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Monday, August 25, 2014

Embrace the Challenge.


For several weeks now, we've all been fairly acquainted with three letters: ALS. We've been doused, poured, drowned, frozen and dumped with information and ice. From celebrities to seniors to those still in diapers and those, even still, with four legs who have left wet paw prints upon our floors and facebook pages, we've witnessed cheers of chill and gasps of great ice. cold. shock. We have been touched by the personal accounts of those afflicted and have warmed up after the ice, to opening our pockets and donating.

For some, it's merely a fun exercise in joining and jumping on the bandwagon or having their one moment of fame on facebook, and that's okay, too. Perhaps it's the simple joy of reveling in challenging, a.k.a. "calling out", that one friend or family member who you know won't take part, so we secretly smile at the shame of their decline.


But what has struck me cold, and struck a cord, is the unsurmountable presence of those who reject with raw or bitter disdain, the attention ALS is getting. They seem to sneer at how the spotlight is being "taken away" from a cause near and dear to them, rather than rallying around the troops. This is sad, and to me, more cold than the bucket of ice falling upon them.

I am a mother of three children; two, whom since 2009, have been diagnosed with separate and rare diseases or disorders. In 2009, my then 18 month old son, was diagnosed with Early Onset Infantile Scoliosis and endured what no mother would ask for her young, vivacious and beautiful child to endure for the next several months and years of his life. Just this past February, my 10 year old daughter received a diagnosis of a rare, neurological disease called RSD/CRPS, which currently is being researched as possibly an Auto Immune related disease. The health horror in which my daughter has spent the last five months of her life is nothing short of a trip to hell. She is currently in remission, and for this we are grateful, but this mysterious and cruel beast will be a presence in her life and in her body until there is a cure.

I could spend this time sharing about both of their conditions, but choose not to. I am not writing about their paths or using this blog post today as a forum to bring awareness to their rare diseases. There will be a time and a place for that, but today is not that moment.

I am simply sharing my deep concern and quite frankly, annoyance, at the rare disease community at large... the ones who have complained and curtailed the ALS campaign and success to be something to resent or reject.

We are soldiers in these battles and as comrades, should have each other's back. The war is Rare Disease. We should applaud and approach and celebrate the impact of one battalion , which can ultimately lead to an impact for all of us. We should not be suggesting that ALS has taken away our efforts, but instead has brought rare disease and its gruesome, grueling and grotesque outcomes to the forefront of our societal conscience and has lit a path for the battalions that shall follow.

Rather than ridicule the community for stealing attention, we should be amazed at their creative and masterful skill at using social media and a little bit of ice, to tell a story and get the masses interested and invested. It's working. Instead of moaning about how much water and ice are being wasted, I dare those naysayers to reflect on how much time they've wasted complaining about the ice bucket challenge when that valuable energy could have been used to find out about what ALS is or to brainstorm with others about the next rare disease challenge.

Oh and watch out, be forewarned, there will be other challenges that will follow. Why is that a bad thing? Why must judgment and bitterness be our first knee-jerk response? Why must harsh accusatory statements which I imagine will sound like ..."they're just copying ALS..."..."how lame, that's nothing compared to the ice bucket"...""....etc. echo? When did wanting to emulate excellence become a bad thing?


I am proud of the ALS community and proudly participated in having a bucket of ice poured on my head. I am proud of my children, my husband, friends, my family and the stranger-at- large, who took part to make a difference in the life of someone affected by ALS. Instead of ranting that ALS had stepped on our toes, I dumped...she dumped...he dumped... and then something amazing happened. Discussions started as to what we could do to bring awareness to our community of rare disease.
Ideas were pouring out just as quickly and fluidly as the water from our buckets. Others began to use the ALS challenge as a forum to speak openly about another rare disease and dumped and donated on behalf of someone afflicted with a disease other than ALS...that rocks, too.

Despite the cold, it boils down to something simple. Embrace the challenge, people. It's not a waste. It really is as simple and powerful and massive as choosing to be a part of something beautiful and big and important. It is making someone in the dark and dank corner of their isolation and fear, feel...maybe for the first time, that someone hears them. Someone sees them. Someone might actually listen and learn from and love them. For when you're fighting in this war, there is an inevitable and for many, it is death. Living with that reality is what you call a challenge. A mere bucket of ice water is nothing, nor is sharing empathy rather than envy.

I can only hope that one day, the masses and media outlets will be using up cyber space so powerfully and poignantly to bring EOIS and RSD/C
RPS to the spotlight, and we'll be taking part in more challenges and being called out to do more crazy things as a society, that might inspire and inspirit friends and funds, and bring courage and cures to our family and to others.

