Ariana Carruth's Blog, page 2

The Winds of Hurricanes & Change

    Flexing the earth’s crust, the thirty-three trillion tons of water from Hurricane Harvey changed the course of history. The environmental impact notwithstanding, Hurricane Harvey forced millions onto a completely new trajectory with the entirety of its implications for Houston and the nation still unfolding. As for many, our family was swept us onto a new path of displacement, awe, and loss by the winds and floods of Mother Nature. In the last six months we’ve experienced the transformative shifts and reflections of physical and emotional displacement that one should force themselves to seek when life commands change. 

    “Change”… the bad guy lurking in the dark alley is much too often how we perceive the unsettling flux of something new or different, especially when it is sudden, unplanned, and unwanted. The drop in your gut with bad news or the deep seated premonitions of pending doom approaching are feelings that we want to avoid at all costs. Complacency, even settled unhappiness, is often more desired than uncomfortable, transformative, and even painful change. Yet, change is a vital metamorphosis.

    If we aren’t changing, we aren’t growing. Moreover, I contend if we aren’t changing we aren’t able to live a life in which ultimate happiness and centeredness can be achieved. So we search… we search for new pathways, reignited passions, resilience, strength, and honestly a way in which we can accept change, embrace change, and not need the answers to the unknowns.

    The whys, or rather the unanswered questions, are the most maddening part in the process of change. As our family was swept into the changing tides of a post Harvey Houston and sought refuge, respite, and reflection in another state; the unanswered whys still haunted us as ghosts from our past, present, and future. There were dark moments of doubt, fear, concern, and feelings of helplessness. Frustrations abound, the grief for our life pre Harvey was the reckless subterfuge to our healing, acceptance, and clarity towards a new path. Life had literally thrown us into the winds and floods of a hurricane, and in our futile stubbornness we tried to fool ourselves that we could stand unwavering in a path of destruction. The discovery, of course, was the empowerment of change. Stepping onto a less resistant path, we stopped fighting the winds that had been pushing us back for the last two years and found some calm waters to reflect, rejuvenate, and recommit to our life, love, and home in Houston. 

    Back again, but not the same, it has been a repatriation of sorts into our old lives as further changed persons with new experiences and even new wounds. On one hand it is like we never left as our home, neighborhood, community, and friendships all feel like an old worn glove of comfort, familiarity, and centeredness; and on the other hand we feel forever shaped as deeply as the Earth’s crust is flexed by Harvey. 

    Metamorphic change is upon us all. There is a renewed solidarity in our family unit, and an awakened reminder that complacency can become your own worst enemy and distraction from growth. Additionally, we mustn’t ever commit to action or inaction based on fear. We opened up our hearts, minds, and the doors of opportunity to our next chapters— whether they were in Texas, in Kentucky, stateside, or abroad. Houston, in the end, was our constant in a sea of personal change— change, that is here, desired, and beloved. 

    Taking leaps into the unknowns have been the Carruth way for some time now, but we needed a Hurricane to remind us to quiet the fears and to listen to the constant underlay of cues that exist around all of us. Our prompts were career, education, and family rooted. 

Quiet your apprehensions and listen to the underlay…. what is next? What is your leap? Embrace the metamorphosis.— without the hurricane. And live for the adventure in change! 

(En)abled for Adventure

Recently, I was asked during a job interview what qualifications do I possess for handling challenges and with which could speak to my determination, dedication, and resolve. I wanted to simply reply "I am Avery's mom!", but without context that impassioned proclamation does little to attest to my personal characteristics.  Avery, specifically hiking four miles in the mountains carrying Avery’s wheelchair across streams, rocks, and timber crossings, was the instant picture that formulated in my mind’s eye with the inquiry into my determined nature. 

In the many months during my blog silence, I have obtained a degree, written academically, taken a sabbatical of sorts out-of-state post Hurricane Harvey, traveled the States, and pursued a new career (hence what I can now say was a successful series of job interviews). During that time, the connecting factor in the, what seemed at times, utter madness, was in fact these characteristics of determination, dedication, and resolve. 

2007 bought us Avery and with her bold and miraculous arrival into this world, came an unpublished, learn-as-you-go, book of lessons. Avery and parenting Avery has emboldened us with a drive like no other and a stubbornness and dedication like no other. We simply do not accept the status quo, and we’ve attempted to (en)able our ‘(dis)abled’ daughter every step of the way with our adventurous spirit. The ‘wheelchair has no bounds’ campaign started in the castles of Denmark circa 2008/2009, continued in Norway, Sweden, France, Italy, the Netherlands, Germany, Belgium, back Stateside in Moab, the Rockies, and in our every day life here in the city jungle. She's been hiking, skiing, and well, what is adventure without Disney World?

Avery is Avery and to fully understand what that means you just must meet her. To everyone that knows her she is a spirit to be reckoned with and will continue to defy medical prognosis. Avery embodies strength and determination, and therefore we must continue to be her legs, her voice, and her conduit to the world with equal resolve. We must return the gifts of life that she has given to us. 

Enjoy the slide show of just a few of Avery’s adventures…. May you be inspired to take on an adventure yourself and to live life completely (en)abled.

