“There is always one unexpected moment in life when a door opens up to let the future in.” ~ Graham Green

In many ways this happens to me every single day.  Some days it is a welcome breeze blowing through to clear out the cobwebs, and some days it is more like a typhoon compressed into just a single fleeting thought. A thought that then sits heavy on my heart and waits for the visions of what might be to subside.  But those times are fewer than the other times, most times.  The times that  the feeling is similar to that of fresh crisp air that nips into your lungs on a fall day. The feeling of rolling the window down as you drive on a backroad after being inside too long on a cool spring day while the sun shines in and your favorite song rises through the speakers.

The moments that drive these realizations are just that moments; yet somehow they are so packed with emotion I can feel them for days, months and even a year later.  It’s moments like E really walking, really showing that she will walk at some point on December 19, 2013 that move me even now beyond any boundaries I may have thought existed for the purest of joys.

This is when I see what’s truly possible. What the human spirit can do.  How sometimes the moments you would never let yourself imagine can happen right before your eyes.  How even though you have logged countless hours and watched the smallest moments as huge milestones, you find yourself in awe as you watch it all come together.  You peek through the door.  You see the future. Not the fearful future that is scary with the unknown, but the open hopeful future paved with possibility.  How whatever “can’ts” you have heard become “maybes” and “cans.” It is the most beautiful of recognitions and it can happen every day.

The smallest of things can bring the same awakening.  When Q yells at me from the doorway, “Mommy! Kiss and Hug!” even though we have already hugged goodbye twice. When baby M turns her head at the sound of my voice entering a room and gives me a huge smile as she wriggles to try to get to me.  Little tiny moments in each day.  If I didn’t know better I might let them pass, not giving them a second thought, but E has changed all of that. She has broadened my view, my perspective and my world. She has taught me that the seemingly smallest things can change everything and can be just the moment that opens the door to not only to let the future in but to remind me that each day can and should be ‘mynewfavoriteday.’

Cover image shared from http://www.barimed.com/universityofmiami

The value of identity of course is that so often with it comes purpose. ~Richard Grant

This particular post is one I have been wanting to write for ages, but perhaps acknowledging my own insecurities and inadequacies here in writing was even a bit much for me. Yet, I know I am not alone, so I will write this and expose myself to potential criticism, but at least I can honestly see the ridiculousness in all of its purity and subsequently acknowledge the purpose of what I am about to share with you.

Here she is…Foxy in all of her glory…

I BOUGHT A MINI VAN. Yes it’s true. A silver, 2012 Town and Country. The doors open automatically, it starts from my key FOB and the seats completely collapse into the floor. BUT, YES, I, SHANNON PRUITT, officially own a minivan.

 I am pausing for those that know me to allow for their squeals of laughter to subside….any family member or friend that I have said these words to in the last 4 months has had this exact reaction.

Now, I realize some of you may be insulted by the identity crisis that avalanched upon me in the Chrysler dealership on that hot summer day, 37 weeks and 5 days pregnant at 39 years old, but please allow me to explain. The honest truth starts with the fact that I never thought I would buy a minivan. That I would find some other way to accomodate the unexpected baby M, and our 3 year old, soon to be four year old twins who would all be in car seats. I scoured car websites, and went over the interior images with the analysis of a forensics specialist discecting a crime scene. I zeroed in on every possible seat configuration. Yes, it was possible to get 3 car seats in the back of some of the cars, but with no cargo space and most car backseats needing to be collapsed to access the often “faux illusion of a 3rd row,” the image of Q having to try to crawl through the trunk everytime we went somewhere as a family either put me into fits of disbelieving laughter or horrendous guilt over my clear issues around what would likely be the invevitable…owning a mini van.

