So, here’s where we are- I’ve been in Hudson since February 1st and in that time, we have been back in the hospital three more times, secured (at least for the time being!) a place to live, all while navigating through umpteen phone calls and appointments, argued with a couple doctors and nurses (but otherwise enjoying blissfully competent healthcare!), fulfilled all the required documentation for his Medicaid, and moving forward with his treatment. We are still jumping through hoops with his disability, but  thankfully his caseworker has proven to be a godsend.

And somehow, during this time, I have managed to submit over 40 job applications, online and in person, as well as two temp agencies.  The job hunting process has not been limited to filling out numerous questionnaires and documents; I have also honed my skills at stalking management at several  of the lucky recipients in my search and it has finally paid off. As of last week, I am a part-time bakery associate at the local Winn-Dixie.

Throughout this entire adventure the thing that keeps coming back to me again and again is the love and support we have received, not only from our family and friends, but from many who we have never even met.

A Change in the View

Two months in and things are beginning to come together. I’m no longer filled with overwhelming anxiety every moment of the day and my son’s health has progressed to the point where every second is not filled with the struggle to breathe. We are settling into the community, becoming acquainted with some of our neighbors and, after weeks of filling out applications and relying on the kindness of friends, family, and strangers (how Blanche DuBois is that!), I finally have a job! Our finances has caused many a sleepless night for me, coupled with the ache in my heart as I watched helplessly as my son suffered. Even so, I have counted my blessings every day that events have come about allowing me to be with him during this time.

One of the biggest obstacles we faced in the beginning of our journey was finding a suitable place to live. The trick, you see, was to find a place that would be affordable, with easy access to his medical team, as well as being conveniently located near grocery stores and such. Oh, and the catch was to be able to find a landlord that would be willing to rent to us before I had secured a job!

Well, the universe has a way of transpiring and we were actually able to rent a place in a mobile home park directly across the highway from the hospital and his medical team. It is also within walking distance from several stores, with the bus line passing by the entrance. The other perk, one I had not even considered, was that we are just a mile away from Hudson Beach. Ah, bliss! Right?

The first few days we spent getting settled in (relatively easy, considering all we had were two suitcases of clothing and personal items), and then I set off exploring our new neighborhood.

The first time I walked down to the beach, on a quiet Sunday morning, I had high hopes.

You see, the ocean has always had a way of working it’s magic on me and I was in desperate need of some magic at this point. So off I went, with every intention of strolling barefoot in the sand and letting the waves wash away all my troubles. Once I arrived, however, the view was breathtaking, but my heart would not allow itself to be moved. I stayed for a few moments, breathing in the salt air and turned to go home. After that, life spun out of control for awhile and I had not returned to my muse.

And then, this morning I went for a walk on the beach. The moment my bare feet touched the sand, I could feel her casting her spell on me. I let the fine white sand  massage my soles as I strolled closer to the gentle surf. Finally, I found a quiet spot, a swing with an exceptional view and as soon as I sat down, a large dolphin broke the surface of the water in a glistening silver-grey arch. Then, before I could catch my startled breath, another leaped in the air right behind him. I watched for a full five minutes as more appeared, a pod, sometimes as many as three at a time leaping together in unison, a morning ritual before heading out to deeper water in search of breakfast. After the final leap, some distance away now, I sat back for a few moments watching the water. Finally, I picked up my shoes and walked to the edge of the water, stepping into the salty, slightly chilly froth of waves that rocked back and forth along the sand as I let go, holding myself in the moment. A slight shift and, all at once, I felt connected to the universe and I let her hold me there, soothing my soul. Soaking in the magic that I had come in search of  several weeks ago, desperate to be healed.

 

 

 

Rearranging the Furniture

A few months ago I began this blog as a means to expand my writing in an alternative platform. I had come to recognize various patterns developing in my writing, specifically the undeniable link between my son’s ongoing battle with congestive heart failure and the focus on breathing in my poetry and prose. For the last 8 years, his life has revolved around being able to draw a sufficient amount of air into his lungs, vying for space amidst the fluid that builds up in his chest. With his struggle weighing heavily on me, I decided to title my blog space “Between Breaths” as a way to pay homage to the moment in between, the dots and dashes that make up a significant portion of, not only his days, but in mine as well.

