The Privilege

The air was difficult to breathe; heavy with tension and with a denseness of uncertainty.  The fear of the unknown and the anxiety stifling our very breath.  We stood in unity, hands held, watching with anticipation. As the following moments unfolded, I witnessed something so beautiful it is hard to capture in written words.

Yesterday both of the boys were with their dad as he was removed from life support. After each boy said their goodbyes we stood in unison and watched the process through a window in the ICU unit.

The heaviness in the air was suffocating.

As we stood together, I reminded the boys that their father was there to help them enter this world, and now together, we get the opportunity to be there as he exited.

Moments following his head turned, sedated and confused his eyes shifted our way.  We all held our breath in stillness.

As if the time has stopped, I watched as my youngest son walked towards the window.  He placed his hands on the glass and gazed into the room.  With purpose and poise he re-entered his father’s hospital room.  I watched through the window as he spoke directly to his dad. I saw his dad look at him.  The space became still and light.  Slowly my older son joined his little brother. Side by side my two young men comforted their dad. They held his hands. They leaned over the bed fearlessly. With their hearts wide open they spoke to him and they loved him. Completely setting aside any of their own heartbreak that spanned years of disappointments, they gave their father the gift of unconditional love.

I witnessed my two boys elevate beyond any fear and open their hearts–wholeheartedly–to the space of compassion and of love.  They each faced this experience with courage and with grace.  In the following thirty minutes, I watched as they fully embraced their dad and the experience of death.  I felt the lightness in the air.  The peace enveloped all three of them and the healing between them happened.  I saw with my own eyes an affirmation of each of my boys integrity, love, compassion and true grace.

I watched as they were each heroic in their unwavering support and compassion for their dad, and for each other.

And what a privilege it was to see.

The Charming Gardener

Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom – Marcel Proust

For years I have wanted to share a story about a man who has made a profound impact on my life during the month of March when it is the Brain Injury Awareness month, but have struggled to find the words that capture the essence of him and also be sensitive to never want to exploit his life, or his injury..

Every once in a while if you are lucky, you meet someone who touches your soul in a place that you may have not otherwise even known existed. I had been teaching yoga to people with brain injuries for many years when I met someone who reached something in me that is not easily described. Of course, each of my students who have arrived for yoga have brought something unique and often profound to my life, but one man in particular has really found a place in my heart. 

It has been my method while I teach yoga to people with brain injuries to not ever ask how they sustained their injury. It is not that such a huge event in their life does not matter to me, but I do not need to know the details. I do not need to know even what their life was like before the injury. Instead, I prefer to just know them as they are now. I want to know what they like, what they dream of, what bothers them, what they long for, what brings them joy, what hurts and what they love. In time as we work together it is not uncommon for the details of the injury to be revealed, or the life they had prior to the event, but it is not something that I seek out. Just as I rarely seek to learn about someone’s past, because it is now that I want to know and be part of. 

Each time I was leaving the long term care center that I frequented weekly to teach adaptive yoga I would often see a man with the most beautiful blue eyes sitting in his chair watching hockey reruns or slowly walking through the corridors, grasping the hand rail, sliding his left leg along the linoleum floor. I would greet him and I would usually get the same response, “hi….yep yep”. Always the same answer. One day I asked him if he wanted to come to yoga and this time, he gave me an adamant, “nope nope”. This exchanged continued for nearly a year. Always “nope, nope”.

Then one day, I got a “yep yep”.

That was the beginning of a friendship and a blending of two people bringing out the best in each other. In time through his amazing family and his own sharing, I learned about his life before his accident and it is my honor to share it here. 

My friend Jim was just a young man with his whole life ahead of him. A recent college graduate, a great new career at a bank, and a nice home. This elite athlete who had his eyes on an Ironman, who was a former college hockey captain, and friend to anyone was welcoming in a life that many dream of. Surrounded by an incredible family, life long friends and a passion for being a competitive athlete, the younger Jim was a man full of dreams that he knew he could achieve. 

But, in a split second, the life he created was shattered. A training ride on his beloved bicycle changed everything when he was struck by a car. After months and months in the hospital and in rehab, Jim was able to regain some of his skills and returned miraculously to his love of running. With the help of his family and friends, he was able to do some of the things he loved and had some amazing successes through his recovery.

His next hurdle would be the massive seizures that would prove to take away the progress that he had gained physically, and with his language and memory. More work, more struggles and more setbacks. 

