Staring out at the beautiful full moon upon the water as we sat on the deck during our annual summer pilgrimage to the beach, I find that some things never change. In this environment, walking either solo along the oceanside, gazing at the reflections as the moon lights up the water or taking in the repetitive pattern of the waves and the sounds they make hitting the sand, ones thoughts seem to run deeper. It seems as if we are more in tune with ourselves, our thoughts and the emotions that are connected to those thoughts as we gaze out upon this scene. Perhaps it is in the fact that this landscape changes little from year to year… the waves continue to roll in, the view is an endless one as far as you can see that does not seem to replicate life.  For as we know, from year to year, life changes, people change, grow, fall in and out of our lives. Situations arise that were not in your view last year as you gazed upon this same scene. How can our lives change so quickly from one year to the next? How did we not know what was coming? What do we do about these changes, some full of positivity and light…

(no photo editing here folks… this was the actual sky with storms rolling in!)

and some not?

Can we listen to the repetitiveness of the sound of the waves upon the shore? Can we learn from their unending crashing that like their movement, we are to continue moving no matter what comes our way? Even if the skies darken to an almost unbearable black? Can we be comforted by that thought? If we keep moving, like the waves of the ocean… does this movement keep us afloat? Movement alone does not keep us afloat. It helps, for if we give up that movement, we are sure to sink to the bottom. But won’t we grow tired if we just try and keep moving? Just like if we were to try and keep afloat in a tumultuous ocean or one as smooth as glass. Paddling in both for an extended period in time would tire us out, exhaust us in fact.  

If we set our eyes on a destination and continue to paddle towards that destination, however far it might actually be from you, it will surely keep you afloat longer that just plain paddling. Working towards that “end destination” always produces a better result. What we do not count on when pinpointing and paddling towards that goal is the waves that might be whipped up by the winds, the strong storms that might move in. What do we do then? We look for a life support system, a buoy, something that will keep us afloat for an extended period of time, regaining strength to paddle on, once we have rested. Strengthening not only our bodies but our minds so that we can really concentrate on what the next buoy would be should we need it.

Before arriving at our annual pilgrimage spot at the beach, my son and I attended the Dysautonomia International Conference in Nashville TN. I have now been to that destination city twice without taking in the sites that it has to offer. Our first trip with that same son was for an extended Doctor visit to Vanderbilt Hospital’s Dysautonomia Clinic when we did make a quick trip to the Acme Feed and Seed Music and Event Venue housed in a renovated 1800’s Feed Store… super cool. That was enough for Shane so we headed back to the hotel and then left the next day. This was a similar trip in that the 2 day conference was totally contained to a hotel near the airport. While we again did not partake in the sights and sounds of Nashville, we did find our buoy. Surrounded by people who are facing the same daily struggles, both caregivers and patients as well as listening and questioning the various medical professionals who spoke there gave us a resting spot to take in new information, coping strategies and hopeful research in order to paddle ahead once away from the conference with a goal in sight.

 

This conference held a special meaning for us being that we are from Philadelphia and the key note speaker was Tori Foles, the wife of The Eagles Super Bowl Quarterback Nick Foles. Nick led his team, like his predecessor before, Carson Wentz, as we cheered from the edge of our seats, to a Super Bowl victory earlier this year, bringing home the trophy to Philadelphia.  Here they talked about their bumpy and challenging physical road as a couple with Tori’s diagnosis of POTS four years ago, from their engagement at the Mayo Clinic to their marriage in a courthouse because Tori was not well enough to go through the planning and carrying out of a formal wedding. They spoke of their emotional struggles with becoming new parents and the challenges that involves, as a patient with POTS as well as Tori’s difficulties with traveling and being at Nick’s side in his career. The voicing of their struggles in a public arena was cathartic for all of the listeners and their speaking about it creates more of an awareness of a little known illness that while it affects each and every patient to varying degrees… it affects all of their life paths. Their chronicling of this road they have traveled, their faith and family, and Nick’s journey as an NFL player is depicted in his recently released book, Believe It:  My Journey of Success, Failure and Overcoming the Odds. This book is a godsend in that ALL of the proceeds will be donated to Dysautonomia research and two other charities that are close to the Foles’ hearts. This is another buoy in the paddle towards wellness and living with this illness for all of those affected… thank you for throwing this one out there, Tori and Nick!

This conference also held special meaning in another way in that that I was refueling here to face the battle of the incomprehensible fact that we are being affected by this illness yet again, as our youngest son, after an earlier viral illness in late January quickly fell into a prolonged decline into what was just diagnosed as POTS a couple of weeks ago. As I took him to Doctor appointment after Doctor appointment, the parallels and similarities became eerily apparent as to what our other son had experienced eight years ago. Although many symptoms were different, there were far too many alike. While we were disheartened and devastated to be quite honest with you, to hear the diagnosis from his Doctor, we were thankful for his sake,  that we were knowledgeable with this condition, as was his Doctor so that he did not have to undergo the arduous and ridiculous average 4 year diagnosis time.

 

Readers of my little blog here know that I mix my love of patina and my love of “Life’s” patina  in my posts. Sharing a post about how we give old objects a new life, style an event with a vintage element or go picking on one of our “junking” trips are just as important as posts I write about our life and how it’s experiences… the blessings and the challenges … create the “patina” that each of our lives has. Our experiences enrich us, strengthen us, shape us into who we are. We take the greatest blessings that each of us has been given and the greatest heartache, the highs and the lows and balance them, taking what will enrich us and leaving behind what could destroy us. The challenge is to not let either one of these total opposites smother us but to learn from each. 

 

To all of you paddling hard to keep afloat right now, may you know that I hear you for I am paddling hard as well. Many of us are. May you look into the waves this summer and see that they will keep rolling as you will. May they be a symbol of strength, that you too will keep rolling and reach the shoreline to rest and then roll back into the deep ocean to resurface again. You are strong, you will be buffeted by winds, rains… garbage… keep paddling to stay afloat and look for the buoys that will help you rest…faith, family, friends, knowledge, inspiration. Work together to support each other and find that important common denominator with and in each other… we are ALL human… we are not superheroes, even though some of us who cross our paths may seem to be… we are just overcoming obstacles. 

Sending you a buoy…

~ Meg