Taking Back The Focus

Infected with the latest bug and outnumbered three-to-one, I drove towards a labyrinth of city highways and traffic with the children. It was December 5th; a day that I had marked on the calendar for months as the day of Avery’s scoliosis check with notably the best pediatric orthopedic surgeon in town.

Another specialist appointment. Another hostage-like situation without negotiation, snacks or rescue while we wait for hours in a lobby to only be herded into a tiny box as we wait some more— weak, hungry, cranky and wholly at the mercy of the medical team’s schedule.

As we approached downtown, the fog and rain clouds lifted enough to reveal the skyline. My car’s navigation system spouting off every 3 minutes with more traffic alerts as we slowly crept the miles towards our destination.

Stop and start was the game, but I suppose not everyone was on board as I suddenly heard a loud “BAM!” from behind me. Almost immediately that sounds was followed by a “CRUNCH!” much closer to my ear.

My head and body jerked forward, and my mind was swirling with expletives that I somehow kept within.

In the middle of the city on one of the busiest highways, our car sat still. After a quick check to make sure my loves were okay, I looked back into my rear view mirror to see four vehicles piled up and a black KIA loaded to the gills on my bumper.

“Stay in the car no matter what and keep the doors locked,” I said to my tween as I left the safety of the car to meet strangers in a median while the once stopped traffic was now speeding by at 70 miles per hour in the next lane.

My own children safe and everyone well gave relief, but with drivers refusing to let me phone the police and soon pulling away from the scene of the accident tensions were rising.

“Kids, how do you feel about a detour to the nearest police station?”  I asked with irritation but insistence as I knew I would feel better after submitting an official report.  

It would hopefully only be a short detour on our way to the med center. Any mom knows to pad the drive time to a doctor’s visit but no one really expects to need the extra minutes of travel time to make up for a car accident and an impromptu trip to the nearest police station!

With as much excitement as I could muster, I tried to rile up the kids about visiting a “cool police station” in the rain, but really? We all rather have been anywhere else.

Wheelchair and umbrella along with three children I walked into the station to fill out an accident report— which too my welcomed surprise was quick and easy.

Back on the road again, this time without a car accident, we rushed to join the waiting game ten stories high. Sick, exhausted and annoyed from our delay we did all we could do and nestled into our lobby lounge chairs as we waited to hear the only name called that we wanted to hear.

And wait. And wait we did.

Avery made countless friends. Zev played much too much on the iPad. Audry, home sick from school, caught up on missed work. I rested in between coughing fits and nursing my four-hour old Starbucks coffee.

As the sun began to set on a rather long day, it was finally Avery’s turn to see the doctor (or to at least be ushered in to an exam room for the next phase of the wait). As we waited, she continued to lift our spirits with her infectious personality and mischievousness (and eat some paper from the exam table, because this is still Avery, after all).

The x-ray was her favorite part and because she loved it so much, it was also THE highlight to my day. “Up, up and away”, I’m sure she thought as she sat with excitement and anticipation as if she were loading onto a ride at Disney World.

Armed with the tools the doctors needed to evaluate the next chapter in Avery’s health and life, we were escorted back into the exam room.

Eventually, the rock star doctors graced us with their presence, knowledge and prognosis.

Unfortunately, the scans didn’t look good— one might say they even looked quite bad. Anyone could see without a medical degree that her curve had increased to 100% and was encroaching on her lungs and heart. Not a candidate for surgery, our only step is to wait and see the next scan in nine months and to visit a pulmonologist as soon as possible.

Scoliosis isn’t an uncommon diagnosis with Avery’s rare chromosome disorder and she has lived with it for quite some time. What is surprising, however, is how well she is physically hiding a curve as significant as hers and that she remains able to sit upright and maintain a great balance. While often operable, Avery’s physical condition from her chromosome disorder leaves her in a holding pattern until she is large enough to benefit from the very invasive, extensive and often just one of many surgeries to attempt to slow or fix a condition of scoliosis as bad as hers.

I can’t say that December 5th, 2016 was a great day for us. It is understandably difficult to receive the news of a significant status change of health, and no person/parent ever of any child (special needs or not) loves specialist visits, wants to go to any appointment with all of the children, wants to do so unwell or wants to do so in the rain with a car accident and an impromptu detour to the police station. I think this is why I must start carrying candy in my purse for these emergencies. While our life is often a box of chocolates, I also would like to eat chocolate during these life moments.

As many challenging days as we have had over the years, we always add in our own little fun and adventure— often spurred on by Avery herself. When I look back years from now to remember this day, it won’t be the car accident, the news, the sickness or the wait that I will remember. It will likely only be the memory of the pure elation and innocent excitement that illuminated from Avery as she rode the ‘x-ray ride’.

It is the only memory that is truly worth holding near.

Pick your memories and your focus carefully. Your outlook holds the key to today and to tomorrow.

Crepes, hysterics, jewelry, bras, friendship & a note from a stranger

Ah, city centre. . . my home away from home, my city square of happiness, retail therapy, scrumptious food and a favorite spot to meet dear friends.

Monday had arrived and with an iCalendar reminder of “Crepes with Tabers” flashing on my home screen, it was with excitement that we set out on our little summer day adventure.

