THANKFUL (Kelly Clarkson)
November 26, 2019

Thanksgiving has become a holiday where we, my pod of three, frequently find ourselves trying to figure out how and with whom we’ll celebrate.  For a number of years we joined extended family for a chaotic feast, but it wound up not being quite right so we hosted a couple of dinners ourselves, inviting other families and friends who were similarly without plans.  We’ve been invited to share with the clan of a close friend several times, a dinner that was always warm, festive, and full of great conversation and cheer.  The clan has since grown considerably so the dinner is now relegated to clan only, which seems right.  Last year we again hosted with a couple of families, one of which was transitioning via a divorce and in need of a new experience to help get through the holidays.  And this year, we’ll be sharing with them and their extended family as guests – though they’re as close to us as family comes – in what may be their new tradition.

Thanksgiving is likely my favorite holiday when it’s well celebrated.  It’s a time of year where we tend to reflect on things that are important and where the best part of the festivities is simply spending quality time with those we hold dear, sharing a glorious meal, laughter, gratitude, and care.  The celebration can languish over wine and conversation, or move to game playing like our dinner last year, leaving bellies full and souls sated.  In my mind, it’s the perfect dinner party…

This year particularly I’m counting my blessings as we are all gearing up for Cole’s surgery next week.  My nerves are right at the surface, so I’ll be spending some of the long weekend preparing the house and freezer for our week at the hospital, and then those first few days home when we’re getting our bearings in terms of caring for Cole and his new back.  We work well once we figure out the best routine so I know it will get easier as we settle home.

I plan to decorate Cole’s room with heaps of holiday decorations so it feels festive and Christmasy.  It’s likely he’s going to miss his favorite holiday celebration, Christmas Eve dinner at his uncle’s house.  The two share a love of Christmas and my brother puts on a wonderful Christmas Eve celebration every year that Cole looks forward to and adores more than anything in the world.  I want to transform his room into a winter wonderland while he’s still in hospital.  It breaks my heart that he’ll miss it this year so I feel compelled to create some new holiday cheer for him to make up for it just a little.

I’m grateful to have a tribe of friends and family who will be around to support Cole, Dan and I through this.

Happy Thanksgiving to you and yours!  I hope you’re festivities are full of love and joy!

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.

 

WITH A LITTLE HELP FROM MY FRIENDS (The Beatles)
September 18, 2018

I saw a post today, shared by a friend in Australia, about a friend of hers who just had a baby. There were complications with the delivery and her daughter has been diagnosed with cerebral palsy.  The post was asking for donations for the baby’s current and future care.  I wanted to write on the post that with seventeen years of experience with a similar child, it’s going to be okay and that despite the dramatic entry and overwhelming sense of the unknown, life will be joyful and their child will be loved and happy.  I held back though because I’m never quite sure if people want to know this while they’re in the throes of trying to understand their new reality.

This doesn’t just apply to this particular situation.  I struggle with it in all kinds of situations.  I have come to realize that often people don’t want to know that there are other people who have walked the path before them and can shed some light on the journey.  I also worry that it comes off as “know-it ally”, which is never my intention.  So I often opt to hold my thoughts.

I, for one, am truly grateful for advice and support, and I cherish the guidance of those who have similar parenting journeys because between all of us working together we have quite a network of research, connections and experience that enriches the lives of our children beyond what one lone set of parents can do no matter how savvy.

One of my fantasies is to one day create a compound living situation, preferably near the beach, with a therapeutic swimming pool, accessible gym complete with an infrared sauna on the property, where other families like ours could all live with their 24/7 adult kids (either in independent homes or with family) and support one another.  Some of us have kids that will likely remain with us for life but there are ways to provide some independence for them within a fixed community and to allow parents to have some independence as well.  It’s a fantasy but not completely outside the realm of possibility.

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We can go it alone but in my experience it’s always better with friends…

 

 

 

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…

 

 

 

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

WONDERFUL WORLD, BEAUTIFUL PEOPLE
October 16, 2017

“Take a look at the world,
and the state that it’s in today,
I am sure you’ll agree,
We all could make it a better way.
With our love put together,
Ev’rybody learn to love each other,
Instead of fussing and fighting.”
Jimmy Cliff

There have been so many natural and human disasters around the world recently. It seems endless and it seems impossible to know what to do to help besides throwing whatever money one can afford to throw. But that doesn’t feel like it’s enough and it precludes any direct connection with the victims, and fall out.

After seeing the devastation in Florida, Puerto Rico and the US Virgin Islands, and the tragic aftermath of the senseless shootings in Las Vegas, or the massive loss of life in Somalia due to two car bombings, we look to one another for answers, comfort, and relief. We hold our loved ones tighter and make effort to let those we love, know we love them. We join campaigns and donate to organizations to provide assistance. We hope that our own cities won’t be the next struck by any kind of tragedy, natural or manmade. And we then we go about our lives feeling we’ve helped.

And we have. Being kind to one another is important and providing much needed funds to relief efforts is necessary. Going about our normal daily lives is also important both for our communities, our families, and us.

But there are some people who think outside the box and make effort to effect change and to impart a different kind of care, the care of action. I am blessed to know one such angel, and I want to share what she did in the wake of the Las Vegas tragedy. She made a pilgrimage of kindness to Las Vegas; where she did fifty-eight acts of kindness, encouraging each recipient to pay it forward themselves, in honor of each of the fifty-eight victims.

The deeds ranged from surprising random diners in Flaming Fajitas with gift cards to cover their meals, to presenting flowers to a senior in an assisted living home, to paying for haircuts at a local Fantastic Sam’s, to bringing pizzas to the first responding police station, to providing her cab driver with a generous tip, that he then donated to a collection his company had going to provide aid to the victims, and so much more. Each deed was accompanied by a note with the name, hometown and age of the shooting victim she was honoring. Many of the recipients had stories of their own to share with her and ideas for paying her kindness forward on their own.

She touched an entire city. She connected with people on a whole different level. The local paper caught wind of her mission and wrote about her. She shared the journey on Facebook and had lots of supporters wanting to help facilitate her passion. She took the idea of helping a step further than most of us even conceive. I know her to be one of the kindest, most caring, friendly, enthusiastic people I’ve ever met and I’ve been inspired by her since she came into my life. I aim to think outside the box like she does. I hope you will find inspiration in her actions too.

58 Acts of Kindness