October 18, 2013

7 Comments

The Wondertwins turn 4!

“When the most important things in our life happen we quite often do not know , at the moment, what is going on.” C.S. Lewis

Four years ago this morning truer words could not have been spoken. I had really no idea what was going on other than my babies had just arrived and it was all surreal.  This morning, I remember it like it is that morning, 7:10 am and Q arrived, 2 lbs 15 oz, not breathing, not crying, just silence.  Then E, all  2 lbs 8 oz of her, at 7:12 am, only whispers.  Flashes of blue scrubs from the corner of my weary eyes, and a quick picture with each next to my tear streaked and exhaust

E and Q meet for the first time at 5 weeks old...

E and Q reunite for the first time at 5 weeks old…

ed face and they were gone.  It was the one of the two best days of my life and it was by far away the most important day of my life and yet I had no idea at the time.

Today, is Q and Es’ 4th Birthday.  Yes, the appropriately named Wondertwins are 4. I keep saying it because I can hardly believe it myself.

Since that day 4 years ago, time has flown yet the moments with both Q and E stand still like pictures and movies in mind.  Their smiles and giggles tickle my ears and warm my heart.  I can feel their joy and pain.  Their fear and their fortitude.  I take moments to snuggle them and appreciate them every single day (even the rough ones:)).  I remember what they have shown me about strength, compassion, perseverance, empathy, joy, and love.   I know that they have made me a much better person in the journey of my own life.

Their arrival was the most important day in my life because it changed me forever.  It has challenged me beyond anything I could have imagined while giving me the greatest fulfillment in the smallest of moments.  Moments that would have likely been lost on me had everything not been the way that is has been.  Moments, I would have not known to appreciate.  Moments to wonder at all of our many blessings and moments to realize just how precious every moment our time is together.

I often think this blog is my love letter to my children.  The one that they will one day read and realize how much I am truly grateful for them. The love letter that even if they cannot read, when Q or M reads it to E, she will feel the love that radiates from the words that I write.  As we embark upon a new year of their life, we will watch as they grow and change and meet new milestones big and small, but we will grow and change with them. Their birthday marks a new year for a new appreciation for what’s to come and a reminder to continue to be grateful for all of those moments that we are so very very very fortunate to have.

Happy Birthday Q and E. You are my precious Angels and thank you for giving me this journey. While I may not have totally understood just how many ways today was important 4 years ago, I certainly do today.  Today is ‘mynewfavoriteday.’ I hope you will join me in wishing my little miracles happy birthday and take a moment to feel the joy and gratitude that fills my entire being and let it be a lens through which to view your own gifts.

Forever and ever...

Forever and ever…

“I’ll love you forever, I’ll like you for always, as long as I am living, my babies you’ll be.”

Happy Happy Birthday.

Love always,

Mama

Quote from the book, “I’ll Love You Forever” by Robert Munsch and Sheila McGraw

October 1, 2013

6 Comments

The soul surpasses what the mind thinks is possible.

“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.

IMG_7062

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

August 27, 2013

11 Comments

An unknown dream comes true…Baby M.

“Sometimes the dreams that come true are the dreams you never even knew you had.”
― Alice Sebold

5 weeks.

It’s been 5 weeks since I sat, enormously pregnant, on my oversized brown leather chair in our family room and typed my last post on Sunday night July 20th.

It was 5 weeks ago that night that I first truly acknowledged and said I was excited about the future. 5 weeks since I had made it to place where I was no longer fearful about what life would be like when baby M arrived and no longer fearful that putting my words out there would bring my worst fears of not making it to term.

5 weeks ago today, in a scheduled 3:36 am post,  I put my happiness and excitement out into the universe in writing and in my own words.

And, it was 5 weeks ago today at 3:30 am I had my first contraction, went into labor and Baby M arrived into the world, into our family, and into my heart and soul.

5 weeks ago today, my heart healed. As a reader, Heather, so aptly put it, Baby M was the tonic that seeped into the cracks of my heart I thought were beyond repair. Cracks that I thought were scars and would never heal, but now they are lighter. They are quiet. They are no longer so raw.