When I met Jim he had recently suffered a massive seizure that caused major damage to his brain. His language was stuck on a constant loop of repeating the same phrases over and over, or he would have outbursts that were either bouts of laughter that was uncontrollable, or fits of rage. Physically, he was struggling to walk and use his left arm. Cognitively it was hard to say what he was able to retain since his ability to communicate easily was greatly impacted. 

When a portion of your brain is removed and the misfiring neurotransmitters from repetitive seizures, it is a miracle to witness all that he is able to do. He may not remember what he had for breakfast, or what year it is, but he can tell you the details of his favorite hockey team, the names of his beloved college buddies, or the exact model of hockey skates he prefers. He will laugh at your jokes and even crack a few himself. 

It is hard to capture the resiliency of his spirit. The best way I can describe it is despite all of the struggles and all the loss he has endured, his spirit is as loving, as devoted, as connected, and as grateful as it ever was. His smile can light up a room and the second you remind him that he is a champion, he beams and tries even harder. His confidence in himself marvels me.

I have never once heard him complain about his life. Never once. Instead, he is a light. He bears goodness on anyone in his presence. He brings out the best in me, I know that. He has become my version of the charming gardener who brings out happiness and blossoms in me.

Jim’s life was on the path much like yours and mine. In an instant it was all gone. And yet, he is the kindest, most humble man, who always shakes my hand to thank me and say goodbye as he looks me in the eye. He could have given up. He could have become bitter and resentful. Instead, he is pure grace and pure light.

One day while I was on the floor at his feet working his very stiff ankle, he whispered something to me. I couldn’t hear him so I asked him to repeat it. He quietly said, “I forgive her”. When I asked him who he was talking about, he said, “the girl who hit me with her car”. 

Can you find that kind of grace and forgiveness? Can you live your life without a complaint? Can you be resilient to the tragedy and loss of your own life? Take a lesson from my friend Jim. He knows the way.

Being the Voice

The last three months have been grueling trying to manage an appeal to the lawmakers, keeping my girl safe with 24/7-all-on-my-shoulders-never-a-break continuum, and myself healing from major ankle surgery. Oh, add in working tirelessly as a (now) online yoga teacher during a pandemic.

Through this, I came to be reminded the resiliency the human spirit has, and the never ending advocacy that a person who has a special needs family member must do. Forever.

Sadly across the state this is happening to thousands of families who thought that their adults with disabilities long term home health care would be covered. The state is making huge cuts to this population and their services. It’s truly unbelievable that our lawmakers target vulnerable populations when looking at cutting budgets.

Yesterday was my final plea to ensure that when I am dead, she has what she needs so her brothers can be the least impacted by teaming together to make sure she has the supports in place. Although I wasn’t able keep her long term home health benefits, I got the second best scenario. I lose my CNA job next week and will need to find health insurance, but I will be okay. My next mission is to put the pieces together for my own health insurance and income, but for her and her future care, I got a plan that I feel okay about.

I suppose all the years of advocacy prepared me—and this will probably not be the last time—to be her voice. To fight til the end for what is her rights. To ask questions, seek help and to never give up.

I am honored to be her voice and hopefully this squeaky wheel will help others out, too.

Circling Back

Over a year has passed since my fingers felt the keys type words on this blog.  And what a year it has been.  It is funny how it seemed to me that this blog had found its way down a path that I had felt had come to its end, but the reality is there is no end.  The path continues on.

Over the last year or so my personal focus has been on my businesses since the girl had stabilized in her life.  She developed her independence and was comfortable in her routines that included volunteering, day program, and accessing the community.

Then came coronavirus.

Everything that she and I had come to know and the hard work that we both put in over the years to give her that life that resembled some sort of independence was taken in a matter of weeks.

For the last four and a half months she has been home and her only socialization rests solely on my shoulders.  That means 24/7 her and me. It may seem like nothing to the zillions of parents who have children at home due to this pandemic. And it certainly could be worse BUT, the skills that we have worked so hard to develop fade away day by day.

The subtleness of those skills people may not even notice.  But I do; the lack of advocacy skills when the coffee shop gives her the wrong drink, the volumes of books that she has to take with her everywhere she goes, the multiple showers that she takes every day,  the obsession with weather forecasts, the sneaking of food. And, the final blow was digging out her old dolly.  Yep, the dolly.

So despite my efforts to find somewhat meaningful things to do–paint a dozen birdhouses for the yard, make horribly ugly and useless stepping stones, color pages and pages of detailed pictures, the daily trip to get coffee, and the occasional trip to a store–the truth is we are still very much on the same path.  I supposed it is a path we will always be on.

