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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.




Tuesday, August 20, 2013

Lessons on a Good Life...



My children started school 4 weeks ago. With the beginning of a new year, comes the thrill of so many unopened gifts we aren't yet capable of unwrapping, but they are there. there is the excitement of school shopping, buying the new shoes, doing the prep work that goes into creating that impressive first impression with a new haircut, an ironed shirt (that will forevermore be wrinkled) and the crisp paper, full box of Kleenex and that new sporty backpack and matching lunch bag.

The giddiness enveloped their spirit in finding out the person who would be standing in front of them for 180 days filling them with wisdom, character and new language and letters. It blossomed more in anticipating and later discovering the plethora of schoolmates they'd be surrounded by and as God would bless us, my eldest 4th grader has a best friend this year. (Thank you, God for answering that one!)

It is a most sacred time. With every new year comes lessons in life my children inevitably will not learn from their textbooks nor from the dozens and dozens of minutes and hours their homework will supply. These lessons will come with time, with success and failure and with a whole lot of growing only the seeds of learning can nurture. This is life.

I too, have begun a new year. Not only have I welcomed the first anniversary of Generation FORTYtude, I have stepped into a new school, myself. I am not buying a backpack or new clothes, but I am certainly experiencing that same reverence in accepting and embracing the opportunity for growth and change that a new school year brings and opening up to the transformation I've been forced to make, head on.

My family found ourselves in a new home, a new town...a new state, 5 months ago. THIS...is my new school. And already, I'm learning a lot.

My teacher is the experiences that have begun to mold this transformation and enlighten me to a reflection of myself I hadn't been ready to see yet. I'm still not completely willing or able to look past the surface, but trickles of growth emerge as if to say, Good job, Chrissy! A for effort.

I have learned that my family is far more important to my health, my happiness, my peace and inner joy and light than I ever truly understood. Time is precious. Time is never enough. Time is not counting down until they or I leave again, but being in the now... experiencing the moment and savoring their smiles, the sounds of laughter, the flaws and quirks, the comfortable quiet, and their beings that add safety, soundness and soul to my world. I have learned that I took for granted, so many gatherings that seemed typical, normal, expected and perhaps trivial, never fully appreciating their emotional presence.

I have learned about good-byes. They are painful. Painful in a way that my heart doesn't recover as quickly or as wholly once they're gone. Painful in the piece of me I feel gets lost when the boister of their absence is heard and I know they are hours away again. I've had to say too many of them in these short 5 months and they simply feel as real and raw as the day I drove away. Blue is no longer just a color to my heart. I wish I HAD bought the Kleenex box.

I have learned that my children have more courage and inner strength than any Mommy could wish or hope for her kids. The resilience of their spirits that have resonated and lit up our home is abundant and powerful. In their own transformation and acclimation, they've summoned their superhero powers and strength to conquer their own monsters of homesickness and loneliness... I could never have taught them myself. This is who they are. Their core is grounding and rooted in the every bit of love God kissed them with the day they were born and given to me. I see them in a new light with new eyes; of respect, of a greater gratitude and deeper appreciation for wearing their truest of colors so perfectly and proudly. Each has been challenged with obstacles to overcome in moving to a new home and a new town; leaving friends, family and familiarity, and their adjustment and bravery earns them a straight A report card in my heart, always.

In my heart as deservingly, is my husband. I have learned that he is just as beautiful and perfect as the day I committed my life and heart to him 12 years ago. His commitment to the four of us and to making this a good life is humbling and honest. He gives of every spare moment to get to know his two sons; to teach them to talk like a man, eye to eye, to shake one's hand firmly, and to respect girls, women, adults, nature, Mom and themselves. The last being the most critical of life's lessons. He so beautifully knows his daughter with an exquisite ease and insight, I am comforted in the quiet of the prayers I whisper to God, she'll understand a man's love and what that feels like, someday having had an example so pure and beautiful. He meanders, molds and maneuvers through fatherhood in such a graceful, balanced, eloquent way, my cup runneth over and over and over, watching this spectacle unfold.

Unfolding too, are eye-opening lessons in friendship. They say you don't know what you have until it's gone. Well, my beautiful friends aren't gone, just a little too far away for my liking. I have learned I am not as dependable or reliable a friend as I would like to be, but that those who love you for who you are and understand and accept your flaws and frailties will still be there loving you from a distance. I am so lucky to have such special friendships; some solidified in decades of history while others so pure and golden in their truest of purpose and posture, though still blossoming. Heartfelt gratitude to the friends who have not given up, have not given in, have not given guilt, but have given. I am surviving the loneliness because I know they are with me even though they're not.