The past 10 months  have changed my life in a way I never knew I dreamed.  Laughter and tears, and laughter about my tears have been a constant.  I have struggled with my own emotions in a way that was completely foreign to me.  Joy, fear, guilt, anxiety, frustration, happiness….over and over again, wave after wave and in no particular order these feelings would rush through my body as if being carried like a drug through my bloodstream. I could feel them all over my pregnant body.

And then in a moment that will forever be marked on my memory, it all went a way and  I only felt peace. As I reached out my arms at exactly 7 pm on 7/22 and pulled my new baby girl onto my chest,  a true  peace settled over me. A peace I knew would now last.  A peace that would be my new baseline. Another moment to grab onto and forever seal with all the other moments of Q and E that have become the dreams I never knew I had.

A new beginning....

A new beginning….

BabyMia_1 month

Baby M…our precious Princess.

There are so many posts to follow this one, the funny things that happened, the other happiness and challenges that have come with our new life, but today is about my unknown dream, baby M.  Today is about our own little Princess, who, while the world watched Prince George come into the world on July 22 and I am sure was bringing his own sense of healing, our precious Baby M was joining us to heal this mama’s heart.  Setting a new course for each day to truly be ‘mynewfavoriteday.’

I am so proud and happy to introduce you all to precious Baby M.  and hope that some of my joy, my faith in everything happens for a reason, and my peace finds its way to you to make today ‘yournewfavoriteday.’

❤ Shannon

July 22, 2013

11 Comments

Do overs, hope and a new path.

“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.’

Cover Image shared from:

May 31, 2013

7 Comments

A spectrum of vulnerability.

“It is not our toughness that keeps us warm at night, but our tenderness which makes others want to keep us warm.” ~ Harold Lyon

I have never really been good at asking directly for help.  In many ways it always felt like I was somehow in turn admitting I was weak.  Even now, I struggle.  I am sure part of this stems from my need to be good at things. To feel like I have things under control. To feel like I could control the outcomes if I did x, y, or z. By nature,  I am positive. An optimist. I am a doer. I solve problems.  I don’t focus on what’s wrong as much as how to fix it.

Professionally, I have always been good at this problem-solving and having it together, personally, I have lived by the same rules. If I was having a hard time, I never wanted to stop to feel sorry for myself, believing that focusing on the solution was a much better use of my time.  Asking for help in my own book, and only as it applied to me, meant I was becoming a victim of my circumstances.  Until I realized that not being vulnerable and asking for help was in some ways its own form of weakness…to not admit that I can’t do it all with a smile and positive attitude.

The circumstances around having Q and E submerged me into this world of lack of control. E’s delays and the persistent unknowns reinforced that sometimes no matter what you do, there is no easy solution. A crystal clear path or outcome.  My solution was to own what I could do. How I, and we, could all rise up to meet the challenges.  Just when I thought things were “under some form of control” I found out I was pregnant.

This part of the journey more than the mile markers before it have taught me new levels of vulnerability.  Acknowledging my own limits, as well as other people putting limits on me.  Fear of  the past repeating itself driving me to ask for help. To admit I can’t do everything forcing me out of my comfort zone of my perceptions of control.

I am now 31 weeks pregnant and live each day with a combination of gratitude and relief.  My Dr.’s voice rings through my head daily to “behave.” To take it easy, to not overdue it. To get help  By his orders I asked for some much-needed help to keep E and Q’s rigorous schedule while protecting baby M still growing in my belly.   In many ways it felt like I was laying all my cards on the table in a high-stakes game of poker and in others it felt like I was shedding a giant boulder that I had been lugging around.

In my vulnerable state, gratefully my dad and Mother-in-Law were both able and willing to alternate weeks to come help me keep the frenzy of our lives going for the next month.  As my body grows more and more tired and uncoordinated, my mind is forced to admit even more that I am not able to do what I could do before and that I cannot compromise on any level the potential safety of Baby M and ultimately our family unit as we know it.  I now have to say no to things. To say I can’t.  To say I am not able.  To say I am too tired. All things that are not part of my make-up; yet, in some ways have given me new strength.  Permission to be ok to take care of myself.