It isn’t that I don’t see the good that this has brought because I do.  In fact, I get teary-eyed when I think of the grace and the goodness that this event has brought to my life. But beneath the blessings, there is the very real reality that without consistent interactions and a purposeful and meaningful reason to engage with life, regression will sneak up on you, and then you are circling back down the path that you have put so many miles on.

So, when you see me know that in addition to trying to make a living, I am also 100% responsible for the social/emotional/physical needs of my adult with special needs day in and day out.  The break from her I get is on my bike, on my trail, or in my studio.  The rest of my day is spent being her everything.

Be patient with me as I navigate what it feels like to be circling back along the trail.

 

 

The Paradox

It is funny how this time of year always brings a set of emotions that range from grief to gratitude, and everything in between.  This year especially I am finding myself even more in need for solitude as I navigate the sea of feelings that I seem to be experiencing.

This month I have witnessed the most beautiful moment as my sweet grand-baby took her first breath.  It was truly magical.  Within days of being consumed with a love I did not know existed, I learned of those sweet souls I have known in my work who took their very last breath. I was reminded again that within those two important breaths, life offers so much joy and an often an equal amount of pain. Ultimately it is what we do with both that makes our life have meaning.

Twenty five years ago I lost a dream and gained a purpose. While on one hand having a child with a disability has been one of the hardest things I have done, it is also the source of my direction. So the paradox is one that I allow my mind to explore.

It is often during this week every year that I allow myself to ask the “what ifs”; what if she was typical, what if she was graduating college, what if she was getting married, what if she was having a baby, etc.  On the flip side of those questions I look at who she is and what she has given me; purpose, direction, unconditional love, simplicity, and a divine plan.

This paradox of life and death, grief and gratitude, loss and gain, joy and pain always finds me to be remarkable.  I suppose it is just like everything in life–temporary.  So that breath I just took in, I must also be let go.

And so is life.

I have decided yet again that the space between the first and the last is truly where LIFE exists–love, magic, connection, acceptance, passion and purpose. So, we must learn to lean into the joys and the pains because it is just part of what is.

I am incredibly grateful that I have had time alone in the trees to figure all this out and makes sense and peace with what is.  What I have come to know is that all things happen as they should and it is a choice as to what I do with it.

Today, I choose gratitude for being given the gift of my girl. I choose to remain aware of the space between the first and the last and commit to making my life the best it can be. Always.

Morning Offering

Spring is such a rich time of hope.  It lends itself to a sense of newness and birth of ideas and even more, of dreams.  A time when the determination of a plant gives hope to my own life that I too can forge on through the hardened crust and bloom.  Spring is a time of sensational colors and a giant breathe of LIFE.  Too often I find myself forgetting that each morning can be exactly the same.

Morning Offering

I bless the night that nourished my heart
To set the ghosts of longing free
Into the flow and figure of dream
That went to harvest from the dark
Bread for the hunger no one sees.
All that is eternal in me
Welcome the wonder of this day,
The field of brightness it creates
Offering time for each thing
To arise and illuminate.
I place on the altar of dawn:
The quiet loyalty of breath,
The tent of thought where I shelter,
Wave of desire I am shore to
And all beauty drawn to the eye.
May my mind come alive today
To the invisible geography
That invites me to new frontiers,
To break the dead shell of yesterdays,
To risk being disturbed and changed.
May I have the courage today
To live the life that I would love,
To postpone my dream no longer
But do at last what I came here for
And waste my heart on fear no more.
~ John O’Donahue

 

My Introvert Self

I love people—I really do. But I also love taking care of my introverted self and my favorite way to do that is to go into the forest. To commune with the trees and be totally at peace and in oneness by the sights and sounds.

This morning I took off on a solo hike and did just that. I visited one of my favorite tree friends I have ever known. She has been a friend for many years and though I haven’t gone to say hello in a long time, she still greeted me with the same wonderful welcome. I played on the icy trails and I basked in the warm sun. My sweet dog and I crossed over 4 miles of Mother Earth and it was just what I needed to refuel and get clarity on a few things weighing on me.

I love how the sound of my feet crunching the earth somehow brings the answers I have been seeking. It’s like the world stops for a moment and I can listen.

I was reminded again just how blessed I am and how grateful I am that my health has finally returned. I am able to freely walk and enjoy activities without pain. I am so happy to finally say I am on my way!

Of course putting my hands on my favorite tree friend never hurts.