The plan was to arrive early— with enough time to shop before crepes. We parked in a handicap spot in the parking garage. It was a bit of a parking spot score. Handicap tag hung on our new handicap friendly car, my oldest helped get my youngest out of the carseat while I helped Avery into her wheelchair.

Kendra Scott, a local jewelry store, was first on our agenda. One of my necklaces had broken a few times and while I had fixed it repeatedly it kept breaking. I hoped the store would be able to repair the link once and for all.

Laid out beautifully with exquisite design of white clean lines with splashes of fun color, the store is vibrant and happy. Well, it is for myself and for my tween but not so much for my three-year-old boy or for Avery, my child with special needs.

As we walked in thru the heavy glass doors we received prompt greetings and service. In relaying our needs, Avery was already losing patience with the shopping experience. I knew we were on borrowed time, but no sooner than I realized the clock was ticking did we receive the sweet and unexpected surprise that Kendra Scott would be replacing my necklace with a new one in lieu of trying to repair the old— for no charge. My heart skipped a beat with the joy of the surprise, and I took an extra few minutes to shop for a pair of replacement earrings for ones that I had lost a week prior.

While I shopped, Avery wheeled. And while she wheeled, I grabbed the wheelchair handle to guide her back. And as I guided her back, she screamed, kicked, thrashed—- just a little. Zev, my three-year-old, wandered with a strong sense of mischief on his mind. As he wandered he began to pull drawers, long delicate drawers housing jewelry. And as he began to pull drawers Avery began to wheel further and faster away from me and towards trouble. It was time to go!

Purchase incomplete and replacement necklace not ready, I wasn’t able to leave the store just yet. My oldest— my dear, sweet, often (yet not ever when it really counts) temperamental tween took the littles out of the store and onto the sidewalk while I finished. The clock was ticking even faster now.

We crossed the corner to Lululemon. It would be my 4th visit in an attempt to use a birthday gift card— which sounds absolutely incredible if you know me and my love for Lulu.

To my pleasure, Avery was zen inside the walls of the trendy athletic clothing store. Lulu is a special realm of peace so I would hope all of my offspring would sense the power and beauty of Lulu and grant me a moment for myself. In actuality, it is rare for my littles to be so well behaved in that store, so perhaps they are learning to give a little.

As I left with nothing (again), we headed to IVIVVA, the corporate child of Lululemon. Bras were on the list. Avery wheeled, Zev pulled, Avery screamed, Zev pulled, Avery wheeled into Zev, Zev screamed, Avery wheeled into racks, Zev yelled, Avery pulled clothing from racks, Zev pulled, Avery screamed.

Round and around we went while sweet Audry hurried to try on clothing. Frazzled and fried at checkout, the store rep handed me a handwritten note along with the half dozen or more bras she discounted for us.

Five minutes to crepe countdown, we scurried across another intersection and into the clean, crisp, trendy creperie haven of fresh sweet and savory perfectly executed inventions that is Sweet Paris.

Brie, smoked turkey and walnut crepe with a side salad for me— please. Nutella and strawberry for the tween. Two lemon and strawberry for the littles. No coffee. I am trying to be good. I’ve had two lattes so far today.

We sit. We wait. I open the folded piece of notebook paper from the stranger.

It reads….

I sit. I think.

I count our blessings: the free replacement Kendra Scott necklace, the Lululemon gift card (even as unspent as it has gone), the trip to IVIVVA— difficult with the littles, but manageable and no different than any day, any shopping trip. I’m grateful for the surprise discounts on our purchase and then the note….

It, so sweet and unexpected, makes me smile and makes me uncomfortable all the same. I want to hide, fall back into the crowd. I want to be unseen. Did my littles behave that poorly? Was Avery that noticeable? Am I different? That different from other mothers?

In the end, I take the note and place it into my purse with the gratitude for a stranger reaching out to a frazzled mom who knows little, fights for the day, and hopes for the best.

Our dear friends arrive. It had been far too long. The food arrives. The littles all eat. Happiness and filled bellies are table side.

And then….

Avery reaches, Avery screams, Avery cries— tears, big weeping tears. The unexplainable burst of uncontrollable hysterics enters our day.

I leave, her by my side.

I apologize. Profusely.

I attempt to control an uncontrollable outburst. I attempt to rationalize with the irrational. It is a hostage situation negotiation— one that cannot be won.

As suddenly as the outburst came, Avery wipes her tears, repositions herself in her wheelchair and takes an upright seat. She is ready to go back inside the restaurant. Breathe out.

We go.

But the moment of recovery is over in a flash. The hysterics. Like a new mother trying to calm a newborn, my friend and I ask questions Avery cannot answer. We attempt to soothe, to negotiate, to sort out what may or may not be upsetting her.

What does she want?

What does she need?

This?

Or is it that?

Suddenly our brunch at the creperie turns into a trial and error of attempts to give Avery whatever it is that she wants.

But….

It isn’t deliverable. She wants nothing we can provide. She wants to walk. She wants to talk. She wants to be a part of everything in this world instead of sitting on the sidelines.

And no one is condemning her to the sidelines.