The hardest lessons in life are those that challenge our inner selves and dip us into puddles of the unfamiliar parts of our psyches that hide with our childhood insecurities and fears. The little girl of years ago, who is afraid to be the last one to fall asleep, afraid to be the first or last of anything, afraid of not having any friends, afraid of following her dreams. I have been thrown into a new school where I am the 'new girl' and it's up to me to make what my year is going to be. And so with easy and fast distractions, I am learning to make a go of it and see my new self and this new life with hopeful eyes and eager attention. It's an ongoing, deliberate process of push and pull, but transforming and assimilating into who I am suppose to be, just may be working.

And so in looking inside, lessons have emerged I've come to acknowledge and accept in an attempt to empower myself and grow, too. None too profound, but all enlightening and somewhat entertaining to me: I am a country girl at heart. I actually DO want a pick-up truck. I like to read books. I DO have willpower. I can take care of a garden and won't kill everything that's green. I know how to grill. I can find my way around anywhere. I can be alone and not alone. I REALLY love my time with my kids. Nothing bad will happen if the dirty dishes are left in the sink over night. I can hold my own, fishing. I am a force in Corn Hole. I am stronger in spirit than I knew. And above all else, I CAN move away from everything that I knew and loved and understood, and still stand tall and be okay.

Upon driving away from my home that very first time, after the moving truck had rolled away with my life in it and my children and I departed for the hotel, God placed a small token in my heart when on the radio, this song began to play. At the time, the lyrics stabbed so deep and viciously in my raw state, I couldn't appreciate His promise. But as I take hold of what's become of our life and the lessons we've so quickly taken away from our being here in Indiana, growth, spirit, resolve, love, fortitude and perseverance echo gorgeously in the background of what we've made here, a Good Life.



Friday, August 2, 2013

A Letter to my other Superhero

Dear Bubba,

We always talk about superheroes in our home...you know, how we call your brother one? Well he's not the only one with a cape here. I know someone else who is a superhero. He's a young boy who doesn't believe he has the courage to fly, but you know what? He does.

You see, this boy has the same credentials of a superhero that his brother does; he just soars differently. That's the way God intended. He is brave in every day that he wakes up and faces a new challenge his young self is not use to. He is brave in his ability to conquer a battle of anxiety or sadness that might get in the way of his path toward growing up into a fine, young man...toward greatness.

I marvel at this one superhero. His sensitive heart and gentle soul are his kryptonite. It keeps him wrapped in a beautiful bubble of protection against the evils of the world, never letting his goodness escape, but securely feeding his soul to continue to be the beautiful boy he was born into this world as.

This superhero's cape is orange. It has a Notre Dame emblem on it next to the super huge "C" that dominates it. The "C" stands for so much more than his name. It stands for Courage. Cool. Crazy. Cuddle. Cute. Conquer. Captivating. Capable. Careful. Comedic. Complex. Conscience. Conscientious. Cozy. Creative. Compassionate. It serves as the source of strength, this cape...to fuel the fire of his spirit that sustains him. It can be invisible so that when he goes off to Kindergarten each day leaving the security of his comfort zone (Mommy), he can still soar. Through the halls of this new journey that appears as villainous as the meanest monster or scariest calamity.

This superhero doesn't boast of his extra special powers. He doesn't make too much noise in the company of strangers or crowds. He doesn't find a need to be the center of attention nor does he want that spotlight. He doesn't say much or draw attention to himself, but his presence is so amazingly powerful and palpable; full of love, light, laughter and energy that those around him, once they understand him, want nothing more than to be around him forever.

His gifts are great; he can hug like he was born to be the Olympic champion of hugging. He can laugh with tears and snorts that fill a room with joy and make the most sad creature of God's Earth feel better just by being around him. He is smart, oh so smart and he can throw and hit baseball like Jackie Robinson. I'll tell you about that superhero on a different day.

