“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.’

Cover Image shared from:

“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.’

“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

“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.  

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.

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!

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:)

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

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!

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.’