We involve her in everything. She is often the center of the universe but the honest truth is that she knows she is and will always be sidelining life by comparison of her siblings and others.

My heart breaks for her, but my spirit as her mother (and my patience and my will) break along with it.

We leave.

Again.

It is the song and dance we so often play. We are both sidelined— often marooned together on our own island of special needs child and special needs parent.

We sit.

Outside.

Alone.

She begrudgingly looks at me as the source of all of her unhappiness and disenfranchisement.

With scorn on her face, she bends over in her wheelchair to reach rocks from a potted plant. One-by-one, the little rocks are thrown at my face, my body, my feet while she wears a look of disgust on her face for me.

I cry. I’m overwhelmed. I am done. Less than ten minutes spent inside with our friends, we are sitting outside. So many apologies, so many moments of being pulled from the background and into an uncomfortable and unpleasant foreground in public (and with friends who deserve better company).

In desperation, I text a really close friend— someone whom I know gets it, understands, and is there with love. She is a professional. I ask for a “tip” to help with Avery. In my heart, I want a magical solution of something like “snap your fingers and twirl around three times” and Avery will be happy, polite, content, pleasant. In my mind, I know nothing like that exists.

I still text.

Just in case.

We go back in to gather our belongings, Zev, Audry and our friends. Our friends are so understanding, but as understanding and wonderful as they may be— this wasn’t the brunch I envisioned. This isn’t the friend I want to be.

Taking a walk calms Avery so we walk. The clock has run out completely now. It is time to retreat— retreat with a sense of failure for the day, but a persistence to remind ourselves of the little blessings from the day (good friendships, customer service, kindness from strangers).

As we load back into the car and get situated to leave the parking garage, I begin to cry (again).

I can’t help it.

I try.

I repress.

Audry reaches over the console and grabs my hand with a soft, “I love you.”

And as Audry finishes her “I love you” we both hear a garbled but very ‘Avery-clear’ “I love you” from the backseat.

“I love you too, kid. So much so”

I cry some more.

Avery continues to say, “I love you” three or four more times. Succinctly her very first time to ever utter those words to me or to anyone else in her lifetime.

Perfect timing as usual— for Avery to have a moment of clarity, expression and un-sidelining into the world for a moment. Perfect timing from the universe or God.

It was needed.

It was everything.

As a special needs mother, I am often trailing behind the world, behind other mothers, behind myself. My days are about survival— not drowning in the sea of tidal waves of unpredictability.

I am insular in my friendships and with my family for all of the above reasons and more. Our family has its own mountains to climb, and I’m grateful for those people we know helping along the way. We are not an acquaintance or casual friend type family—- is any special needs family? If we extend an invitation, it is of the most respect for you that we do so. If we are not your cup of tea— by all means, *we* get it. We aren’t generally sure if we want to lunch with ourselves. ;) But know, if we aren’t your cup of tea please allow us to insulate ourselves with our small knit group of friends as no insult to anyone, but our need to have a safe place and our lack of ability and desire to acquaintance and social network. Part of our lives, even on social media, is for friendships and family. It is a special needs thing. We walk in different shoes.

A Day with Avery.... waves of emotion, unexpected blessings, good friendship, tears of frustration and tears of joy...... and today, a very special, very unexpected and very first "I love you".

What is Marriage...

This week is my 15th wedding anniversary. Over 15 years, we’ve managed to live a lifetime of experiences with three children, six pregnancies, personal defeats, challenges and moments of deep joy.

Dreamy-eyed and full of ignorance, ambition, youth, idealism and a head filled with fairytales, I walked down the aisle of the Episcopal church of my childhood towards the man of my dreams on June 30th, 2001.

Late, of course, the harpist was on the second play of the procession. No doubts, no run-away-bride; I was just late to my own ceremony. It was a small hiccup that fifteen years later humorously embodies our life together— many hiccups, small bumps, deep canyons of hiccups that we bounce back from as if we are forever indomitable and immune to taking situations beyond their true seriousness.

We were so young, too young, and had mountains of adversity to climb before our first wedding anniversary as we became a unit outside of our parents’ home and adverse beliefs and opinions.

What we had from the beginning was passion, an unwavering, relentless love and a remarkable level of compatibility— so much so that our priest, Father Kevin, advised during our pre-marital counseling sessions that our personality tests were the identical female/male version of each other, and that we should caution ourselves not to shut out the rest of the world as we grew older.

Passion, love, compatibility, communication (and enough affliction to bond, teach and gift you) is the recipe for a great relationship.

Passion is obvious. You have it the moment you meet, or you don’t. You don’t marry your best friend, but rather your lover becomes your best friend. Over time with shared experiences and a shared life together, the friendship is natural and beyond reproach— but the passion can’t be learned, replicated or called upon. It is simple chemistry. And those pheromones will get you a long way.

Love is absolutely necessary and a foundation for everything that lies beyond the passion. It deepens but not with years, not with the act of becoming parents— love deepens and widens exceeding measure from shared experiences of triumphs, loss and adversity. Years together only increases the odds that one can share in a bond unlike no other, a bond beyond a marriage certificate, beyond words. It can happen in year one, or in year 50, but as the moments add so the love multiplies— so much so that you know this person/this soul will be a part of you after your time on Earth has come to an end.