What I admire most about this superhero is the resiliency with which he overcomes the challenges he is burdened with. In such grave times of fear or change, he rises up when he least expects it and I am in awe of how that happens so magically and mysteriously. He breathes through his fear and frail moments with a courage I can see he digs so deeply for, even through the crocodile tears. It's okay to cry. Superheroes do it all the time. Those same tears are what nurture and fertilize the growth of the beautiful person coming up from the roots we planted almost 6 years ago.

This boy is someone I love very very much, Bubba. He has changed my being and brought me more life, fullness and beauty to an already perfect world through my maternal eyes and has made me a better person. He teaches me something every day and I draw from him, a courage myself. He shares that with me. He feeds my soul and is a beat in my pounding heart each day I rise with the sun and sleep with the moon. He is a piece of me, and I am so lucky to know him.

Mostly, I am proud of this boy. I know things are hard for him...sometimes more than others. That's just something else God intended. HE made this boy special and sweet, sensitive and sound in so many imperfect and splendid ways with purpose and a plan; to plant a boy in the world that would make a difference and teach us about what it means to overcome and grow from our trials and tribulations...to let time heal and do its goodness. Time DOES heal and though we want to speed up time and impatiently we are desperate to find the "fast play" button on our internal remotes, we can't. So we have to appreciate the time and be brave in watching the seasons of our life find their place like the colored leaves, the quiet snowflakes, the determined buds and the shy butterfly waiting to spread its wings.

The boy I love, this superhero I dig, has wings, too. He is that same caterpillar right now. He is struggling to understand how this slow process of growth and finding his way will lead him to the comfort of his chrysalis and spectacular flight. But I know he will, even though he doesn't. And that's okay.

I am trusting today. I am trusting that worry will not win and that the superhero I so admire will pass a mirror in his life soon that will give him the blessing of looking into it to see how wonderful and amazing his reflection is. Until that time, I am going to give him a boost on his morning flight each day until he feels strong enough to let go and fly on his own. I trust this day will come, too.

Bubba...you are the boy. You are the superhero. You are the caterpillar and the hero and the sun and the sound of my life that I listen for every moment of my life. You are the music that I sing to and one of the many ordinary miracles of my colorful life and I thank God for you every day.

You will be okay. You will survive this. You will rise above, fall back often, but always prove that a superhero wins in the end EACH AND EVERY TIME. And I will be right there beside you watching in awe and glory that you are mine.

See you soon, Bubbers. Only a few more hours

Love,
Mommy

Wednesday, August 22, 2012

FORTYtude: a Force to be reckoned with


For quite some time now, I have had the "Behold, here come the 40's!" mentality. If you've followed me at all on facebook this past week prior to my turning 40, you would have seen all of my FORTYtude posts and reflections. They are real, folks. They are not some contrived and altar-ego attempt to embrace the aging process or some meek and weak denial game. It's the real thing.

I'm not certain at what point I began to feel this awakening and gentleness toward turning 40, but I do know that it has been a genuine piece of my repertoire for some time. Now, don't get me wrong. These things I know: I am aging. I have far more wrinkles and wears than my younger 30 year-old self. I am graying. I look at pictures of the now me and can feel her life experiences and empathize at how she's faded in some ways because of them. I have physical reminders that I'm 40(I will graciously keep those from you here), oh do I ever and did they EVER step up the week leading up to my birthday and say "HA~ Here we are ya old bag!"

But I also know a few more things I hadn't quite grasped in my younger adult life. Things you can't know or be told or learn about but to experience them through true joy, suffering, tragedy, loss, celebration, bliss, love, laughter and frankly, longevity... See in becoming 40, you take with you something golden and that is WISDOM. You begin to actually appreciate mistakes and misfortune of the past WITHOUT regret because you now have a sense of compassion and gratitude toward them. They have shaped you; molded you into your truer self with curves and shape and beauty and art that you couldn't see when you were 22 or even 32. These mistakes and mishaps have become as I said in one post, the historical landmarks that have guided and brought me to a destination called my life. I am able to say that I am proud of them.

In turning 40, I am embracing a newer sense of self, an authentic one. With authenticity comes a knowing of who you are and of what you are worth. It's a beacon to draw you close to what lights you from the inside, regardless of the spinning and sparkling disco lights of insecurity, jealousy, competition, self-degradation (ETC.) that distract you on the outside. It's a feeling...a gut feeling that you have become and are continuing to evolve into the person you were put on this Earth to be. It's when you can look in the mirror without that shame or lie next to your lover and be...just be...with wholeness and appeal because you don't need the lights off. It's that depth of acceptance.

