A LONG DECEMBER (Counting Crows)
November 29, 2019

Very simply – December is going to kind of suck.

Cole is having spinal fusion surgery on December 4th.  The surgery itself is arduous – about ten hours under and a full week of hospital recovery.  He’ll have his spinal cord straighten and supported by two titanium rods from pelvis to the top of his spine when all is said and done.  It’s not an uncommon surgery for people with cerebral palsy, who are largely wheelchair bound.  Over the course of his eighteen years, Cole’s spine has very slowly curved more and more, until the past year and half where it exponentially grew more severe seemingly with the onset of puberty.  The right side of his pelvis is nearly touching his right side rib cage.

As much as I loathe the idea of putting him through another long surgery and painful recovery, the implications of the scoliosis worsening are far more concerning.  It can have a significant impact on his overall health, including breathing (his seems to be a little compromised already) and heart issues.  Plus he’s likely been living with a fair amount of discomfort for a while.

I know other families who have been through the surgery and ultimately, no one has yet to regret doing it and the benefits have been truly impactful in terms of improved quality of life for their children.  So it’s an incredibly difficult no brainer.  From our previous experiences with major surgeries, I know that once Cole has mostly recovered and resumes his regular routine that the much of the hellish procedure and recovery will quickly become a distant memory.  Cole’s very resilient in this respect, which makes us the same.

Several years ago when Cole spent a summer recovering from a huge hip surgery that left him bedridden for two months, I put out a challenge of sorts on Facebook to all of my FB Friends whereby if someone sent Cole a card, note, joke, movie recommendation, really any sort of mail, he would write back – and he did write back to about 150 people all over the world.  It was amazing and it was the best diversion during recovery and extended our support network exponentially.

Christmas is Cole’s favorite holiday.  Our traditional Christmas Eve event at my brother’s house is literally his favorite day of the year and his most favorite evening.  He also loves holiday music to such a degree that I’ve had to limit the listening window to start at Thanksgiving and run up to New Year’s Eve.  He loves sending holiday cards.  So my thought for his recovery this time is to challenge everyone to send Cole a holiday card and he’ll send one back.  It will make him so happy and hopefully help ease the post-surgical pain, discomfort and boredom.

Please write!  We promise to write back…

PM me if you want to send a card.

UNDER PRESSURE (David Bowie & Queen)
November 22, 2019

A friend recently told me about a study that concluded that the chronic stress special needs parents experience is akin to the stress experienced by combat soldiers.  It’s a shocking comparison but the reality of the continued level of care of a special needs child adds complexities to the lives of the parents for their rest of our lives.  I get it.  My son is eighteen now.  Nothing about his care has changed in terms of his needs except I’m now eighteen years older and he’s a lot taller and heavier.

While we strive to provide him with as much independence as possible, and with a rich life outside of home and school, it doesn’t come easy.  As parents of special needs children know, nothing about our children is easy.  We fight for adequate, affordable medical care, inclusive education opportunities (for which we have annual IEPs that require a lot of prep and determination to ensure that our child’s rights are protected, his needs met, etc.), we work hard to maintain friendships and social opportunities, we bathe, dress, transport, transition, entertain, feed, tend to personal needs, fight bureaucracy and support our children in every way imaginable.  We do it with love and care because we love and are dedicated to our children.

The considerations that go into planning anything (restaurants, friend’s houses, travel, long outings) is daunting. You don’t just jump in the car and go (and you can’t send him off in someone else’s car because you need a wheelchair accessible van).  You need to ensure that your destination is wheelchair accessible, that you have access to reasonable bathroom accommodations for changes, that your friend’s house doesn’t have a steep drive way with multi level floors or steps leading up to the house, that the restaurant can accommodate a wheelchair, and more.

I also recognize how fortunate I am to have a partner who shares all of the parenting demands.  He’s highly involved and supportive of both Cole and me.  Not all families have the luxury of two able bodied, loving, involved parents. 

