like it or not!

Anyway, for various reasons, I don’t think I’ve had an extensive period of time where I experienced quality, uninterrupted sleep. And I’ve blamed it on any number of my behaviors. My husband has often just looked at me like I’m somewhat crazy but now Time Magazine has published a study showing that even just a single night of interrupted sleep can have negative effects on your body and mind.

Interrupted Sleep May Be As Harmful As No Sleep

Now, if only they could provide some natural and realistic interventions that would help all of us who have our precious sleep interrupted!

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REINVENTION
November 4, 2015

I seem to reinvent my career every so often. It’s not so much a conscious decision to do so but circumstances in my life seem to find me in different roles periodically.

I started my working life as hairdresser, which quickly evolved into my teaching beauty school because my family owned a small chain of cosmetology schools. Besides teaching, I learned a lot about running the schools and managing as well. I even helped to develop and launch an inter-school hair show, complete with product vendors, demonstrations from industry leaders, and a student styling contest aptly named Style ’88. When my family sold the schools, I too left the business. I started cutting hair when I was in high school and by the time I was in my late twenties, I became burnt out.

Unsure of what I wanted to do next, I accepted a job opportunity from a family friend who’s law firm was overseeing an entertainment company and sort of fell into my next chapter. I started as the receptionist at a small international film distribution company and quickly moved to another company, assisting the president of sales. I was then given the opportunity to handle sales in some of the smaller international territories, and my career in international film distribution took off. An actual career was born. I traveled to places like Cannes, London, Milan, and Budapest on an annual basis for film markets and festivals and enjoyed studying the film culture in the various countries where I handled sales. It was an interesting career for quite a long time.

When Cole was born I was running the international division of a distribution and production company. I had not intended to become a stay at home mom but the circumstances of his birth, and the reality of his life, kept me home. We spent the early years doing every and any early intervention available. Besides the barrage of therapies, we went to an inclusive co-op infant toddler program, moving then to the inclusive pre-school. We did acupuncture, massage, and aquatic therapy. We started hippo therapy (equestrian, not hippopotamus). I spent seven years home with him, learning to be his mom, his advocate, his therapist, his caregiver.

Eventually, however, he didn’t need me in the same way. He embraced every ounce of independence he could find. He started staying in the aftercare program at school, taking enrichment classes, playing with friends, and doing homework. He wanted to stay at school until they threw him out. So I started consulting here and there at first and eventually found myself in a full time job in the same international distribution arena but now doing contracts and financing instead of sales. I was able to have some flexibility in my schedule and no travel. Perfect for my family life.

Many years and two merges later I’m still fortunate to be working doing contacts, financing and more. I like to joke that I’m a lawyer by day (sans the law degree of course). Most people who do what I do are in fact lawyers but there are a handful of us in this business that are laymen with a decent grasp of the legalese. It’s challenging and familiar at the same time. I work with a group of people I really enjoy, and I have some flexibility. I’m in a good place. But that restless feeling that I wrote about a couple of days ago is seeping into all aspects of my brain. What’s next for me?

The whole high school search trauma (also from previous post) has me seriously contemplating climbing up on a soap box to challenge local, state, and federal education boards and governments to do better for kids with disabilities.  We’re doing them great disservice.

I’m inspired by Malala’s stance. Cole and I are reading her biography and it’s hard not to draw some similarities in her fight for education for girls and the need for people to advocate for children with disabilities to have been educational opportunities. Her battle had dangers and implications with higher consequences but the idea that everyone, every child, deserves the right tot quality education holds true no matter who, where or what the child.

If only activism could draw a salary…

I HATE MY SCHOOL
November 3, 2015

We’re in the process of looking at high school options for Cole. Sadly we soon will leave the inclusive nest of CHIME and throw him to the wolves known as LAUSD public high school.

It’s terrifying. The main realization I’ve come to is that children who are differently abled or different learners are not exactly welcome when it comes to high schools. The effort or cost to actually provide any sort of education to this population is not deemed worthwhile.

There are little opportunities to create a class schedule that would allow children who need support, physical or otherwise, in the classroom to learn in a typical high school classroom. In an overly crowded classroom with 45 desks, there’s not even physical room for a child in a wheelchair to maneuver or settle.

Our home school is not a viable option for Cole. Four different local gangs (so I probably don’t need to further explain why he’s never going to go there) rule the campus, so safety becomes a huge concern, and it’s not geared for kids with physical needs. I’ve toured a couple of schools so far and have several more to visit over the next month before we have to start making decisions and applying.