I have literally been excited to ring in the "new year"! My husband lovingly and supportively threw me a party which was wrapped in everything I had hoped and wanted the night to be about: LIGHT, LAUGHTER and LOVE. I guess you could say that is my Mantra now....

LIGHT: (literally speaking) I've always enjoyed and marveled at the beauty of candles and anything illuminating a soft and warm glow. I think that's why I love the holiday season so much because I get to delve into that side of me and share it with the world! In darkness, that soft reminder that there is glimmer and shine and tenderness around is comforting and peaceful to me. We had paper lanterns aglow, candles and tiki torches lit, christmas lights hanging for ambiance....it was beautiful.

(figuratively speaking) In many goals I'm setting and promises I'm making to myself in FORTYtude, I'm learning to let go and LIGHTen up. Surround thyself with the positive and the peace. the prayer and the profound. Let go of the negative for it doesn't have a place here anymore. Be positive for myself and I'll be able to be positive for others. SEE THE LIGHT in myself. Look in the mirror with grace, dignity and pride with what I see and fight the urge to go dark...dark with thought, dark with attitude, dark with loathing, dark with words and dark with cynicism. It doesn't have a place here anymore.

How are you going to do it, you ask? Honestly, I haven't a clue. I am riding the waves of a better attitude with a lot of risk, fear, unknown and inexperience, because the first person to tell you she's insecure, a people pleaser, a worry wart, a judgemental Judy... is me. I have no misguided or naive misconceptions that it will be easy, but I'm OPEN to it. I WANT this change and therefore feel that the want and te need is half the battle. We shall see.

LAUGHTER: (literally speaking)The old cliche..."laughter is the best medicine" resonates loudly this year. The party certainly had its fill of that sound...the kind that just by sitting back and listening, you know your posse is having a good time. That's what I wanted and that is what was delivered and received....good, quality, healing, fun laughter. For that kind of laughter I believe DOES heal. Whatever pain or circumstance blocking that euphoric thrill is released and let go when you laugh so hard you cry...tears are healing no matter the source. They are God's way of allowing the built up inside us to find its way to a stream of freedom and release...a way for our spirits and souls to touch others and show themselves to the world for validation of what is felt. It is cathartic. It is contagious. It is beautiful...to cry...to laugh...to feel. Entering with FORTYtude, I shall put laughter in its place: the forefront of my life and of my being; where it belongs. Laughter will become my legacy.... for my children, for my HERstory, for myself. Go forth and LAUGH...whether in shrieks, snorts, giggles or in the gutteral...shed thy skin with laughter and live!

(figuratively speaking) In authenticity, you have to have that reality check. She needs to whisper to me that I am not perfect, always poised, or ever-present. She needs to remind the ME in me with gentleness and ease that I am flawed and in those flaws and frailties, I am awesome. So I will LAUGH at myself... a lot. And in balance, laugh at the ridiculousness around me so that instead of making me crazed with bitterness or negativity, I will laugh at its resolve and perhaps think less of it as an evil or burden and let the laughter ease its harsh presence. In the IT I'm speaking of politics, imperfections, problems, pride, people. Yep, people piss me off sometimes.

And then there is LOVE.... I just melt and ease and rellish in that word. Used lightly, it can lose its beauty, but when felt to the depths of your core and profoundly and passionately nurtured and shared, it is the most powerful of all gifts; one to be touched, shared, held, affirmed, received and reciprocated. In moments of my party, I was blanketed in a spiritual high while looking out into the faces of the people I love. With my parents, my sisters, brothers, nieces and nephews, neighbors and friends all present and palpable, I felt LOVED....truly and deeply loved. There is such a comfort in a visual reminder sometimes. We need that. I needed that. The tangible often sustains our beliefs and holds us in moments of weakness when faith is just not enough.

With FORTYtude, I will love some more. There are prizes and treasures in my life who do not receive my love enough. To you (you know who you are), I am sorry. I resolve to work harder at reminding you that I love you and relinguish all of the reasons why I don't have time. You have made time for me. You have remained despite my apathy and I will love you back better. I promise.