I hope to remember this as a lesson going forward once Baby M arrives. To remember that vulnerability brings new warmth and strength of a different kind.  That vulnerability beyond my written word  shielded by a computer screen and through practice in my own life is a new milestone on this journey.  Opening new doors and new pathways of possibility for being going forward.  New ways to make each day ‘anewfavoriteday.’  I wish you all tenderness and vulnerability that will give you a new way  to see each day as ‘anewfavoriteday.’

April 25, 2013

12 Comments

Love sees what is most true.

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.”

PruittFamily_080

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.’

March 6, 2013

16 Comments

One More Mini to Love….it’s a new “newfavoriteday.”

“A new baby is the beginning of all things-wonder, hope, a dream of possibilities.” ~ Eda J. Le Shan

Yes, you are reading this right.  The Pruitt clan is expanding.  It’s been quiet around this blog, mostly as this quote isn’t entirely representative of where my mental state started when I found out I was expecting.  At 19 weeks, I am finally here, but to say this little one was unexpected, a surprise, not in the plan, would be an understatement.  As we all know, after trying to conceive for almost 2 years, I had to go through IVF to be granted the blessing of Q and E. Aside from all the obvious, “there are things you can do,” I am now 38, I couldn’t get pregnant the first time around, and I wasn’t expecting to be able to get pregnant now….But, guess what, I am now that story.

Now, I am sure some folks are thinking, how can she say this, gasp!  But, our experience of delivering and having minis hasn’t been exactly typical.  Additionally, we have had a baby in our sweet angel E for the past 3.5 years.  At a 10 month developmental age, I was terrified we would let her down. Somehow, not be able to continue to give her what she needs and will continue to need to progress.  To give her the very best opportunity possible to find her best quality of life.  On the flip side, I feared for little Q, who is thriving as he continues to learn and bring light and love into our lives: would we be able to continue to give him the unique place in our family as our bug?  How could we, and I, truly practically integrate an infant into our lives, between therapy, work, advocacy, school, and still give this new little miracle the kind of love and attention that it will deserve.

As so often it is, the view in the rearview mirror is much clearer, and as fate will often have it, we learn and grow from each experience, with each experience becoming the foundation for another.

At 13 weeks, as we waited for the results of my CVS with a full panel of genetic testing (a test done to identify any conditions or issues with the fetus), my anxiety levels crept to new heights with each passing day.  I was holding off on my attachment. I could feel it.  I had been down this road before. Expecting the call the first time around from E’s testing, contrary to what I believed they would say, rocked my world to its core.  I had thought when E had done her genetic testing it would come back negative. We would chalk her delays up to Cerebral Palsy (brain damage), not a lifelong, rare genetic condition, Angelman Syndrome.  As the fear grew that history may repeat itself, so did my realization that I was attached.  That I had turned a corner. That, while my fears of how we would do this and make this work hadn’t totally dissipated, I knew in my heart of hearts that like everything, we would figure out a way for this little one to become seamlessly part of our family.

When the phone rang at 3:30 in the afternoon exactly 14 days later, every fiber of my being froze in anticipation. My breathing shallowed and my heart clenched.  The genetic counselor with lightness in her voice said happily, “she is fine.”  A baby girl.  A she. A perfectly healthy, chromosomally normal baby miracle girl.  I could feel the shift like a tectonic plate in my heart.  It would be ok to now allow the sliver of light or hope to shine in.  To embrace the miracle that she could be for our entire family and for me personally to experience a hopefully more typical experience of having a baby.

And so I am.

Each day, I put my hands on my growing belly and welcome our new sweet girl. I tell her about her sister who will inspire her and us to do great things, and how much E will look up to her. I tell her how much she will learn from her brother who is whip smart and the gentle spirit of an angel and as if reinforcing my sentiments, Q will put his hand on my belly and tell me, “there is a baby sister” in your belly.