On that hot day in July, just 7 days before Baby M graced us with her amazing presence in this world, I sat with Q, E, KSP and my dad haggling over interest rates. At the same time, I tried to rationalize and understand why I was having so many emotions about what is clearly such a trivial and silly experience. Not too mention, I do know that we are so fortunate to be able to buy a minivan to accomodate our growing family, but I was in a different state, my own form of a mid-life identity crisis. It occured to me, it all came down to my “mom pie-chart.” Normally, this pie chart is happily filled with mom of 3 amazing minis, wife, family, friends, career, but suddenly all I could see was a silver town and country mini van, my recently acquired Costco membership and a pair of mom jeans barreling at me threatening to make their way onto my person. Perhaps part of it was that I didn’t have a lot of clarity of what was happening around my job, or as I call it, my hiding place. Not a hiding place from anything or anyone but a hiding place for my sanity. A place and something to focus my mind and channel my energy into that keeps the rest of me afloat. A place that I don’t get swallowed up by the unknown of the future.

For context, almost daily, I have a conversation about the future and the implications of everything we do today. A future for which I have no handbook. A future that involves supplemental trusts and trust executors and potential life long care for my now 4 year old daughter. And an unknown of what Q will be like when he grows up and will he, or now Baby M, ever want to or be capable of taking on that responsibility. How to protect her and keep her safe and make sure she is treated and loved just as KSP or I would if we would be with her forever.

So, with no clarity on my clients, a new baby due anyday and 2 minis who have their own distinct roles and needs within our family, I melted down in the shiny floored, new car smelling, overly air-conditioned car dealership. The minivan was a metaphor for fear of not having a way to compartmentalize. For fear of losing myself and subsequently being unable to do what I need to do to face the unknown each day. Now, that’s a lot of pressure to put on one car…pretty sure I won’t be pitched to do any Chrysler commercial creative anytime soon.

Driving home that day in my new mini van I felt the tectonic shift in the plates of my heart, the realization that we were about to have a baby, that our lives were going to again change. That the minivan was going to carry our new family of 5 into the future.

Precious Cargo

4 months later, with hormonal clarity (and in full disclosure a car for my daily running around), the silver minivan has a name and a place in our family. Her name, Foxy the legend, given to her by a good friend whose first response, like so many when they found out that I bought a minivan, “You bought a minivan!” Is derived from her silver sassy appearance and she is legendary for the way she was purchased and more than that, that she safely carries around our most precious angels. She enables us to go places with our loved ones that we could not do in another type of car. She is let’s Q be king of the car and watch over Baby M and gives us updates on her status. She lets little E see the world around her through big windows so she can happily babble away in the seat next to Baby M. She is a welcome part of my mom pie chart. She will be full of laughter and love and will motor us into the future unknown where no matter what we do we will do with the purpose of reminding ourselves why that day is ‘anewfavoriteday.’

“The mind determines what’s possible, the soul surpasses it.” ~ Pilar Coolinta

Today is a big day.

Today one year ago my soul was put to work beyond any measure I could have imagined. Until then, my mind had been doing most of the deciding what’s possible. What E, could handle, what could happen, how she would grow and evolve.  My mind told me that Q was an amazing gift and E’s forever partner in showing her what’s possible by not treating her different, by showing us that she is exactly as she should be. My mind told me that we were all set with minis and our family was complete and could not possibly handle more.

On October 1st, 2012, my mind went silent as I heard the words “it’s Angelman Syndrome.” I knew it was possible.  I had asked for the test.  But yet, all I could feel was, it’s not possible.

The world as I knew it would never be the same. It has never been completely the same….but that’s exactly the point.

I have written about that day more than once,  because I can still feel every emotion that went along with the words in that moment and the minutes and hours that followed. The extreme sadness, fear, despair, anger, grief, burdened not my mind but my soul.  It’s my soul that can still call these emotions up on demand.  I feel them in a cool trickle that seeps from the deepest part of me.  I cannot fight it.   I can see the movie as it plays out in my mind.  The last look on KC’s face as she closed her laptop. The strum ringtone of the phone. The genetic counslor’s  words as they ring in my ears and my own polite and measured response. The look of nervous anticipation on M and G’s face. M’s swift movements around the large conference to hug me.  The warmth of G and M’s hands, my very own angels, as we lay on a cushion tipsy on Whispering Angel trying to shut out the pain.