With love and memories like that, with a bond so deep, and a connection so intense and unspoken, you know that regardless of what happens in this lifetime; you have truly loved so impenetrably no physical separation, no divorce, no death would ever change it— and no one, simply no one, could ever replace it.

“Opposites attract” but compatibility stands the test of life. On my darkest days and in my darkest moments, I knew deep within that I had a companion in my husband. Whatever response I was feeling and experiencing from our tragedy, I knew he was too— in the same way, with a similar reaction. I didn’t just need that for myself and my own recovery, but “we” needed it for our marriage. We needed to be able to walk hand-in-hand from the rubble of life and not spar over differences or retreat from one another. In our situation, with a special needs child alone, the divorce rate is astronomical and it is in part because not everyone handles situations and challenges similarly. However, when you do, you become a team— a indomitable partnership in it together.

Communication…..groan…..

We had undeniable passion, love and compatibility, but zero communication skills for the first six years of marriage. It is a learned ability that took us time, patience, understanding and the skill of listening. It took us becoming vulnerable with each other. It took soul searching to find ourselves first, so that we could communicate with one another on what we wanted and needed.

So after fifteen years, what is marriage to me? What do I want marriage to mean to our children?

Work, commitment, re-commitment, love, passion, communication, friendship, forgiveness, vulnerability, togetherness, shared experiences and humor—- lots of humor.

As my husband nestles himself next to me on the bed to ask how my “re-write” is going and if I’ve decided “what wheels of the bus I’m throwing him under… the back two, the front two or is it a special bus with lots of wheels?”, we laugh, we connect, we forgive. We, in these moments (the small, the large, the nothing, the all-consuming) are forgiving, loving, committing, recommitting, showing our vulnerabilities, communicating, sharing…

After fifteen years of marriage and over sixteen years together, each day is a series of opportunities to connect and the decision to “check-in” with one another.

When tempers flare, like today when assitis crept in over frustrations with a broken air conditioner and an overrun working air conditioner, it is a reminder of the dedication it takes— each day to consciously decide to embrace each other in the little storms as practice runs for the big ones and to not take the hiccups more seriously than they warrant.

Perfect, we are not. And if my book has gifted anything to me it is that awareness, reminder and accountability. There is no ruse, no fictitious narrative of Instagram poses and Facebook status updates, no suburban white picket fence lie. I let the cat out of the bag and spoke with raw honesty, and continue to do so.

Marriage is flaws, mistakes, spoken truths, and openness— openness to someone else, to change, to acceptance, to forgiveness and openness to look within ourselves for our own accountability and our own shortfalls.

Marriage is seeing your life, your soul, your everything in the eyes of another.

Marriage is revealing the worst parts of you and having someone love you all the same.

Marriage, a true bond, is a life sharing commitment to another soul— a soul-mate— for your journey on Earth. We only get one of those. Make it work. Embrace the beauty, the raw exposure of one’s self and in return acceptance of another. Laugh at the little things, cry together over the big things and celebrate the most difficult afflictions in life for the immeasurable and impenetrable bond that will forever only be yours.

Happy 15th year of marriage to my partner, my husband, the man I honestly believe is my soul's mate for this lifetime. The last 16-plus years together have been remarkable, life-altering, and much more than my younger self could have ever imagined or known with any wisdom they needed to be.

Living Against the Odds and Outside of the Bubble

I can still hear her voice on the other end of the phone. Calm, professional, empathetic as she relayed the most life changing news a soon-to-be-parent can receive. I was only twenty-something, much like the twenty-somethings I try to avoid today. Spoiled, confident, blissfully ignorant and very much inside the bubble, I stood pregnant with a second child. We, even with the affair—or even more because of the affair—lived very much in the bubble of suburban life. Our path was still undecided yet with only variables that would keep us in suburban societal norm until…

With a ring of a cell phone and a trembling hand, I picked up the phone to receive a call from our genetic counselor that would forever change our lives— catapulting our existence beyond any life in the “norm” and into one against all odds.

Whatever and whomever existed before that call dissipated into the airwaves with every word, every explanation, of a new future.

Grief consumed and embroiled with the realization that our lives had taken a hard turn off course, we stood together as confusion, heartache and doubt consumed us before night’s end.

The genetic counselor in all of her guidance and professionalism counseled us to genuinely and carefully consider our options. Termination was discussed at length as our daughter had a condition “incompatible with life” and if (a rather large “if”) she managed to survive birth, her diagnosis would leave her in such a state that our parental role would become that of full-time round-the-clock caregivers.

In a state of shock I could only see and feel that it wasn’t our daughter’s time to go. I had to hold on. I needed her, and she needed me. She would decide her fate, and I would protect that right.

Beyond birth, beyond initial survival, are details and moments I couldn’t fathom nor was capable of handling emotionally or intellectually.

It is only today, as the tidal wave is in my sights, that I can begin to understand what our counselor had prophesied. Much like scurrying rats before a flood, I often feel, as I scramble to plan for the future that is impending.

Here is where I feel grateful for the awareness in life and in marriage to “know” what we need.