This post is also part of the journey.  To not be afraid to say it outloud.  To not be fearful that if I do, something bad will happen.  To let this part of the experience be happy and joyful. A friend early on said to me, as she tried to help me cope with the shock and fear I was feeling, “you have no idea how much love this baby will bring into your family.”  She is right, but with each passing day, little pieces of the wall begin to crumble and I begin to feel the enormity of the love that is awaiting us all.

So it begins,  a new chapter of “mynewfavoriteday.” As each day evolves and life changes, there will be good and tough days, but each day will hold in it the pure love, hope and wonder of possibilities that comes with not just a baby but with being able to see each moment, day and event as an opportunity of possibility.  Perhaps as we go through the hopefully next 4 months together before little baby girl arrives we can all remind one another of just one moment of each day where we can see this moment clearly and all be reminded each day has the hope of being ‘anewfavoriteday.’

February 11, 2013

4 Comments

Love…Infinity X Infinity.

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path.”
— Agatha Christie

If you are a “Revenge” fan like me, then you will have been excited about the return of a new episode last night. As it hasn’t yet aired as I type this, I am excited to see just what Emily has gotten herself into now. If you aren’t familiar with the show, Emily is avenging the unjust prosecution and subsequent killing of her father.  One of the things that carries through the entire series is the “infinity x infinity symbol” that was their sign between them as a Father and Daughter.  It was a gift he gave her that she could always take with her.

As Valentine’s Day approaches, I think about all the “Infinity x Infinity” loved ones in my life. KSP, my little Q and E, our family and friends.  In the past, when it was just me, or even in a relationship I was never a big Valentine’s Day person, mostly because I never had a lot of boyfriends, just guy friends.  But, I have always loved love.  Now that I am a mother, I love teaching my minis about love. About what it means to love. To show love. To give love. To receive love. So that they know that their parents love one another and will provide as best we can a stable foundation of love that they can draw from. So that they know how much they are loved. That “Infinity x Infinity” can only begin to scratch the surface of how much they are loved.  There is a pure beauty and simplicity in the concept of “Infinity  x Infinity.”  As a mother, I am also sometimes surprised by the power of my love for Q and E.  The strength it gives me to fight on their behalf, to speak up when I don’t think they are getting what they deserve when my voice might have failed me in the past, and the purest joy when I achieve something they need.  It is in these times that I truly no that this love defies anything that can be explained and transform a person into something they never knew or thought they could be.

So as I love love, and there is a holiday about love approaching this week, I will be embarking upon a little project with my minis. The plan is we will make cookies, and also cut out some hearts to make our own little version of cards for those we love.  While I can promise the cookies will probably turn out well, and the cards probably will not (I am not so crafty, but I try:)), there was also a special treat for me this week to remind me as an outward symbol of the infinite love I feel and receive. HElZBERG Diamonds reached out to me as they know about my guilty pleasure “Revenge” to ask me I would accept a pair of their new”Infinity X Infinity” collection diamond earrings, I had to say yes, who wouldn’t?  It was a perfect combination of 3 things, a symbol of  infinite love, beautiful earrings, and a lovely reminder that while we also love all those around us, sometimes it’s important to be reminded that we are loved, and that we love ourselves.

Infinity X Infinity Diamond Earrings in Sterling Silver

It was such fun treat for me, and I even got to wear them already!  So as you think about showing symbols of love on Valentine’s Day, whether to someone else, or even just yourself, be sure to check out the other beautiful options available from the collection and if you are a “Revenge” fan, it will be even that much more fun!  A big thanks to HELZBERG Diamonds for the special treat for me!

http://www.helzberg.com/category/collections/infinity+x+infinity.do

Whether or not you like Valentine’s Day, I hope this Thursday you will appreciate all those that you love and that love you.  Grand and small gestures alike can make someone feel special and when we help someone feel special, it can put all of us in a place to have “anewfavoriteday.” I know I will be appreciating all of you for the infinite love and support you have given me and our family in the past 2 years.

Shannon

Featured image from Tumblr.com

February 5, 2013

5 Comments

Red Light, Green Light and the joys of Yellow Light.