One year later, the only thing that I can feel even more deeply and that challenges the wave is the moment I look into the eyes of my dear sweet daughter E and I see her light.  Her light and love for life.  It is not her mind that knows these parts of her, it is her soul.  The power of this love comes not from my mind, but from my soul.  In her eyes I see that my mind cannot know what’s possible, only her soul can show me.

All around me lately are stories of sadness.  Miscarriages, difficult diagnoses, even death.  Situations I cannot imagine and yet even as my heart breaks for each of them, I have no words to comfort other than, I am here and sending love.  As I listen, I always hear some combination of the trickle in their voice as their minds grapple with the reality and the fear of what’s unknown and next.

Last Thursday night, KSP and I were on the host committee for an event benefitting Angelman Syndrome.  The money raised went to fund a fellowship in honor of one the deceased former researchers who dedicated himself to finding a cure for Angelman Syndrome. As part of the event one of the research recipients of the fellowship got up to speak about why she had dedicated herself to a rare syndrome.   She talked about the happy demeanor of the children and how they try so hard. She outlined some of the challenges that the parents face.   As she spoke, the trickle began to seep through me.  I realized I often forget the reality.  My mind sees what’s possible and what is.  As the tears streamed down my face in front of some of our dear friends who attended and strangers I did not know, E’s face and voice appeared in my mind.  Her bright smile. Her vocalizations. Her clear eyes full of comfort and love and I felt her  presence.  She was there reminding me how far she had come. How she had already surpassed what’s possible and had taken us all with her.

Today, is a new October 1st.  The pain of the day last year will never go away, but I want to see the day now from the happy part of my soul. From E’s eyes and through her soul.  It would be a lie to say it’s easy and that I do not still feel fear, grief, and sadness now and then, but more than that I feel love and I bask in her delight with herself and everything around her.  Her delight in what’s possible.

Through the eyes and soul of an angel.

It will be her soul that helps me surpass what my own mind thinks as possible.  It would seem that this is a feat that can only be accomplished by Angels, and an Angel she is…my sweet Angel E.

No matter what you are going through happy or painful.  No matter what your mind has determined is possible or not.  No matter what you assume or think should happen, listen to your soul.  It is a place within you where all things are possible for you and those you love. It may require looking at things a little differently. It may require abandoning expectations. It may require a whole new focus.  It may require looking at something through someones elses’ soul so that your own feelings become more clear.  It is here, in this place, the quiet place where you can find even the smallest sliver to make today ‘anewfavoriteday.’

I invite you all to reset with me today.  To take a pain, fear, sadness and find the one thing that can turn it and make it just a little bit better.  It all else fails, see today through this sweet Angel’s soul and you can find a space to make today ‘anewfavoriteday.’

Cover image shared from fibrohaven.com

“Where hope grows, miracles blossom.”~ Elna Rae –

As I sit here now nearly 39 weeks pregnant, yes, nearly 39 weeks…I am finally breathing again.  Figuratively and sometimes literally, I held my breath for 38 weeks.  And then last Wednesday, I hit 38 weeks. Until that day, each day leading up to this point has been a point of reflection on my first go around at having my precious E and Q, which we all know didn’t go so well.  Each week became a mile marker of what I knew the development of a baby to be outside the womb.  Each week a battle to not let Baby M be a preemie.  To grow her safely inside me beyond even the 37 week premature  marker so that her whole being could develop inside of me. Each week and routine decision loaded with a sense of responsibility and a hum of anxiety.

Now,  at 38 weeks and 4 days pregnant, my sweet baby M has fully functioning lungs and heart and brain. She has the ability to simultaneously suck, breathe and swallow. She can regulate her own body temperature, oh, and did I mention, she is a BIG girl.  Nearing 8 lbs and continuing to grow.  She will look like a baby. A baby who is ready to enter the world, and hopefully, if all goes well, a baby who will ride down the hospital elevator in a small old fashioned navy blue carriage with me in a wheel chair by her side to the parking garage. KSP will pull the car around and we will put her in her car seat to take her home with us. If everything goes smoothly and “normally,” she and I will have the moment that I walked past countless times each day for 4 months that I went to visit E and Q in the NICU the first time around. Countless moments of sadness and most often tears engulfing me as I longed to be those families, and those mothers.  Now, I may just get the chance.  A do over.