2016 has undeniably been the year of “mission independence” for our family. We are prepping for tomorrow by beginning to make changes for today.

Preparing for an endurance race rather than a sprint, we reside knowing not all of our children will be grown and gone after college. Our parental responsibilities will only become more challenging as we age, as although our daughter will grow into a body that resembles an adult, her mind, capabilities and temperament will be that of a toddler’s.

Undeniably, it was the “risk”, the potential, of this life scenario that our genetic counselor attempted to convey on that fateful evening over nine years ago. We weren’t signing up for “typical”. We weren’t committing to a life inside the bubble. We were giving our complete lives over to our daughter so that the life she was destined to live could be carried out— if that meant a life of a few days or a life into her thirties.

“Mission independence 2016” has been the fire and commitment to ourselves and to each other that we’ve needed once again. We may be special needs parents but we need to live life in conjunction with our role and not orbiting it.

Learning to take time for ourselves now so that when we are in retirement we can do so also has been a painful, but much needed, realization to our situation.

Taking moments together as a couple (and even a trip alone as a couple) is easier said than done, but we are beginning to prepare. The more independent our daughter is able to become around the house, the easier it becomes to have someone else care for her for a short while. Mission Independence 2016 is about enabling her with the tools for independence that will in return gift us a little independence.

Babysitters have been hired for the first time in five years. Date nights are happening without the assistance of family visiting from hours away. A new car was purchased (much to my dismay at first) that allows our daughter to transfer from the wheelchair and into her seat with independence, and we are pushing the limits on family vacations once again.

Much of change is scary, with a mix of exhilaration. Mission Independence is just another chapter in our book of life— not life as special needs parents, but life living against the odds and outside of the norm. We’ve walked many roads in the last nine years, learned a great deal of painful lessons, and experienced exponential growth as individuals, as a family and as a couple.

Hopefully, we can continue to adjust as painful as those adjustments tend to be for our stubborn selves and continue to “know” what we need for and from ourselves and each other. During Mission Independence, I’ve reflected on the last nine years and envision our future realizing the growing need to surround ourselves with the “right” support system. As insular as we are by nature, we have become even more so as special needs parents. It has never been more important to surround ourselves with true warriors, depth, character, genuine hearts, real friendship and good times than it is now (and will be as the years press on). I’m grateful for you. I’m grateful for our life against the odds and for Mission Independence 2016.

Some photos of our recent breakout family vacation for Mission Independence 2016-the Wheelchair has no bounds!

Alive and With Us

“Elation and gratitude. I felt nothing less. We had a disabled child, but I was grateful for her in any form, as long as she was alive and with us. ”  Love For Our Afflictions

“Alive and with us.” I still feel this way today, and although it might seem as if my standards are set low, they are anything but. I believe in my heart that Avery has only begun to achieve what she will in her lifetime, but my gratitude still begins and ends at “alive and with us.”

On the eve of another bi-annual ARD meeting, I know that I have to rejoice in the beaten odds of survival and success while maintaining in my heart the authentic gratitude that she is “alive and with us.”

Tomorrow I will hear elaborate detail on what Avery isn’t achieving and what she cannot do, and while it won’t be easy she is “alive and with us.”

No, my chid isn’t on track— not even remotely.

No, she can’t walk. She cannot talk. Or read. Or do any of the other hundred tasks expected from a “typical” third grade student. Tomorrow, in fact, speech will tell me the significant trouble and failure with activating just four communication buttons with any success or understanding.

Believe me, I understand everything she cannot do and hasn’t achieved more than any professional, therapist or teacher sitting at that table. We will be living with those “failures” for the next two decades if she is “alive and with us.”

Tomorrow, I have to remember everything Avery has achieved and although it is taken for granted by almost everyone, I will say it loud and clear here….

She has survived.

Survival is her challenge. It isn’t reading, writing, speaking, walking. Her challenge is basic, so basic that no one considers it “a success” in life.

From the moment we were told of her diagnosis, I only wanted her to survive. I couldn’t let go. I wouldn’t let go. I refused termination vehemently. I believed, as I continue to believe, that she will decide her fate.

Some of us aren’t here on this Earth to be like everyone else. Avery’s isn’t, nor ever could be, like everyone else. Her spirit isn’t the same.

I know these lessons are important, vital even, to her ever learning a skill that would give her a role in society. But as she ages, as I age, and as I contemplate the bigger picture—- I wonder, is that her role?

Is Avery’s role ever to possibly, best case scenario, learn the alphabet enough to sort something? She will never marry or have children. She will never work, even as a cashier as I once dreamt her doing when I would see adults with cognitive delays working retail.

She will likely be in diapers for life. I won’t be volunteering for her special Olympics team. She isn’t on the cusp of a normal range of development and inclusion.

Avery and inclusion? There is a dichotomy by definition. Avery is Avery. Avery is a different being altogether. She isn’t concerned over daily tasks (obviously by her unwillingness to work). Her soul and her awareness is so much greater than any one of us can imagine.  

When we say that Avery holds the secrets of life, but cannot communicate them perhaps there is a kernel of truth in the joke.

