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

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

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

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

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

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

 

 

Posted in cerebral palsy, Connectivity, Family Life, Friendship, Joy, Life, Optimism, Resolutions, Special needs parenting, Wiritng | Tagged: , , , , , , , , | Leave a Comment »

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.

Posted in cerebral palsy, Correspondence, Family Life, Gratitude, healing, Life, Special needs parenting, Surgery | Tagged: , , , , , , | 1 Comment »

LIONS & TIGERS (Sleater Kinney)
November 4, 2019

Lions and Tigers and Bears, Oh My!  I haven’t written anything for ages. I don’t really know why because it’s truly therapeutic for me and I could really use the release of fret and fear that I have been carrying around for most of this year. Lions, tigers and bears seem minor in terms of the hurdles and challenges we’ve faced and are facing in 2019.  I plan to make time to write more so will use this first post as a bit of a matter of fact catch up.

Cole turned 18 in September so we spent several months getting things in order to set up a conservatorship so that we can manage his medical, financial and educational needs moving forward once he’s legally an adult.  All of the stress led up to a fairly innocuous court hearing whereby we granted the conservatorship rights.  It doesn’t feel great to know that we’ve essentially taken away most his legal rights, however he’s not capable of making a lot of major decisions on his own so it’s the best option.  We’ve always and will always consult with him and no one has his best interest ahead of all else than we do.  Though we received the official documents, there remains a lot of loops to close and loose ends to finalize, like closing the guardianship that was in place for most of his life.  It feels never-ending.

While all of the conservatorship stuff is going on, we also learned that Cole’s scoliosis has worsened to the point that he is having surgery in December to try to correct it as much as possible. His spine has curved to such a degree that the right side of his pelvis is nearly touching his lower right rib cage.  The distortion has caused his organs to squish together which can ultimately cause a lot of problems, including breathing and heart issues. It’s a fairly major surgery, with his back being cut open from top to bottom so that the surgeon can straighten his spinal cord and insert titanium rods to support the new position on either side.  It’s not without risks due to it being a lengthy surgery (about 10 hours), potential nerve damage, infection due to the size of the incision, but the outcome promises a lot of benefits and improved quality of life for him.  He’ll even end up appearing taller once his spine is straight, a benefit he favors most. I plan to document all of this as much as I can as I’ve not found a lot of parent information about the whole process and particularly the recovery and healing.

In the midst of these big events, we are also trying to prepare for Cole’s transition from high school to the next phase of his education and life skills training.  There are a handful of career transitional campuses (CTC’s) in our area that offer various programs for young adults with special needs where, dependent upon their abilities, they are exposed to different career tracks, in addition to life skills (basic computer skills, creating resumes, managing living spaces, finances, and the like), and continued education.  Cole’s next IEP, scheduled right when he’s due to return following the six weeks of recovery from the surgery, will start creating the foundation of the transitional IEP that will follow so we have felt pressure to make sure we are prepared in terms of knowing what we want for him moving forward.  Part of this has meant touring each CTC to get an understanding of what each offers.  There are two that are impressive, but only one that felt like it would be somewhat appropriate for Cole.  The next step will be to work with them to try to create the path for him that will feel wholly appropriate.  Never a dull moment!

If I stop to think about it and take everything going on at once, it’s overwhelming.  If I allow myself to think too much about the implications or potential outcomes of any one of these, there’s a darkness and sadness that creeps in.  At times it takes all I have to embrace the rites of passage that exist in my life, in Cole’s life.

More on that another time…There’s an amazing boy, young man, who needs me to be strong, smiling and his.  And I will be…I’ll be everything he needs.

 

Posted in cerebral palsy, Family Life, Fear, High School, Independence, Life, Special needs parenting, Surgery | Tagged: , , , , , , | Leave a Comment »

Anthem (Leonard Cohen)
September 14, 2018

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

leonardcohen

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…

 

 

 

Posted in Family Life, Fear, Friendship, Gratitude, healing, Kindness, Life, Motivation, Special needs parenting | Tagged: , , , , , | Leave a Comment »

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!

champagne-toast

Posted in Family Life, Friendship, Gratitude, Life, Motivation, Wiritng | Tagged: , , , , , , | Leave a Comment »

WHEN I WRITE THE BOOK
January 14, 2015

This year I’m determined to learn how to better promote my blog. I’d at least like to figure out how to link it to a Facebook page I created for it. I’ve come to realize that I enjoy sharing my writing more than I previously thought I did. I don’t necessarily feel like I’m full of great wisdom or extraordinary insights or humor but I love the outlet writing gives me and I’ve come to understand that writers write to be read. While I may not be a writer per se, not yet anyway, I will admit that sharing my words is satisfying.

Writing is simply a medium of expression. Like an art, it’s best when shared. I harbor a dream of completing a novel that I’m writing. Well, of completing one of the projects I’ve started over the years. I kept journals for many years and thoroughly enjoy the art of letter writing. I save them and I send them. An actual letter through the post is a treasure. I have letters from my dad, my grandmas, old boyfriends and friends. I save the beautiful cards my husband gives me, and a small scrap of paper where he wrote a sweet nothing to me before I traveled when we were dating. I have a box somewhere with notes passed between girlfriends and I during class in middle and high schools. Words to paper make me swell with joy.

Since my early twenties, I’ve had countless false starts at writing my debut novel. For a short time I toyed with the idea of a collection of short stories. They’re a medium that I greatly admire. The art of the short story is far more of a challenge than a full blown novel because to create a magical short story, it has to unfold so much more quickly but still have the impact of completion. I’ve started all sorts of different chapters of different stories, never to finish any of them. It’s only recently that the idea struck for a book idea that I might actually finish. That accomplishment would feel amazing, even if nothing were to come of it. Just the idea of completing a book…it’s enough.

Posted in Family Life, Life, Motivation, Resolutions, Wiritng | Tagged: , , , , , , , | 1 Comment »