Slow down and enjoy life. It’s not only the scenery you miss by going to fast – you also miss the sense of where you are going and why.” ~ Eddie Cantor

“Red Light, STOP!”

“Green Light, run run run!”

Fits of giggles and laughter from little Q filled the air.  It was a simple day. We had a lot of work going on in house, which basically had our house looking like a scene from the movie “Outbreak” without the rabid monkey, so Q and I decided to stroll down to Starbucks.  It was a sunny day.   The bright sun warmed my shoulders like a light blanket, and we walked slowly.  On our way, Q stopped to point out and count street numbers, white fences, blades of grass, big trees, black cars, and flashing lights.  We weren’t in hurry, so we ambled.

On our way home, after more of the same 3 year old musings, he suddenly burst out with “Red Light!”  It caught me off guard, but as if channeling my owner inner child, I stopped in my tracks.  He instantly laughed and shouted “Green Light!,” to which I grabbed his hand and said in a silly voice, “run, run, run, run.”

“Red Light!” he shouted again and we stopped in our tracks.  In that moment, I decided to introduce ‘Yellow Light.’

I put on my best slow motion voice, and dramatically grabbed his hand and said “Slllllloooooowwwww, slooooooowwww, sllllooooooowwww,” while moving our bodies super slow over the sidewalk.  Quinn giggled and yelled “Green Light.”  Again we laughed and ran, and then it was time for “Red Light!”  I once again tried the “Yellow Light, Slllllloooooowwwww, slooooooowwww, sllllooooooowwww,” and while we still giggled, I could feel the urgency in both of us to get to the fun stuff, “Red Light, Green Light.”

But why did we need to rush? Why did it feel uncomfortable to slow down and not be running, or not be completely stopped?  When we were going slow, I could feel each movement and my mind raced with how much fun I was having just being with Q. Playing this very simple game in the sunshine with my little bug. I could feel the emotions of the moment.

It was then I realized how fast we live our lives. Of course I know this in my mind, but our day to day lives require speed and a pace to keep up with everything.  But in the ‘Yellow Light,’ I also caught myself and made a note to take a few minutes each day to find our ‘Yellow Light’ with each of the minis.  To not be so focused on what we need to do, getting out the door, therapies, schedules and to focus more on silliness, giggles, sweet moments of peace, and cuddles.

I do not want to miss where we are going and why. I want to remember always that no matter where we are going, we are together and we are going the same direction. That my minis will always know that they can stop me for a special moment and that in my ability to slow down, I will recognize it and enjoy it and make it special for them.

Since 2 weeks ago, I have done more singing, imaginary voices, silly jokes, and surprise tickles and no longer is ‘Yellow Light’ so unfamiliar and slightly uncomfortable. I hope you can all find a few minutes each day for a ‘Yellow Light.’  No matter what’s happening, and even if it’s the moment where you crawl in bed at night after a long day, let that moment be your ‘Yellow Light’ and make that day ‘anewfavoriteday.’ 

 

Featured image shared from:  1000solutions.org

January 10, 2013

3 Comments

A look back and forward at ‘Mynewfavoriteyear’ through Music (second annual)

The great thing in the world is not so much where we stand, as in what direction we are moving.” ~ Oliver Wendall Holmes

Happy New Year!  As you may have noticed, I took a bit of a break.  With the holidays, it seemed like a good time to take some down time and pay attention to all the little things around me. With the minis in less activities and therapies than usual and KSP off from work, we got to spend some time as a family and reconnecting.  But today it felt like it was time to brush off the keyboard and come back. The New Year always feels like fresh air blowing through my lungs. A chance to look to at old hurts with new eyes and aspirations with new opportunity.  Last year, I wrote a post that summed up our 2011 in music  (” A Look Back and Forward at ‘Mynewfavoriteyear’ through music”) and this year, I wanted to do the same.

This year has been packed with the highest highs and probably my personal lowest low. Through all of it music has been the soundtrack that pushed me to smile when I was a bit low, to cry when I desperately needed to breakdown and to laugh as I watched our little Q blow us away with his own passionate love of pop music.