With FORTYude, I will love myself some more. It is so very diffiult for women especially, to replace the image of perceptions and public scrutiny and self-loathing and childhood and young adult insecurities with simple and unabiding, unconditional love and acceptance of our beautiful selves. Hug yourself...your dear authentic self sweetly and caress her hair with love as you would your own child. Tell her she is perfect and beautiful and loved in her uniqueness and individuality and I promise I'll do the same. Deal?

With FORTYtude, I will love what I have trouble loving, some more. Instead of inserting harsh words, complaints, poison or just plain and simple adding to the already existing world of negativity and hate around us, I vow with the energy and commitment of fortytude to try to be the love in the room. Replace ridicule with respect... judgement with acceptance,and name-calling and pointed fingers with a quiet tongue and hands that won't point, but rather reach out in kindness. My children deserve THAT woman as their Mother. My husband deserves THAT woman as his Wife. My authentic self deserves THAT woman as her being.


...

FORTYtude requires a conscious effort, presence and state of being and mind. But it doesn't have to be a battle and it shouldn't be difficult. I have felt something shift in me for a while...a calling to be better...to be bolder and to be more brave and with that comes such strength and excitement..a paradigm shift that has actually shifted my core a bit. I think it's a sign of sorts...a renewal and a redefinement of my self to tap into the parts of me that I've always wanted to share and shape but never had the courage or knowing how.

I am excited about the possibilities of becoming a better me! I am excited about paths I may cross and chapters I may read that will tell a story of a better, brighter and bolder woman! Because in the end, the truer I am to who God made me to be...the swifter I am in embracing the change I've come to accept, the gentler I am in letting go and letting God, and the braver I am in lifting the shelters parts of me have hid in for so long, the lighter my life will shine, the louder the laughter will boom and the lovelier this life I live, will be.

Thursday, May 24, 2012

Another superhero....


As you may already know, I am a mother to a superhero. My son Jackson, was diagnosed in the fall of 2009 with a rare form of juevnille scoliosis called Progressive Infantile Scoliosis. Upon hearing the news, our world shifted, our hearts cracked and our lives changed. No parent wants to hear that their child is nothing less than pefectly healthy or "normal". It is frightening and altering to not have control in the path of your young child and realizing the journey they'll have before them will be a rough and tumble with risks and fear.

From day one, upon having to watch the MRI techs and nurses wheel away our screaming son after they couldn't get the IV in his arm for his test, Jackson earned his title: Superhero Jackson. It was on that heartwrenching day his cape was symbollically draped upon his shoulders and his flight to conquer began.

Three years later, Jackson, still a superhero, stands straight in a brace reveling in his Superhero glory of success in beating the villain, Scoliosis. He is brave. He is strong. He is mighty.


...
But today, there is another superhero weighing heavy and everpresent in my thoughts and in my heart and in my mind. His name is Max... Mighty Max, that is.



Max is a brave little 3 year old boy in my neighborhood battling a rare form of liver cancer called hepatoblastoma. I do not know Max and have never had the pleasure of meeting him or his parents. My connection to this boy is simply being part of his neighborhood community rallying for his fight. My husband knows his father and has played poker with him, and I have seen and heard his mother speak ever-so-bravely on his behalf, but I am a stranger to this family.

But I am not a stranger to being a Mom of a boy who wears a cape.

***

Today is Max's surgery. The team of doctors will be removing his tumor and all signs of cancer in his littly body. The surgery started two hours ago. And so did the prayers. My mind has been distracted this morning with a constant pull in the direction of the hearts of those stoic parents. I wish today that I wasn't a stranger...for so many reasons.

I want to call them up or text them and find out how they're doing. I want to sit beside them while they painstakingly wait to hear news of how their superhero is doing and hold their hand and pray with them. I want to selfishly be a part of the information scoop so that I can breathe a little easier knowing he's okay. I want to look at Bea and tell her how proud I am of her for wearing the warrior paint of a Mom advocating and standing tall fighting for her baby when all she wants to really do is crawl up in a ball and cry for months...to realease all the bitterness or anger or fear she's held inside.

I have known dark days with Jackson's fight. But in recent months of being a part of the rally for Max...attending the St. Baldrick's event to support his family, in witnessing his friends and community pull together to throw him a HUGE carnival to raise funds to support his family, I have seen the darkest days we had with Jackson fade to gray.

It's humbling and almost unforgiving to have thought that my world was bleak and dark in the face of something not life-threatening my baby boy had to battle. Today I relish and marvel and praise God that it was ONLY Scoliosis. I have never dared to utter that thought on our journey and would have been appalled at anyone else for thinking it...until today.