But it isn’t easy and there’s rarely a break.  Our kids needs don’t change as they age.  While typical peers are walking, talking, dressing themselves, making friends, feeding themselves, showering, toileting, going to school, learning to drive, going out with friends, attending concerts or movies or dating, we are still taking care of our kids.  When typical peers are heading to college and moving out on their own, we are still taking care of our kids needs.  We’re just a lot older, which makes some of it harder.

The physical nature of caring for a child like mine is that it puts a lot of stress on your body, especially as it ages, between the transfers, transitions, lifting (my son, thankfully, is small – just around 80 pounds), and the eighteen years of interrupted (and sometimes complete lack of) sleep.  There’s no one else who is going be there, so you just do whatever needs to be done, no matter what state you are in.

A lot of us have kids with medical issues on top of everything else, so when my son exhibits some reflux occasionally, I begin to worry that his Crohn’s Disease is acting up, and when he’s scheduled to have a major surgery that has significant risks and requires a lot of juggling to get pre-op appointments and insurance issues lines up, there’s stress. When he comes home wet from a leaky g-tube, is there blockage, does he need a replacement, or incompetence? There’s also financial stress in that therapies, equipment, supplies and medical treatments, medications and procedures all come at a cost.  And more stress.

My husband and I both work full time as well so there’s the added pressure of ensuring that work doesn’t drop and that we maintain good standing at our respective jobs.  We are fortunate in that we both work for companies that have flex time and where we can work remotely if needed, like from the hospital while our son is recovering from a surgery for a week.  We are fortunate that we have insurance, even if it’s not always easy to access certain benefits.

We don’t have family around who can physically help with childcare.  We have found a couple of people who work really well with Cole and who, when available, are happy to spend time with him and to support us as well.  Of course, at a big financial cost.

The idea of any kind of balance in your life when you have a 24/7 child and work full time is laughable. There’s not a lot of “me” or “us” time in your days – ever.  The notion of self-care is just that – a notion – not a reality.  As vital as self-care is, it’s just not something finds its way into daily routines with ease or consistency.

It’s hard to maintain friendships but I strive to do so because my friends are my sanity and lifeline.  Without regular girl’s night outs, I’d lose my mind.  The conversations, laughter and love feed my soul.  It’s also hard to keep a marriage healthy when, as a couple, we have virtually no home time alone and rely on occasional date nights for some much-needed adult time.  At this stage in life, having your social life still dictated by childcare availability is stressful and simply requiring childcare adds an additional cost to going out. Childcare often ends up costing more than the actual date.  But no going out alone sometimes is not an option.  It nourishes us and gives us much needed time together.  It’s not a luxury.  It’s a necessity.

Following the conversation about the stress comparison, I had what became a heated conversation with someone close to me who I thought had a sense of what my life is like and understood the pressures I live with and the total long term impact and worry exists in my life.  Was I ever wrong.  Instead of compassion about my concerns regarding the upcoming surgery and particularly how hard the recovery will be for Cole and us, I was admonished for getting upset and raising my voice. My heart broke.

While I don’t need or want recognition or accolades for doing what any parent would do in the same circumstances, a little understanding and care goes a long way.  I love my son to the core, and I love being his mom.  Nothing is more important to me than him being happy and living a life that is rich, full of experience, love and joy.  But in that existence, we as parents, also need to have our own little bits of pleasure, peace, and ourselves.  Without it we would implode.

 

STAY UP LATE (Talking Heads)
November 6, 2019

I’ve been solo-parenting quite a lot these past couple of months as it’s one of my husband’s big travel seasons.  He’s been jetting from conference to conference with just a couple of days home between.  The biggest burden for me is the push to leave early on work days in order to get home before Cole’s bus returns around 4pm.  When home, my husband is usually the bus greeter because he has a flexible schedule and works just twenty minutes from home. I work in Santa Monica, which on a good day is an hour drive and on a bad one up to two hours (truly, just to go nine miles!!).  I digress…I could bitch about traffic and rude, unkind drivers for days even though I try very hard to be zen about the commute!