While, I will continue to support Avery’s education and any attempt made to create a better future for her I am beginning to wonder if I am applying earthly expectations on a soul that is obviously here for so much more than sorting and being pushed into the shadows of society.

Children and adults like Avery are so much more than “typical”. She is curmudgeonly. She is an old woman (or man) trapped in an eight-year-old disabled body. She laughs on point with every adult joke, right on cue. She knows things and does things that she shouldn’t know, that no one has taught her. She couldn’t be a “typical” child if she was a typical child.

I don’t know why Avery is here, but I know with certainty it isn’t for inclusion. I know with certainty that her soul is much more aware and in touch with something greater than we can fathom. She isn’t on the cusp of “normal” but she most definitely is living on the cusp with the before and after that we can only postulate it’s existence.

I know this because I am not raising a “typical child”. Most days, I’m not even certain I’m raising a child at all, but rather a cranky angel on earth that has lived more years than I can count.

So, no, she hasn’t achieved the list of milestones that I will likely sign and attest to at the conclusion of tomorrow’s meeting, but she is

“alive and with us.”

And possibly here to teach us lessons beyond comprehension.

Warriors cry.... and pray

There is going to be an ugly cry today. Not sure when, not sure what will precipitate it, but it will happen. I want a drink and it’s 9am. I don’t say that cavalierly. I say that as in I am fighting every desire in my body to pour myself a gin and tonic right now. I can taste it. I can feel it.

I was all too reminded of this crutch this morning when I looked back on my Facebook “on this day” to 5 years ago when I posted about yet another party, another night by the pool and another round of gin and tonics.

I was escaping the bad memories, the gaping hole that I felt in my being from our loss and from feeling indifferent that I had survived my blood bath. I had so many friends, and so many nights of not thinking, not feeling, not living.

Thankfully and perhaps by the grace of God, it was short lived. I rebounded, because warriors do. I picked myself up, stripped my bad habits, put myself in check and made a promise to be so much better— to be grateful for surviving and to embrace other warriors.

Today I am strong, but not as strong as I want to be. I woke at 4:30 this morning to go and run with the best running partners and friends I could have dreamed up, but after running my half marathon less than a week ago and resuming strenuous workouts at the gym it was the worst run I’ve had in over a year.

It isn’t this one run— or not “just” this run. Something is in the air and beneath the surface. My chest is heavy, I can feel the tears readying themselves, and if I had to equate it to anything I would say I’m experiencing mild anxiety.

No rhythm or reason. I can dig around my soul endlessly but truthfully there isn’t anything that warrants such emotions or feeling of impending doom.

Over the years, I’ve learned that bad days are still going to happen in spite of our dedication to being optimistic. I have made new habits of running and exercising the bad away. I will go out of my way to help someone else or to surprise someone with a little gift/treat to turn around the day and to pay goodness forward.

I’ve found my fellow warriors and have become more and more selective in whom I befriend, let in and spend time with— less is more, genuine is everything.

What is left nagging and reoccurring (possibly to my annoyance but perhaps out of deep meaning), is a reluctant realization that prayer is lacking in my life again.

I’ve had a bad week, for no particular reason. I feel my life is out of control, but realistically it is the most control it can be under the illusion we actually control anything.

I have given myself, my time, my money in helping others this week, and while yes, those good deeds turn around the day—- I can’t ignore the continuing theme.

Yesterday, while my youngest took a rare two-hour nap I curled up with a prayer book. If our house was ever dusty, I would have had to dust it off as it had been untouched for several months. I read, but truthfully didn’t pray— intentional from the book or from the heart.

I thought about my dark entryway and weeping prayers I wrote about in my book—- and then silently chastised myself for not continuing and for not being able to pray with such ease, comfort and authenticity when my life isn’t crumbling.
Then, I decided to write about it declaring my pledge to pray. Twenty-minutes later, I closed my laptop with a blank screen.

Today, with the returning anxiety and feelings off-centeredness I am taking the big hint that even with everything in my life— running, supportive friends, family, a loving soul mate and the ability to not drink a gin and tonic when I want it most— I still need to unlock that box so deeply hidden inside that makes me wiggle in my chair at the mere mention.

Taking a deeper plunge into one’s self and vulnerability to develop a relationship with something beyond ourselves is…. all encompassing, there are no words.
Because warriors cry and I believe they also must pray. . .and in doing so, they conquer.

Warriors cry..... and pray

There is going to be an ugly cry today. Not sure when, not sure what will precipitate it, but it will happen. I want a drink and it’s 9am. I don’t say that cavalierly. I say that as in I am fighting every desire in my body to pour myself a gin and tonic right now. I can taste it. I can feel it.

I was all too reminded of this crutch this morning when I looked back on my Facebook “on this day” to 5 years ago when I posted about yet another party, another night by the pool and another round of gin and tonics.

I was escaping the bad memories, the gaping hole that I felt in my being from our loss and from feeling indifferent that I had survived my blood bath. I had so many friends, and so many nights of not thinking, not feeling, not living.

Thankfully and perhaps by the grace of God, it was short lived. I rebounded, because warriors do. I picked myself up, stripped my bad habits, put myself in check and made a promise to be so much better— to be grateful for surviving and to embrace other warriors.