The one thing I’ve come to understand is that there will be very little opportunities for Cole to be included in, what I’ve come to fondly call “gen pop”. He’ll be relegated to special day classes where the classes are slightly smaller, the curriculum is modified to differently abled learners and where he can have someone with him to support both his physical needs and to help him access his classwork.

Part of me understands why high school has to be like this. They’re under-funded; overcrowded, and under-trained when it comes to inclusion. I also have no illusions about my son’s ability to keep up at class level without considerable support and modifications to his work. I do get the simple argument but to me it’s more complicated, and it’s more of a civil rights issue.

No child left behind means that no child should go without an adequate education. It doesn’t seem like our public high schools are even taking the first step towards providing a decent education for children with special needs. There’s a population of over twenty percent of our children who are left without real opportunity to have a true high school education and experience. It’s heartbreaking and it’s wrong.

Besides the placement of being in special day classes, there is little opportunity for any social interaction with gen pop. One school offered the possibility of him taking an elective each semester that would allow him to be in a gen pop classroom. Cole’s a very social being. He thrives on the interaction and friendship from typical children. He’s always made friends with typical kids and has never been a setting where he’s only among children with special needs. His criteria for friendship are all about shared interests and experiences. Even educationally, his typical peers motivate him. He wants to show them he can do things, what he’s learned, what he’s capable of. I fear that relegating him to special day classes will leave him lonely and unmotivated, and eventually depressed.

It sounds dire. It feels dire. I loathe this experience. I know that wherever he ends up, we will be right there in the trenches advocating for everything possible that can make his experience more inclusive and more tailored to his capabilities rather than disabilities. I know it will take a lot of work and diligence. I’m prepared to be the loudest squeaking wheel in the school if that’s what it takes to ensure he has a positive high school experience.

I just wish that there were more interest and support in educating all children from the schools. There are too many children who are being left behind.

SEE THE LIGHT
September 11, 2015

This week has been all about filling my mental toolbox.

I’ve come to realize that if I want to successfully help Cole with is anxiety I need to arm myself with some useful tools and strategies. My approach, generally to try to reassure him that everything is going to be all right and to spell out every step of each day so that he has a complete understanding of the days expectations isn’t working, even just a little bit. Last night I started reading a book about dealing with kid and teen anxiety and they eschewed my instinctive actions practically from the first page, so I have some reading to do this weekend to see if I myself can get a better understanding of anxiety and methods for supporting Cole.

I am also adding some creative tools to my box. I have quite a few DIY home projects I want to work on and while I’m not necessarily a builder, designer, or mason (some involve brickwork!), I do have some visionary qualities and want to build on that. Saturday night I’m attending an art party where I’ll paint and drink wine, both with the intention of sparking my creativity. I’m not a painter, but it sounds fun and I’ve come to realize that I don’t pursue fun enough. I need to play more!

I’ve also recognized that I have a tendency to procrastinate so I’ve been working on moving myself forward instead of being stagnant. The summer left me a bit shell shocked and I felt like I didn’t accomplish any of the little projects I had wanted to take care of whilst being tethered to the home front. Now they are all screaming at me to take care of them!  Each little task that gets handled makes me feel lighter, and brighter.

Even though things are still in flux and Cole’s still not back to his old self entirely, I realized that me standing still isn’t going to help anyone.

On a really positive note today, Cole happily stood up for about ten minutes at his physical therapy evaluation…Maybe he realized that moving forward even just upward, is better for him too!

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HEAT WAVE
September 10, 2015

Fair warning…this is my little bitch fest today…I’m sick of hot weather!

And I’m watching one of my colleagues unload the contents of his refrigerator into our office fridge because he’s without power in his apartment due to the current heat wave. It’s topping 106 in Woodland Hills where Cole goes to school, and close to 100 in the city for the third day in a row.

It’s the kind of heat that has weight and tremendous volume. It hits when you step outside and encloses your being, stifling any desire to move further into its awaiting embrace.

Of course the heat, even extreme heat like this, is not usual to Southern California. I can think of two different years when we had to move to a hotel for a couple of night when our power went out due to widespread overuse.

Despite being a native of Los Angeles, of the San Fernando Valley in fact (I am an original Valley Girl circa 1982 song fame), I find the heat intolerable. I’m not a fan. It makes me cranky, sweaty (and I deal with hormonal sweat even in freezing weather so heat induced sweat just sucks), and lethargic. It’s hard to motivate to do much of anything when it’s so hot.

Cars are hot, bedding is hot, and my office is freezing! Dressing is odd because I need a sweater at work but if I step outside I melt. Being good community partners, we set our house thermostat so that it stays off during the day when no one is home but it takes hours to cool down once bodies are in the house so it’s never really completely comfortable these day.