So go call someone out. Go donate to ALS. Go get a bucket. Get something. Go donate to something you care about or at least quiet your complaints and silence the sneer. Be a part of something big, but be in it with peace and love.

I challenge you.

www.alsa.org
www.luckycastclub.com
www.rsdsa.org
www.rsdhope.org
www.powerofpain.org

Monday, August 18, 2014

Happy Birth...Year

The other day I had a dream. My present self was speaking ever-so-candidly to my past self; maybe about 10 or so years back. She began to explain her future to her and paint a picture of what her life would inevitably be:

You will be living in Indiana, happily married.
You will no longer be teaching; you will have already retired to stay home to raise your children.
You will have survived cancer.
You have a ten year old daughter and twin 6 year old sons.
Indy has passed away and you have 2 black lab puppies.
Two of your children have rare disorders or diseases and you've had to hurdle over very painful and foreign terrain to find your way through those health crises.

"Am I happy?"
Yes.
"Am I healthy"?
Yes.

Both in the dream and when I awoke, my breath was taken for a moment and I felt. The emotion wasn't one I recognized, but I think I was perhaps taken aback by the changes that had taken place...the paths in my life's story that re-directed so far from the ones I had tried to write for myself. But I suppose that's really what life is about. We cannot write our own story, though we try and ever so arrogantly think we have command of the situation. We do however, have power to place ourselves on a certain spot on the map, but once we've been placed, the landscape changes so suddenly and leaves you lost, or found, or excited or scared; depending on how adventurous or comfortable with the unknown you are.

It is a whispering into my soul, this dream. To me, it's an affirmation from within and above that today is a day I shall celebrate. And I listen more closely to the sounds of the day; not birthday songs and wishes with balloons or streamers, but the song that shares the story of how I came to be and the evolution of my life, even just this past year.

When these memories of the last handful of months trickle in and then splash through relentlessly flooding my heart, I am left weak with gratitude for our blessings, and more importantly, lessons in life you only learn through loss and pain. Those are the gifts the stars left for me to open today...the messy wrappings strewn all over; evidence you've lived.

Today, though I am full, and happy and content, humbled by loving and friendly wishes and the companionship of my loved ones near, I am more profoundly affected by the lessons this dream stamped on my being:

Life can be turned upside down in a heartbeat leaving you holding on for dear life to whatever faith you have.
My children are the gold and silver and everything beautiful in my treasure box and the core of who I am.
Health is never something to be taken for granted, Death is both a blessing and a devastation to the heart, and friendships are fragile and should never be left to fend for themselves.

Human kindness is palpable and present though it may seem hidden in the dark violence and cruelty of the world, but it will pour over you and quench your thirst for it.
God and His angels beautifully changed my life and gave me the world when they sent me my husband.
My Mother and Father are the roots of the tree that sustain, shelter, protect, nurture and beautify my soul and I still desperately need them even at 42 years of age.
Music is the breath that saves you when you need resuscitation.
Prayer is powerful and Hope heals.
Puppies are precious.

When you fight, hope, believe, pray and stay rooted in all that matters, something happens.
Strength often hides within, but shows its greatness in desperate times.
There are such things as superheroes and warriors and they exist in little people with huge, resilient powers.
When you make peace with what is to be, your life changes and miracles open up like budding roses around you.

There is NOTHING worse than tough love.
When you have seen one child suffer, your soul is changed forever; when you've seen two...some part of it breaks away for good.
The everyday miracles appear before you when you're facing hell. They help you appreciate the mundane and the magnificent even more.
A person shows their truest of colors in the face of adversity and sometimes you must lower your expectations or lessen your standards... even of the ones you love.

I have learned that at the end of the day, in the middles of the quiet of the darkest most dreaded night, when you feel lonely, afraid and as if your world is falling apart, the sunshine in the morning, the deep breath, and a moment with your stillness, will get you far.

I have learned that my being is better by being around my kids, my best friend, my dogs and my comfort.

I have learned that comfort comes with time and familiarity and patience.


I am captivated in the story I'm reading of myself....wondering where the next chapter will take us, though finally understanding quite well, the epic surprises and twists that lead to gasps of joy or jars of pain, still make it beautiful...because it's mine...because it's ours. Because when the world slows down and the rain turns to just a gentle sprinkle and the stars blanket the darkness that appeared so scary and ominous, there is joy. There is life. There is strength and hope and recovery. Grief will turn to gratitude and pain can emerge in us, something so unexpectedly profound and promising.

Today is my birthday. Today is my birthyear. To begin again with new eyes and new perspective. To cautiously and carefully use the past to protect the future. To let go, and let in, the light that shines within.

Happy Birthday.

Happy.