Our sweet baby M has given us all a do over.  A way to heal that we could not have embarked upon without her own fight, determination and decision to join us. Admittedly, it was a long road for me.  To see our family as one of 5 and not as 4, but today, at 38 weeks and 4 days, I am excited. Excited to meet her. Excited to welcome her. Excited to be uncomfortable in my body and “ready.”  Excited to push myself to go out for a walk so that I will hopefully motivate her to the next phase.  Excited (finally) to have perfect strangers make silly and kind comments about the very burgeoning belly.  Just excited.

Each moment starting 4 days ago has given my heart and spirit a much needed do over.  It has freed the deepest part of my soul to hope in a new way.  Hope,  in a way that brings light and fresh air with no presence of the familiar cobwebs of fear. Hope in a way that gives us a new path on this journey. At 38 weeks and 4 days pregnant, it’s hope in our new little girl that has reminded our whole family  that our miracles continue to blossom and that while we cannot always see the path ahead,  love and hope have taught and will continue to teach us all that each day can truly be ‘anewfavoriteday.’

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“Love is not blind. Love sees what is most true.” ~ Vanna Bonta

As I sit here 26 weeks pregnant today and approach each day with caution,  I can feel my love for our new baby girl grow exponentially.  I wait anxiously for the smallest movements, rolls, kicks and pokes. I count each day and each week backwards from when I delivered Q and E at 28 weeks, just 2 short weeks from now.  Even as I type these words, I can feel the breath catching in my lungs waiting hopefully for my mouth to open and exhale…the physical manifestation of my entire being begging for the unavailable confirmation that everything will be different this time. Yet, even in this expected ambiguity, with each roll, kick and poke, I find comfort and confirmation that everything is as it should be right now.  Although we cannot see her, all of us have our own connection with the sweet girl, we will name Mia.

While the  love from KSP and me is obvious as her parents, the love between siblings can be harder to distinguish; however, with a discerning eye and some intuition, it is all clear as if peering through a window to the soul.

Each day, little Q touches my belly and says, “that’s baby Mia?”  I always respond with “yes, bug, do you want to say hi to her, she can hear you.”

Q says hello to baby Mia a month ago…

He always replies yes, and tentatively puts his face right up against my belly and with muffled words, says “hi, baby Mia.” I can’t help but smile from the inside out as a warmth radiates throughout my body each time.

With E it’s a different approach, and in some way, it’s more as if little Mia is the one taking the initiative; as if she knows….

The reason we chose the name Mia was not simply because we liked the name.  We chose Mia because we truly believe it is a word that, no matter how limited E’s vocabulary, she will be able to say some version of her sister’s name.  That, with her new ability to say “mmmm” and “ba ba ba ba” she will at some point near or far into the future, she will be able to say some word that sounds like  “Mia” that she will associate with her sister.

Perhaps it is this knowledge that Mia already knows in her heart. That while she is the baby girl, she will someday be the big girl.  So each night as I hold E to give her her bottle before bed on my ever-expanding belly, little Mia starts to kick her sister.  To say hello.  To these little nudges, E’s eyes light up and she gives me a smile to say, I know too Mama.

In those moments, suddenly all the anxiety about if everything will be ok, about being afraid of the past, about how we will manage the future, flies out the window, for as it has always been, it will be the love that guides us in how it will all work.  We are not blind.   I am not blind, for I see what is most true…love all around in everyday words, looks, moments, and gestures.  I hope you can all find this love somewhere today with a child, spouse, sibling, friend, pet, or whatever or whoever brings you joy, and let that love make today ‘anewfavoriteday.’