This is where we started. Smiles all around. 2012 came with a host of changes in our lives. KSP took a new job, the minis were preparing to go to the UCLA Early Intervention Program, I started my own consulting company to have more flexibility and life was full of possibility.   Image

If I have learned anything in the past 4 years, is that life is most certainly not something we can control, but that each up and down is it’s own form of milestone. The future is full of the unknown and unexpected, but it it is also brings the promise of growth, of learning, or renewed opportunity. It’s all about:

“The Climb” by Miley Cyrus

As the year progressed, I thought a lot about what more I needed to do for E and Q so as to never regret not having done enough.  I was constantly carrying a burden of guilt like a boulder that had been attached to me so long, I barely noticed it anymore.  While quitting the corporate world and starting my own consulting company, helped, it still didn’t feel like enough.  Perhaps, it was the unknown of E’s condition.  While my puppy dogs and rainbows vision of everything being fine by the time she was 5 if we just did enough still served as my guiding light, unbeknownst to us, we were being guided down a new path.

Poppy shows Q and E a good time.

Poppy shows Q and E a good time.

In March, my dad, Poppy came to stay with us for a month.  The day in and day out support and the opportunity for him to spend time with Q and E in a new way, was great fun for us all.  While he was here, we took the first step in what will now be a life long journey for us.  Entering the UCLA Early Intervention program was a huge turning point for us.  Not only from a developmental aspect but also from a support aspect. Meeting and spending time with other parents with special minis gave me great comfort.  I felt “understood.”  It was here as well, that E and Q would flourish in their abilities.  With great pride I would watch 3 days week as Q’s empathy and attentiveness to E would grow and under his watchful eye and with the help of the teachers, E would break out of her shell and spread her wings.  It was also here, that I would embrace that my little Q also needed his time.  I realized there it was “Time to Begin” his journey as little Q not just as E’s brother.

“It’s Time to Begin” – Imagine Dragons

As in the last 3 years, the love and support we have felt came out strong when we were honored to be the Ambassador Family for the 2012 Annual March of Dimes walk in LA on April 28th.  Over 17,000 people gathered in downtown LA to recognize and drive awareness and funding for research to ensure that every baby gets a healthy start and for those of us that have experienced the very challenging experience of very prematurity, the silent comfort of knowing you’re not alone. With our “Pruitt Wondertwins” team we walked 3 miles and had an amazing morning that may ultimately mean just one fewer baby will be born before it’s ready.

Just a few of our dear friends who came out to walk with us, and a massive thanks to all who supported us in every way!

Just a few of our dear friends who came out to walk with us, and a massive thanks to all who supported us in every way!

Lest you think are lives are all minis all the time,  in May I got together with my sister D in Scottsdale, AZ where we go to catch up over cocktails in a pool and cheezy dance clubs by night.

Me, D and the gals in AZ

A few of the girls pre-reunion, 22 indeed:)

A few of the girls pre-reunion, 22 indeed:)

Then in July, we all headed on our first plane trip to visit Gigi (my mom) and Poppy up in Oregon, and oh yes, my 20 year reunion!  The Great 8 assembled in our hometown (missing just one) and had the best time catching up with one another and everyone else.  To say I felt 22 again would be an understatement…I will love my girls forever and all the people I went to highschool with will forever hold a place in my heart…perhaps pretending to be 22 at 38 is even more fun than actually being “22.”

“22” by Taylor Swift

IMG_4786

Q’s first day of school is a success, he is filthy!

As the summer came to a close, and I traded in my 22 year old self for my 38 year old self (mostly, save a trip to Miami at the end of July for work), and got down to business of preparing for E’s transition into the school system in October and Q’s transition to a “typical” pre-school. Files, reports and meetings took over my life, but the biggest report was a genetics test that we had finally scheduled at the recommendation of the UCLA program.