So other than the pressure to get home for the bus, and missing my husband, I kind of love having the time alone with Cole.  We start each day with 5:30 cuddles while he has his breakfast, and then plot out the day while getting him dressed and ready for the bus.  He leaves laughing and happy and I sneak in a little exercise, coffee, shower and head out to the office.  When the bus returns I get to learn about his day, give him a shower (which now includes a shave or two each week!), and then hang out with him until dinner and bedtime.  We talk to his dad, sometimes to a grandparent or two and watch some of our favorite shows (Ellen, Modern Family repeats, baking competitions, Queen Eye) and then bed, sometimes later than we should.  On weekends it’s baseball, dance class, time with friends – sometimes mine, sometimes his, errands, cooking and more hanging out and staying up later than we should.  It’s relaxing, not wildly exciting, but completely soul filling.

I’m not suggesting it’s better than when we’re all together, it’s just special because I don’t usually have the afternoons with him and I don’t necessarily do all of the weekend stuff every weekend when there are two of us to split things up.  Being on our own, just the two of us, taking care of each other while his dad is away, brings us closer.  It allows us to just sink into our own routines that I think help him to deal with his dad being away.  If everything were just the same, it would be harder on him.  He loves his routines with his dad and definitely prefers some of them to me – like showering and shaving – but by approaching the afternoons with our own routine, it helps to not miss that it’s not what he does with his dad.  In Cole’s world, there are certain things that require a specific parent whenever possible.

As much as I love our family three, I’ve come to embrace and even need the occasional times when it’s just me and the boy…

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CONNECTION (The Rolling Stones – also Eddie & The Subtitles did a good cover)
September 26, 2018

I took a basic watsu training class this past weekend, spending the better part of Saturday and Sunday in a 95-degree shallow pool with five other women, who were also taking the course.  I didn’t know much about watsu, other than Cole’s aquatic therapist was also learning it and thought it would be useful for me to learn the basics, so I could use it to help stretch and relax Cole at home in our pool.  I love water, and I love learning new things – especially when it’s something that can help Cole.

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I nervously showed up Saturday and met the others.  Three were women who were already in the aquatic therapy business, wanting to expand their practices and knowledge, one was a mom, who is considering a watsu practice when her four kids are all in middle and high school, and me.  We were joined on Sunday by a woman who does energy work already and has already completed about her watsu training.

The first half hour we learned about watsu and its benefits.  Watsu is a form of aquatic therapy that combines muscle stretching, joint mobilization, and shiatsu massage.  It’s done in chest deep warm water, where the “receiver” is continuously supported by the “giver” (or therapist) while back-floating.  The receiver is rhythmically and passively cradled, moved, stretched and massaged by the giver and water.  Watsu promotes deep relaxation and, in my experience, euphoria.

After the basic introduction we all got in the pool and watched part of a training video, so we could see an actual practice.  Then we began learning the stance, moves and an understanding of the symbiosis of the process.  We worked in pairs throughout the day, switching between being the giver and the receiver and working on different bodies.  The better the giver can connect and adapt to each receiver (every body is different, not just in size but in flexibility and trust too) the better the experience will be.  By the end of the day we had learned the entire basic sequence and practiced each element over and over.  We all left feeling empowered and connected by the day.

Sunday we all reconvened and immediately got back in the pool.  We were joined by a woman who does energy work and has already completed about half her watsu training hours.  Having a sixth person allowed us to all work on our technique and practice with each other while our instructor could move through the pool and give us each more hands-on training and support.  We all gave and received three full hours of treatment that day.  It was amazing.  Unlike anything I’ve ever experienced.

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There’s something almost spiritual in the practice of watsu.  The relationship between the giver and receiver and water is harmonious in a way that at times you feel at one.  Breath plays a part in watsu as it does yoga.  There are quiet times when the giver synchs their breath to the receiver and as one you rise and fall slightly in the water as you breathe.  There’s a deep sense of relaxation and rejuvenation resulting from the treatment and connectivity that transcends the treatment. I’m completely enthralled with watsu. I plan to take more training even if I don’t complete a program for certification.  I just want to be able to give Cole (and other family and friends) the best experience I can.

