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| nung-nung enjoys a bath at the dog wash fundraiser yesterday! |
“Dear Marilou,
I chanced upon your blog when I was researching on LVNC. I have been diagnosed with the same rare condition just last month, and my whole world collapsed.
I am thankful that I found you as your words of wisdom has given me new hope to live my life more meaningful in whatever time we still have in this world.
I have to manage Uncertainty, like the way you did. With all the blessings, I am sure you will be able to celebrate Ahnung 3rd Celebration of Life next April.
All the best and take care.
Chris ”
I chanced upon your blog when I was researching on LVNC. I have been diagnosed with the same rare condition just last month, and my whole world collapsed.
I am thankful that I found you as your words of wisdom has given me new hope to live my life more meaningful in whatever time we still have in this world.
I have to manage Uncertainty, like the way you did. With all the blessings, I am sure you will be able to celebrate Ahnung 3rd Celebration of Life next April.
All the best and take care.
Chris ”
Thank you Chris for stumbling upon my
blog; thank you for taking time to comment and share what’s in your heart;
thank you for the reminder this morning of how connected we all are in this
magnificent universe … and how we are all touching hearts and souls, every moment,
every day. Your note prompted me to take
time this morning to reflect and write …. Namaste.
I am reminded of the moment, 2 years
ago, when I heard words come out of my cardiologists’ mouth that I had the same
rare heart condition Chris speaks about, left ventricular non compaction … of
the severity and uncertainty of this disease; I am reminded of the moment not
long after that when I heard the word Cancer and the diagnosis of mammary
cancer for my precious Ahnung; and when a new, rare and aggressive Cancer was
discovered less than a year later, and then 6 months later the spread of Cancer
to Ahnung’s lungs ….. my heart, my entire being remembers those moments like
they were yesterday --- the heaviness, the feeling of being swallowed into this
deep, endless, dark hole, of wanting to scream at the top of my lungs of the
injustice and not knowing what to do with the pain, the fear, the anger. I
admit, there were times, at those moments where I wanted to run as far away
from the pain as I could, to push it away, to deny it, to remove its existence
… and to believe this was all just one horrible nightmare. And like I had done
in the past, I wanted to numb the pain and for me that came with thoughts of
drinking. This year, on October 1st,
if we are so blessed to be here, Ahnung and I will celebrate her 8th
birthday and my 25 years of sobriety!
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| Ahnung ... living life fully! |
This morning I remember the hardships,
the words that can in an instant alter one’s life …. But I also remember, just
as clearly, the constant, evolving path and journey that has been full, and
continues to be filled, with so much richness, life and vitality. I imagine
myself walking deep into a forest, with Ahnung by my side … I imagine coming to cross roads and forks
….. sometimes we can make the decision
as to which path we choose; sometimes the paths are chosen for us … but
regardless of what path we end up walking, I know that every step I take with
Ahnung is a gift. A couple years ago a path was chosen for us … yes, both
Ahnung and I may have a shorter path but it is a path that is filled with so
much beauty, life, energy, creativity, and soul; It has now been almost 8
months since we learned Ahnung’s cancer has metastasized to her lungs. She
continues to show absolutely zero symptoms from her cancer … we are due for a 2
month check up at the end of the month. Her last chest x-ray was done in March
where it showed her lungs are filled with tumors, and yet she shows no
difficulty with breathing from the tumors in her lungs. At her last checkup in
May, her bloodwork was completely normal (she is on pain meds … rimadyl,
gabapentin and tramadol … for her spondylosis and luxating patella) and her
lymph nodes also completely normal.
Every morning my sweet girl takes 15-20
minutes to lay by the healing river rocks. She teaches me so much about life,
about grace, and about living in the moment.
Next Friday, Ahnung and I will have the
opportunity to speak to a group of 9th graders at the Animal Humane
Society Summer Youth Camp … to share the work we have been doing with Leech
Lake Legacy and to share Ahnung’s story; just yesterday we were asked by our
dear friend Merry (who led the healing prayer circles at both Ahnung’s
Celebration of Life parties) to come and present to kids at the Episcopal Creative
Arts Day Camp on 8/2 … to share our story. If sharing our story can help even
just one person find hope, lift some dark clouds and fuel that passion of fire
that is at the core of each and every one of us … then both Ahnung and I are
doing exactly what we believe we are meant to be doing.
And Ahnung and I would also like to
take the opportunity this morning to thank everyone for their positive thoughts
and healing prayers ….
and Ahnung would like for me to share
the following video … you would never think that her cancer has metastasized to
her lungs … she claims she beat her little brother Legacy in the race to the
back door!! :)
and Chris, may you find peace and
comfort and joy in the doors that open up when faced with difficult words to
hear ….
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