Today I am strong, but not as strong as I want to be. I woke at 4:30 this morning to go and run with the best running partners and friends I could have dreamed up, but after running my half marathon less than a week ago and resuming strenuous workouts at the gym, it was the worst run I’ve had in over a year.

It isn’t this one run— or not “just” this run. Something is in the air and beneath the surface. My chest is heavy, I can feel the tears readying themselves, and if I had to equate it to anything I would say I’m experiencing mild anxiety.

No rhythm or reason. I can dig around my soul endlessly but truthfully there isn’t anything that warrants such emotions or feeling of impending doom.

Over the years, I’ve learned that bad days are still going to happen in spite of our dedication to being optimistic. I have made new habits of running and exercising the bad away. I will go out of my way to help someone else or to surprise someone with a little gift/treat to turn around the day and to pay goodness forward.

I’ve found my fellow warriors and have become more and more selective in whom I befriend, whom I let in and whom I spend time with— less is more, genuine is everything.

What is left nagging and reoccurring (possibly to my annoyance but perhaps out of deep meaning), is a reluctant realization that prayer is lacking in my life again.

I’ve had a bad week, for no particular reason. I feel my life is out of control, but realistically it is in the most control it can be under the illusion we actually control anything.

I have given myself, my time, my money in helping others this week, and while yes, those good deeds turn around the day—- I can’t ignore the continuing theme.

Yesterday, while my youngest took a rare two-hour nap I curled up with a prayer book. If our house was ever dusty, I would have had to dust it off as it had been untouched for several months. I read, but truthfully didn’t pray— intentional from the book or from the heart.

I thought about my dark entryway and weeping prayers I wrote about in my book—- and then silently chastised myself for not continuing and for not being able to pray with such ease, comfort and authenticity when my life isn’t crumbling.

Then, I decided to write about it declaring my pledge to pray. Twenty-minutes later, I closed my laptop with a blank screen.

Today, with the returning anxiety and feelings of off-centeredness I am taking the big hint that even with everything in my life— running, supportive friends, family, a loving soul mate and the ability to not drink a gin and tonic when I want it most— I still need to unlock that box so deeply hidden inside that makes me wiggle in my chair at the mere mention.

Taking a deeper plunge into one’s self and vulnerability to develop a relationship with something beyond ourselves is…. all encompassing, there are no words.

Because warriors cry and I believe they also must pray. . . and in doing so, they conquer.

“All you need is a little faith, trust, and pixie dust.”

The greatest gift is the unexpected one that is about someone else— a bond, an inspiration, an outlet for a story that needs to be told.

Tonight, I sit in bed curled under my blanket attempting to unravel the mysteries and blessings of the universe and our connections with each other. While it’s too grand of a task to actually achieve, I can rejoice in the happenstance that is anything but.

Mother’s Day weekend was spent in California running 13.1 magical and slightly painful miles in Disneyland for the 5th Annual Tinkerbell Half Marathon weekend. While, my blog is expected to be about the race, the miles, the sights, the triumphs, the medals—- instead, I write about unexpected connections and inspirations.

In writing my book— or perhaps really, in putting myself out there with raw honesty, insecurity and venerability— people I meet share their own truths of past and current lives, as revealing and vulnerable as they may be.

It often comes from a place of gratitude for the inspiration that I may have given to them, but what I have failed to reveal is the endless inspiration that I receive from them.

It feels as if the universe is open far and wide right now for connections and inspirations— symbiotic in nature and in a loop of equal amounts of give and take. At every turn over the last ten days, I have accidentally sparked a bit of inspiration, openness, or revelations with people near and far—strangers, friends, acquaintances—but what I want to say is it is YOU who is the inspiration! It is YOUR story that moves me. It is YOUR honesty, YOUR strength, YOUR resilience. YOU are the hero of the story. YOU are the one that I am grateful to have met.

We are all in this together, and as much as you might feel my story has inspired you, you have given me a gift in return tenfold.

Something is in the air, and I want to bottle it up for a rainy day. Together we are strong. We, our stories, are connected. Positivity, perseverance feeds off other optimism and strength. Putting myself, my story, out there and in return receiving yours puts us in that incredible loop together. It is a reminder on our darker days or a reminder for when we slip. It is a reminder of what we have survived and what we can survive.

So because we are all connected and I’m rejoicing in the happenstance that isn’t, I’m going to share Tinkerbell Half Marathon photos. I was originally inspired by bloggers writing about RunDisney and the Tink Half, The DisneyWorld Marathon Weekend and more. I decided to become a runner, in part, because of those inspirations and goals. As I reach back to those connections and inspirations, I extend a hand to others to feel, inspire and connect with this post and to go on to share their stories.

It’s a big open universe out there with so many incredible people living and surviving their own darkest days. We have warriors among us, and I hope we continue to inspire each other.

Thank you to everyone I’ve met or have gotten to know more intimately, in particular over the last ten days. Thank you for the messages. Thank you for the constant inspirations to be better, to survive, to learn, to grow, to continue to share and to really let your stories resonate— trust me, they do. You are amazing, and if for some reason no one has reminded you of that today, then I hope this post will.