Because today there is a little superhero, Mightier than all the rare villain diseases put together, I think, fighting for his life on a table in a hospital. There are two parents with unspeakable horror and fear praying so deeply to their core, with unimaginable thoughts and feelings I won't dare try to describe, waiting to hear how their baby is doing.

My thoughts continue to wander off to them....my heart is holding theirs in spirit and in friendship...with love they'll never know from this stranger who lives the next street over. I wonder how they're surviving this. I wonder if they have coffee. I wonder if they can breathe. I wonder if they feel the love...the prayers...the power of the pull their community is sending and lifting up to the heavens for their superhero.

If you are reading this now, please...pause...stop. Take a silent moment and do this right now:

Say a prayer to whomever you pray to that something miraculous and magical happen on that table today.

Send love...love...love..and positive energy and light to Max and to his beautiful parents.

Go find something green (his fight color) and hold it or wear it with pride and power and presence.


Max, You are a superhero. You are Mighty and you are wrapped in love. We are lifting you up, buddy. And I can't wait to meet you soon and marvel at your beauty and your strength and witness you soar above the clouds with YOUR cape billowing behind you as you conquer YOUR villain.











Friday, April 27, 2012

Pain Pain Go Away...

...Come again another day.


April has a way of cleansing the earth and the spirit. With every rain drop, a speck of something tainted in dirt or dreariness from winter's path is washed away. With the nurturing ways Spring's showers have to offer, the spirit of the new season blossoms and shows itself through beautiful colors, scents and song. Life is like that too.


On Wednesday, I would have celebrated a child's 10th birthday. Like many women, I lost a precious miracle and have had to say goodbye to a piece of me I'd never know, but always remember.


I have not given much thought over the last handful of years about my loss. With any pain, it does eventually subside or at least it hides in a corner placing little emphasis on itself defering attention to something greater or worse as it comes. I am grateful for this. It has many a day protected my spirit and mood from danger and has averted what could have been catastrophe.


For the last four years in particular, I was exceptionally focused on trying to live up to being the Mommy of twin boys and a four year-old at the time, that I thought I should be. I had little down time to reflect, retreat or remember. Certainly the date was always in the forefront of my existence come April, but it would come and go with a quiet and still I could gently and ever-so-genuinely appreciate and move on from.


The other day was different. While cleaning out an abandoned closet in the spirit of spring cleaning, I was suddenly and harshly interrupted by a fall of a bag from the top shelf. Frustrated at the additonal mess it had made, I soon went to clean it up. It was then I realized upon seeing some written greeting cards and a hospital release form that I was staring my past in the face. I dropped to me knees.


What darkness to evoke the soul and take her back to shattering times of heartache and sadness!


I am uncertain what urged me to pull out the contents from the bag and continue the plunge into a past pain,but I did. It was at that moment the date of April 25th snapped a synapse in my brain causing me to unleash years of built-up and hushed grief.... tears. TEARS.


Like those annoying bystanders and accident stalkers I begrudge on the highway who have to slow down to be part of the scene of the drama unfolding on their route, I too, had to rush to lock the door and have my drama. My cleansing. Why this particular day, this particular year, this particular moment? I'll never know, or at least I can't quite decipher today, but perhaps in time, I might be able to see it as some sort of sign or whisper from above. (I often do take those subtle hints from God as such signs).


Regardless, I had my April showers. I read through the emails and heart-felt cards sent to me during that sad and dark time. I touched my hospital admittance bracelet between my fingers with a longing for something gone. I dug and crawled and let go to the tunnel of despair I remember trudging through so many years ago as if the loss had happened just this year. I let myself just be. I texted my sister for reassurance and validation that I wasn't alone in needing to recall something so raw. I let myself go...back to feeling sorry for this incredible miracle gone....back to mourning a face I would never exchange soul glances with....back to that Labor day (yes, it's ironic and sick, isn't it.) I had my cleansing.


A few days later, I'm here wondering what great message God has for me. I have many theories; the start to cleansing my spirit as I enter into my forties is the first. Perhaps He is reminding me that like any garden or newly planted seed or the aged and vast fields and meadowlands, it takes the trickle of gentle showers and gushing rainstorms, sunshine, time and nature's blanket of love for growth to occur.