As we waited for fall and Q went off it his first day of pre-school, our elation at Q’s new adventure of exploring his creativity and making new friends blended seamlessly with the building undercurrent of fear as we waited for the days to pass to get to September 14, E’s Genetics appointment.  As our lives hurtled toward their third birthday, one conversation with a parent over coffee changed the course of our lives forever.  Her son was in our class, and he had Angelman Syndrome. For a month this mom dropped hints at the similarities she saw between her son and E. On that hot early fall  September day in Coffee Bean, I asked her if she thought E had AS.  Her response, “I think it’s possible.”

And so, on September 14th, brimming with faux courage and strength, we answered the questions we had answered a thousand times and we watched as they combed over her tiny body dictating comments like, too low of hairline, extra hair on her body, too small toenails, and the list goes on.  And then the words, “she doesn’t present with classic Angelman’s, but we will do the test if you want.”  Our answer, “we do.”

13 days later on September, the world came crashing down over me like a tsunami as I sat at conference table in a meeting.  The test was positive for Angelman Syndrome.  A full deletion of the maternal strand of Chromosome 15, E was indeed “An Angel Among Us.”  In the days that followed nothing changed for her, it was my own acceptance that had to be found. Q was my guiding light. He saw her no differently than the day before, she had no label, no prognosis, she was simply E.  As the waves of love poured in, I found myself aching to feel the same as I had before, but I couldn’t make it happen, I needed time, and unlike all the other times in the past 4 years where I have tried to process on my own, I needed love and support.The love and support was an anchor keeping me tethered to hope and promise, it was all of you who heard my whisper,

Don’t Let Me Go – The Summerset

And lift me up you all did. For GP and MU, I will be eternally grateful to you as well for rescuing me on that fateful day. Thank you.

2 weeks and a soul searching trip to the beach later, I was ready to come back.  Ready to not cry at each meal and watch as Q tried to process why mama was acting different.  Ready to move forward. Ready to fight. Ready to resume my position to give E every opportunity to have the fullest life she is capable and ready to continue to learn from her fight, will, and determination to not let a white paper dictate her future, for she is a case study in the making, but whatever she is, just like Q, you, my sweet baby angel, are perfect,

“Just the way you are” – Bruno Mars

And like everytime life throws us a change, good or more importantly a difficult one, we have a choice as to how we approach it. How we reframe it, refocus the lens and make it work. For me, I had to get up off my mental fetal position, fill my air with lungs and

“Stand” by Rascal Flatts

Over the last 2 months, we have had many changes. New therapies, revised focus on what’s needed for both E and Q, rethinking our collective future as a family and for me personally.  For Q, his continued growth and passion for music and learning has me in awe.  His quick ability to laugh and entertain us all with a song, brings bursts of sunshine in our home.

This year Christmas brought an extra layer of joy as he learned about Santa and began to participate in our longest Anderson family traditions. With a visit from Gigi, we made and decorated Christmas cookies which had Gigi, E and Q in fits of giggles and laughter that warm the heart and soul.

Gigi shows Q how to cut out a Christmas cookie...such fun!

Gigi shows Q how to cut out a Christmas cookie…such fun!

And of course with his love of music, he selected his favorite Christmas song to be none other than “All I Want for Christmas is You,” by Mariah Carey.  We heard this song no less than 500 hundred times, but it only took 2 rounds of listening before he was belting out the words (and the instrumentals when he felt it appropriate).

So,  as 2012 turned to 2013, I knew that more change awaits.  Ones we know, ones we don’t, but with the change comes opportunity, possibility, and the notion that

“Anything can Happen” – Ellie Goulding

And, while there may be some tears, there will be more smiles, laughs, giggles, and special moments to capture and hold dear to our hearts.  It’s these moments I will look for and remind myself to be present for this year. To put down the computer, phone, ipad, and just be. With my minis, KSP, family, friends, and myself. I wish you all the same, more good that bad, happy than sad and for the times when it all feels like it might be too much, the ability to stop and try to find the nugget to make that day, ‘anewfavoriteday.’

Thank you for coming on this journey with me. For continuing to support and love our family, and me.  Happy 2013 everyone, let’s make it ‘anewfavoriteyear.’