Anthem (Leonard Cohen)
September 14, 2018

There is a crack in Everything. That’s how the light gets in…

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It’s one of my favorite song lyrics from the Leonard Cohen song Anthem, but a long standing notion that the crack or imperfection is what gives us a path to greater existence. Rumi, the Sufi poet and philosopher, has a similar oft quoted line, “The wound is the place where the light enters you.”, invoking the same idea of imperfection being a road to enlightenment.

I feel like this is the endless journey I have encouraged myself to pursue.  It’s one of acceptance and betterment and I hope to travel it for the rest of my life.  For most of my teen and adult years I’ve struggled with confidence, self-love, and frequently battled myself and losing.  I tend to be my own worst enemy and harshest critic.  I allow my insecurities to shout the loudest and engage them to idly defend me when I feel put upon or angered.  They’re not my best voice because they prevent me from seeing myself or allowing me to be vulnerable.  They’re cruel and lash out.  They deflect.

I’m trying to teach myself to step back and react from my heart even if it means admitting I’m culpable in an action or behavior or that I myself feel hurt or scorned by someone or an action.  Decades of unfettered reaction are slow to turn around but it’s an effort worth taking because when I’m successful, when I approach conflict with calm and sincerity, it’s resolved amicably nearly always.

I want to be a good example for my son, an example of someone who has flaws but is constantly trying to evolve and resolve and flow.  I want him to see that he can be fluid in this way and open his heart and mind to be kind and caring even in conflict or stress.  I want him to know that the pursuit of enlightenment is something more personal and internal for every one of us, but that the result of this endeavor results in a gentler, kinder community and world.

When I was a kid, I was often as described as “nice”.  I kind of hated it because I likely wanted to be thought of as the pretty one or the cool one or the smart one.  No, I was the nice one.  In retrospect I greatly appreciate the compliment.  We should all strive to be the nice one. We should all let the light shine through our cracks…

 

 

 

FEELIN’ GOOD (Nina Simone)
September 13, 2018

I’ve gone through another period of inconsistent writing and I find I miss the outlet terribly.  Life gets in the way of my creativity!  It inspires it as well but when writing is more the hobby and work and family responsibilities fill much of each day, hobbies take the back burner.  Nevertheless, I’ve challenged myself to make a bigger effort to sneak in a bit of writing each day.  The truth is, it benefits my mind and soul, so it’s a valued effort.

I turned 54 on the 4th…While I love birthdays, particularly other people’s birthdays, I don’t generally feel the creeping up of the years to be bothersome.  This year though it did make me feel introspective. Though I do have some self-awareness and keen sense of the things I need to do maintain my health, sanity, and joy, I do have a tendency to shirk some of the responsibilities that are required to maintain myself.  This year I made a decision that I will shirk less and go through my 55thyear taking better care to make time to exercise, write, enjoy my family and friends and to step out of my comfort zone as much as possible.

I’ve actually been attempting to try new things and put myself out there throughout the past few months.  Nothing radical, small steps to expose myself to new experiences, places, and people. It’s been a wholly positive endeavor. I took a girl’s night out grilling class and wound up sharing a table with two women, both of whom are speech pathologists and one of whom had coincidentally worked at my son’s school for a brief time.  What are the odds?

I also took a chance and applied to a writing program that Imagine Entertainment just launched. Beyond the lengthy application, that included a video component, I had to provide a project I would like to develop (I have a TV series idea that I’m working on) and other writing samples.  I was not among the handful selected (over 4,000 writers applied), but I feel proud that I put myself out there and gave it a shot.  I plan to try again for their next session in February.  It will give me some time to get my ideas in to a better format and who knows???  Another coincidence, my company moved into the same building as Imagine a couple of weeks ago!

I look forward to having a successful self-motiving, self-aware, self-caring, self-sharing year.  I want to be present and well for myself, my family, my friends and for any new challenge or experience that comes my way.