Well, life has a way of coming along and changing our plans without consulting us. And during this time, I have neglected my blog, not to mention my other areas of writing as well. We have now reached a manageable level in my son’s ongoing treatment and I need to pick up where I left off and start anew. I’m not certain where I plan to go with my writing at this time, but discovery can be so very sweet.

All I have to say for now is, let’s move forward and see where it takes us!

Soft Awakening

I woke to the hushed whispers of love this morning. During the night, while I slept the dreamless, troubled slumber that finally comes when the body gives in to stress, my baby sister reached out on social media, setting up a Go Fund Me account to assist with my efforts to be with my son, who lives in another state and is struggling with severe health issues. Armed with a mug of coffee, I opened my laptop to find it quietly singing with hope. I felt a warm swirl of support as I scrolled through comments and shares.

Go Fund Me is a site designed to set up accounts for those grappling with the financial burden of illness, loss of jobs and homes, and other circumstances that require emergency funding. While it is meant for monetary support, there is no denying the spiritual sustenance embedded in this endeavor. It is much more than the donations; it is the heartfelt comments, the shares, the genuine concern popping up in my feed from friends and family and, the most glorious treasure, from many I have never met.

To say “thank you” can in no way encompass what I’m feeling. So, for now, I will simply ride with the music and pray. Namaste

 

Measured Breath

At twenty-three, my son was diagnosed with congestive heart failure, a condition in which the heart becomes weakened and fluid builds up in and around the lungs. This creates pressure on the heart muscle, as well as a constant feeling of drowning which, essentially, he is. For the past eight years, as I watch him go about his days and attempt a normal lifestyle, every breath is measured, counted, treasured. The very act of drawing a breath that is deep and life-sustaining is rare; his lungs hunger for more, beg for it, but space is limited.

Until the time of his diagnosis, the act of breathing seemed to be a given. The human body is designed with a motherboard of automatic responses, allowing our hearts to beat and our lungs to function separately from our conscious thoughts. They are on autopilot and we are not required to remind ourselves to take a drag of oxygen every few moments. Until he became so ill, we feasted on our air supply as if it were an endless smorgasbord.

But now, my son’s breathing has become a tangible commodity, to be counted out like coins, which he regularly deposits in an account that charges outrageous fees and accrues no interest. And because of this, I have begun to count my own breaths; to ponder on that space between breaths, those beats of time when our bodies are soaking up the essential components of the gulp we just took and expelling the unusable chaff. To put these moments into a lyrical cadence, scratch them out on paper, and offer them up as a ritualistic sacrifice as a way to ease the ache that pulls at my chest and tangles my thoughts. And to help me to continue breathing.

More Dancing

Christmas morning. I don’t usually have Sundays free and our family holiday celebrations lean nontraditional, so I’d come to a special ecstatic dance celebration and brought my 9-year-old daughter with me. As the music started and people all around us began to flow and move, I reached out to touch her hand. As if she’d […]

via Present in Our Bodies: Sensuality, Movement, Feelings, and Joy by Christy Croft —

The Dance

I’m sitting here watching  yet another wedding video where the members of the bridal party are re-enacting the final dance scene from “Dirty Dancing.” Yes, done to death. Yes, hokey. And yet, here I sit, breathless, covered with goosebumps, giddy tears streaming. Every time, even the poorly executed ones.

What is it about “the dance?” And not just this one, but every one of the old movies, along with my other two favorites-  Jennifer Beals in “Flashdance,” and Kevin Bacon defying the rules and cuttin’ it loose in “Footloose.” Is it the fantasy? The music? The moves?

I believe that it is the release. Dancing is physical, fluid magic. It is akin to an out-of-body experience. And whether we are the dancer, or simply watching other dancers, we are lifted away, swimming in a wash of music and graceful (or sometimes, not so graceful) movement. Our bodies crave the loose-limbed freedom, and the music wraps around us in a sensuous embrace. Dancing, like yoga, stretches our muscles and our minds.

That being said, I have to admit that I am a lousy dancer. While I may occasionally whip out a smooth move or two, generally my attempts resemble Elaine Benes as she horrifies her employees with her chaotic, jerky moves at the annual office party. Not that I allow that to slow me down, although I usually reserve my wild flinging about for my own solitary entertainment in my living room. Dancing doesn’t have to look good to feel good. And if it feels good, do it!