Limitless

Ahhh….with a new year comes a sense of spaciousness that awaits.  For some it is about resolutions, or as one of my greatest teachers once said a resolution is simply a premeditated disappointment.  We have all been there–the vow to lose weight, or save money, or leave the crappy job, or find the perfect mate–only to be greatly let down when a few months into the year those desires seem to fade, or at the least the effort it takes to get the desires diminishes.

I get it.

We set goals, and we often get tired or frustrated because we live in an instant world and we should all know by now that some of the things we typically make resolutions around take time.  Yep, they take time.  And time means we have to be diligent and patient.  Sounds like a bunch of let downs, doesn’t it?

This year I spent way too much time thinking of a word or a vision for my upcoming year.  Rather than get into my heart space, I was consumed in my head with thoughts and ideas. I had a direction I thought I might want to take my year and my life, but neither of the two words that I had in my mind seemed to really hit me in the gut.

And just like that, I was sitting around minding my own business, NOT thinking about a word or a vision and it struck me.  And I mean, STRUCK me.  I felt it in my heart.

LIMITLESS. As defined, it is without end, limit or boundary; vast, infinite. Ahhh, yes.

As I spent the last week contemplating all the ways that I flourished last year, I was in awe of the magic in my life.  From the booming of my business, the falling into place of my personal life, the welcoming of a new life as a grandmother (what??) and the fullness of my bounty , I am in deep gratitude for all that I have created in my life.

Of course there are still really hard days.  There is still the reality of having a child who requires supervision all. the. time. And there is the bigger picture of that puzzle that I can worry about from time to time. There are still days of pain and discomfort.  And as part of being human, there are thoughts of lack or limits.  It just is.  I no longer deny those things but rather embrace them as part of the paradox of life.

As I look into the blank pages of 2019, I take in a deep breath.  I welcome the emptiness and vastness that awaits.  I feel hope with the open fields that are there for me to begin to walk into. I am ready.

 

Freedom

It has been FREEDOM to finally be back on the trails, hiking where I want and for as long as I want. I am not limited by pain or endurance. I am back!

Being in nature is so soulful for me. I find my clarity, I am fueled with inspiration and I am so deeply grateful.

The patience and work I’ve done to get here brings tears to my eyes. The grit I didn’t think I had astounds me and yet, I know that we all have that same grit inside of us.

Dig deep. Listen. And seek out things that support you and your journey.

Along with a great mindset, hard work and tons of support, I am also LOVING that my body has responded so well to a blend of essential oils that have reduced all my discomfort. I am free!

The Loss Never Really Ends

I suppose this all comes up since my kids are now all grown and have moved into the next phase of the their life where major life decisions are usually made and their adulthood really starts to take shape. Add to this acknowledgment of their next life season, with the start of a school year I usually have these super strong mothering inklings that fill my head with memories.  The long ago time when packing lunches, new backpacks and fingers crossed for the favorite teacher where the talk of the dinner table in the late summer.  Of course there is also the horrific memories, too; stuffing my girl into the bus, watching her on the playground with no friends, seeing the other moms in their perfect world getting a good-bye hug from their perfect child.

Recently, I have been wondering about those mom’s and their daughters.  I am curious to know what their daughter’s are doing now and how they fit into their young adults life.  At age 24, are they graduating college?  Planning a wedding? Having a baby of their own?

Mostly, I want to know if they ever think about what kids like mine are now up to?  Does it ever occur to them that they stopped tying their kids shoelaces decades ago? Do they ever stop to think that their days of carpooling kids ended years ago and they can plan their own day based on their desires?  Do they fully take in that when they want to go out on a date they no longer have to find someone to stay with their kid?

In an honest moment I realize that I may have some bitterness bubbling up.  I am sure that they have had their fair share of challenges and having a typical daughter can certainly bring up a plethora of drama.  I know that, and most days I am grateful that I have avoided that.

But today I want to acknowledge that the loss never really ends.  Those lucky families get to experience the next phase of parenting that is often filled with joy and anticipation. As I watch my young men planning important and exciting events in their life, I am deeply reminded that I will not have those same experiences with my girl.  There will not be any choosing of wedding gowns and planning the color scheme of a nursery.  No college graduations and career plans to mull over.  Heck, it is rare to even get a conversation beyond the basic needs of the moment.

And yet, it is what it is.  I hope that my men will give me a little nugget of the goodness as they embark into the next season knowing that their momma got robbed of some of the greatest hopes a gal can dream of.