Cheers!

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WHAT MIGHT HAVE BEEN
November 27, 2017

I had this flash of anger this morning that quickly turned to sadness. I pulled up behind a car with a license frame that said “The Best Moms Get Promoted to Grandmas”.

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Seems innocent enough but it smacked me in the face. Another reminder of what might have been in my parenting experience.

I don’t generally feel sorry for myself or for the lost parenting experiences I have because I am the mom of a (often whispered) special needs child. From day one my parenting experience has been unique and different from what I had imagined becoming a mom would be like.

Let me be clear, being Cole’s mom is the singularly most amazing experience I’ve ever had, but it’s not without bouts of mourning some of the milestones and joys that typical families celebrate. I’m human.  The moments of sorrow are fleeting and run the gambit.

I could run through the list but it would bore you, or give you cause to pity me and there’s nothing I like less than boredom or pity. The fact is there exists a long list of the joys and successes that fill my heart. They too are unique and different from what I had imagined but every bit as relished.

Becoming a grandmother is one that I hadn’t thought much about since I’m way too young to be a grandmother! HA. I just hadn’t ever registered that I won’t become a grandmother.   Seeing that license plate frame pissed me off, and then I was stuck behind it as I crawled the miles through the canyon to work. It just kind of sucked.  I’m a best mom…and shall remain so until the end…

Happy Monday to me.  Just needed to vent…

 

MANIC MONDAY
October 9, 2017

Generally I don’t have anything against Mondays. I view Monday as the beginning of the week and I tend to like beginnings, as opposed to endings. The start of things, days, events, have an optimism and hope that aren’t as certain to be carried through to the ending.manic-monday

This morning the boy struggled to wake and was grumpy. Granted, I’m not keen on our 5:30 wake-up time either and I find as he matures into his teens, it’s harder and harder for him. Don’t get me wrong he’ll never be the sleep until noon kind of teen, sleeping in to him is more like 6:30am or, gasp, 7:00am! I think he’s just a point where his preference is not be awakened, but to wake naturally, even it were to be at 5:30am, which is what happens often on weekends, when he can actually sleep in! Then, he wakes happily, wanting nothing more than to lounge in bed, watching something mindless, or snuggling.

This morning though, he was a bit of a bear. My solution? Loud music and crazy dancing. First laying next to him, helping to move his arms and waving my hands and legs in the air like an upturned beetle, then me dancing around the room while he shook off his morning blues and eventually laughed, and laughed. On occasion, I can be hilarious! It worked though and to my mind, a quick bit of dancing is a nice way to get the day started.

With that in mind, I haven’t shared the songs that make up my post titles for quite a while because I’ve been so terrible about posting so I thought I’d use this post to do so. Since the last time I shared, here are the songs and artists of recent blog titles:

Manic Monday (The Bangles)
Don’t Stop Believing (Journey)
Swimming Lesson (The Eels)
Sixteen Forever (The Dictators)
Just Like Starting Over (John Lennon)
Changes (David Bowie)
Lean on Me (Bill Withers)
Sharp Dressed Man (ZZ Top)
Summeritme Blues (Eddie Cochran)
Sound of Your Voice (Bare Naked Ladies)
Speechless (Michael Jackson)
Making Plans for Nigel (XTC)

Looking forward to a cheerier Tuesday…

 

 

 

DON’T STOP BELIEVING
October 6, 2017

Today is World CP Day.

I like that there are agencies and organizations that strive to educate and inform the public about cerebral palsy. It affects millions of families and individuals, some more obviously than others, and from my experience is often misunderstood in terms of the perception most people have about CP.

For my family, everyday is CP Day.

Cole came into this world not breathing. Not breathing for twelve minutes. The lack of oxygen to his brain caused injury. In his case, his physical abilities are largely compromised. He is non-ambulatory, non-verbal, g-tube fed, and has fine and gross motor skill compromise. His cognitive function is fully in tact. He is bright, witty, compassionate, loving and kind. He has delays both socially and educationally, largely due to the effects of the physical disabilities, but he has friends and loves school.