I don’t like sleeping when it’s nearly 80 degrees in my room. Poor Cole is wrapped up in bracing that’s made of plastic and other synthetics that don’t breathe so he’s reduced to a puddle of boy come morning, though he’s more tolerant of the heat than I am. At least I think he is…Perhaps I’m just more vocal?

Thankfully, it’s supposed to start cooling down after the weekend…for a few days anyway. I have memories of actually hosting Thanksgiving dinners outside in the backyard because it was still nice and warm…sigh.

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…

HERE FOR YOU
September 3, 2015

I’ve been solo parenting for a week now with a few more days to go while my husband is in Santiago on business. After the strange summer we had, all being on top of one another for a full two months, and the quick fire return to our work/school routine, I found myself kind of looking forward to having a little Cole/mom time.

Historically, when my husband travels, which is fairly consistent throughout the year, Cole and I have a pretty easy time. I’m not keen on the driving aspect of it (I’m driving him to school and myself to work – a minimum of 2 hours in the car each morning and then the same at the end of the day!) but love being the one to bring him home from school, go through his day and backpack, run through school and homework with him, and finally have some hangout time together. I usually miss this part of his routine because I get home from work two hours after my husband gets Cole home from school.

The past days have been much harder than I anticipated. The fact that Cole is still so utterly emotionally fragile following the surgery and summer makes everything harder. He’s less inclined to even attempt communicating and collapses upon arrival home.

Friday, the first day of our solo time, he cried for nearly an hour and I was never successful at finding out what was wrong. Even during the weekend, he was clingy and anxious, but I did eventually learn, after many conversations, that one of the reasons he has a hard time when he gets home from his school day (8am-5pm), is that he during the day at school, with his friends and teachers, he makes every effort to not let anyone see that he’s in pain or uncomfortable. He puts on a smile and works his way through the school day seemingly fine. So when he gets home, all of that held back anxiety, pain, and energy just spills out, uncontrollably.

Monday I learned another reason. Prior to the surgery, he spent a good part of his day on his feet in a gait trainer, either walking or just standing, bearing weight. Now he’s spending the entire day in his wheelchair and his body is stiff and sore when he gets home and is moved to his chill out chair or to a bed to sit on. Because he seems to find relief or comfort from wearing the knee immobilizers at night, I suggested we try putting them on right when he gets home to see if that helped with the transition. Voila! Mom’s a genius.

We’ve now had two nearly tear free, whine free post school evenings and I’m looking forward to a third tonight. Even more so, I’m looking forward to taking him to physical therapy this afternoon. He’s been doing it for a few weeks now as prescribed by his surgeon and I haven’t been able to attend. I took him to the eye doctor Tuesday afternoon, which also felt like a treat.

We have a winner!  The new glasses...

We have a winner! The new glasses…

Doctors appointments and therapies used to be my arena before I started working full time, and before my husband started working five minutes from Cole’s school. I miss the connection with Cole and his doctors and therapists.

I’m glad to have the chance to support him this week.  Even when it’s hard, I treasure my one on one time with Cole. It gives us a chance to reconnect and share the simple and not so simple every day moments that when woven together bond us.

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.

BOX FULL OF LETTERS
June 26, 2015

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We arrived home from the hospital to a pile of letters and packages addressed to Cole.  My letter writing campaign idea seems to have struck a chord.  Cole’s received postcards from Hungary, Japan, and Minnesota.   Lots of friends have sent cards, notes, and little presents.  He received a little pink rubber duck with duck jokes (He loves jokes!) from one of my coworkers and lots of other cool things.  The teenage son of a woman I went to middle school and high school with sent some special personal things, and wrote a beautiful letter.  From the looks of things Cole’s going to have lots of pen pals this summer and he couldn’t be happier.

It’s interesting to see how positively people responded to the call to letter writing in this age of electronic everything.  I love a good letter and adore receiving postcards.  Cole does too.  There was a time when he spent a lot of down time writing colorful letters to his friends so they would get mail.  I think for him the impetus was a Little Bill episode where Little Bill’s kindergarten class learned about sending mail.  While I greatly appreciate the ease and convenience of email and texting, there’s something so much more personal about actually putting words to paper, sealing them in an envelope and sending the letter off to a treasured recipient.

Among the notes and treats, Cole received some great suggestions of people’s favorite movies, music and books.  A few friends drew some wonderful pictures and he received lots of love.  We all feel it and are so grateful and appreciative of the effort and kindness.

We’re having fun contemplating responses and finding fun cards and papers to send notes back.  We, of course, would love to have some people keep writing…old fashioned pen pals!  it’s such a great way to get to know someone and to form a connection that otherwise wouldn’t exist.  It’s pretty amazing…