 

From birth, doctors prepared us for everything he wouldn’t, couldn’t or shouldn’t do or be. Their collective portrait was not particularly optimistic. We believed otherwise. We poured ourselves into doing everything we could to make sure he had every opportunity to lead a full, happy life.

There’s no handbook for raising a child like mine. There are doctors, friends, teachers, peers, who you can look to for advice, experience and support, and there are more and more non-profit opportunities for social activities, sports, and fun for kids with special needs. There are endless sources on the Internet now and on line and off line parent support groups that give strength, support, and experience too.

There are also countless therapies, treatments and interventions that can help a lot, or more often nominally, and it’s an easy source of parental angst for me, and others I know, how to know whether you’re putting your child through hours and hours of effort that may not go anywhere, for yourself or for the good of you child, and whether or not there is more value in finding some sort of balance between therapies and interventions, and providing your child with a semblance of a normal childhood, spent with friends having fun and enjoying life. It’s a catch-22 situation because you’re always left with that nagging, what if we had tried “XX”? Or maybe we should be doing “YY”.

I grapple with those nagging what if’s but I also do believe that we’ve managed to raise a boy who is exceeding expectations of what his life would be like, and who gracefully handles the lot he’s been handed. It’s not all sunshine and there have been dark periods in both his life, and in our family life, but overall, he’s leading a life that is not wholly unlike that of his typical peers, and for that I am grateful.  I will never stop believing in the power of Cole.  He challenges me to think beyond myself and inspires me to dream.

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SWIMMING LESSON
September 26, 2017

We’re back to our usual routine after what felt like endless birthday celebrations! September is a busy month for us! The celebrating fun as it is, is also exhausting. I’m looking forward to a few weeks of whatever normal life might be considered.

The big fun right now is that we have a giant hole in our backyard, and heaps of dirt, that will eventually become a swimming pool and lovely outdoor kitchen. The project started a few weeks ago and is now hostage to some permitting that requires both DWP and the city to approve, so your guess is as good as mine as to how long that will take.

After years and years of wishing and contemplating the idea of putting a pool in our backyard, my father in law kind of got the ball rolling for us. Cole has always loved water and swimming, and thrives doing aquatic therapy, so it will be amazing for him to have a pool of his own.

It’s also a great social activity for him. He’s at an age where social things have become harder to come by and fewer between. Teenagers don’t really want an adult infiltrating their outings activities, nor are they necessarily mature enough to be asked to be responsible for Cole on a solo outing. It’s hard. But inviting friends to swim and hang out is an easy, fun social activity that they all enjoy and that will hopefully keep his social calendar filled.

We’ve been blessed to have many friends over the years, who have generously shared their pools and backyards with us, so our hope is to pay it forward by having a sort of open invitation to all of our friends to come spend time lounging and swimming. We tend to be home quite a lot and plan to make great use of the new backyard in terms of swimming, hanging out and cooking, and we love to have company for all of those things!

I am already envisioning next spring and summer being filled with afternoons of swimming and goofing around with friends that turn in to casual dinners and night swims. I’m fantasizing about putting a moveable screen outside so we can do impromptu movie nights viewed drifting on floats in the pool or snuggled up on a cozy lounge chair. I imagine my husband and myself doing all kinds of aquatic workouts, including swimming laps, but also enjoying the resistance of water for other aquatic exercise.

I see Cole coming home from school and taking a daily afternoon swim. It will be a fabulous chance for him to stretch out his body and to move a bit after a day in his wheelchair. I can’t imagine how good that will feel to him. The freedom he has in the water is unlike anywhere else. He has more control over himself and more strength in water. And it’s definitely his happy place!

I’m beyond excited about the seemingly endless benefits our backyard transformation will provide! Even looking at the giant hole and mounds of dirt, I can picture the family frolicking in the cool water on sunny days…

I hope you’ll join us!  (maybe not until next spring!)