Life unfolding...

Oh wow!  Time has truly slipped by!  So much has happened in the last month and a half and yet so much is still the same.  I guess that is what life is about, enjoying the moments, making memories, and time passes almost unnoticed.


A couple of really exciting things have happened since the last post.  Liam had his first on the ground dance recital.  The last 2 he has been strapped to me, this one he was moving about with just a little bit of assistance from me.  So when I write dance recital, he and his dance partner did an obstacle course to music.  I imagine by the next one, there will be more dancing involved because this little man is getting his groove on!

The other new news is that our family is growing, Liam will be a big brother come mid-late January 2018.  We are all excited to share the news and I am finally feeling better to actually sit and write.  We have a doctor appointment on Tuesday with the hopes that we can get a clear ultrasound of Baby's heart, lungs, brain, and other anatomy.  We met with a midwife who can support us, and she wants to make sure to know as much about this little one's anatomy before we proceed.  I am so grateful for all of the support we have in this community and for the opportunity to have such a wide spread support.   Liam has been curious about my belly (it is growing!) and has gone out of his way to come pat it a few times.

I will admit there was a concern about having a second child, shoot, there are still concerns.  My concerns are going through the heartbreak of feeling so violated during a time that is so sacred, having a child's first touches be those from hurried hands instead of welcoming hands, of being the brunt of crude jokes in my most vulnerable space.  Someone asked if I was concerned this child would also have Down Syndrome, my answer, 'No'!  We already know what to expect, we already have that type of joy in our home!  What will we do with a child who one day blinks and the next rolls over?!?  So though there are concerns, I also know that having a second child is a desire both Sean and I have, and the only way through those concerns or fear is to continue to walk through them.  Thank goodness for the loving people we have in our lives who support our every step!

Back to Liam and his amazingness!  He has been growing by leaps and bounds!  We had some friends come from out of town and took a walk.  Liam followed the girls for about a 1/2 mile, walking on his own.  Anytime I would think he was ready to be carried he would wiggle down and keep trekking.  I think he has his Grandma Chris' love for walking, something we can support him with!





He is communicating with signing more and more, which keeps us on our toes to know what he is trying to communicate.  Some of the signs are morphed just a little so I am learning Liam signing along with ASL.  Sharing Down Syndrome of Arizona gave us a DVD of sign language and so we watch that together.  I am always so amazed at how fast his brain absorbs information.  Today in dance class, he was Freeze Dancing, so when the music stopped he was to freeze.  He FROZE!  We have never played that game, and here he was like he had been doing this for months!






He LOVES books, we have made a space for some of his books so he can grab books for us to read to him.  What he does is pulls out a bunch of books, grabs one, either slides it across the floor or carries it to us.  We start to read and then he wiggles down or away to grab another book.  I know when he is tired or really likes a book because he will last the whole story.  His favorite song is "Itsy Bitsy Spider", he is getting the motions down as well, of course, washing the spider out is his favorite part! Our lives are full of entertainment!

My wish for him is that he would take some of this energy and start to eat on his own.  He is still being tube fed.  I have been in the midst of phone calls to doctors, service coordinators, therapists, insurance advocates, writing and receiving emails, Internet investigating, and deep breathing trying to get Liam into this intensive feeding therapy down at Phoenix Children's Hospital.  When we decided to get Liam more support I didn't realize the advocacy that was involved, I guess, I wouldn't change things either.  Energy levels haven't been so great, so there are days the feeling of defeat can be strong.  Other days, I remember that there is a time, a place, and a pace that is out of my hands.  My true job is to enjoy Liam, read books, dance, play, and explore the world with him.  If he needs tube feeding to keep him strong, I can be willing... maybe.  What a great teacher in collaboration!

Celebrating Spring...

“There are two basic motivating forces: fear and love. When we are afraid, we pull back from life. When we are in love, we open to all that life has to offer with passion, excitement, and acceptance. We need to learn to love ourselves first, in all our glory and our imperfections. If we cannot love ourselves, we cannot fully open to our ability to love others or our potential to create. Evolution and all hopes for a better world rest in the fearlessness and open-hearted vision of people who embrace life.” ~ John Lennon

Spring has always been a magical time in my life.  Up on the ski slopes, the snow would start to get a crust that wasn't found any other time in the year, the mix of snow and tree buds always intrigued me.  The field we grew up living in would thaw and become a huge mud flat for us to stomp around in, creating mud pies, and anything else mud.  The sun always seemed to surprise me, I would inevitably think I was late for school at 7am.  There was an urgency for life, school was ending soon, the heat of the summer would be knocking on the door soon, the last runs of the season were being savored, some years with a 2 foot path of snow to the lift so we could catch just a couple more runs.  


My grandfather, Glenn passed away in the spring.  He was the first person, outside of my parents to teach me about love.  One night, I awoke and couldn't sleep, I noticed a light on in the house so went to investigate, Grandpa couldn't sleep either.  He made us toast with his homegrown, homemade, raspberry jam, my mouth still waters for his jam!  He would dance with me for what seemed like hours around the house.  He would read to my brother and me as we were going to sleep, and play all sorts of funny little games children make up.  In his presence I always felt loved, and I always felt as if he was so proud of me, and not just me, all of his grandchildren.  I gained courage from his love to love myself, to explore the world with an open heart and to love kindly.


Somewhere in my youth I lost the courage to love myself.  Earning other peoples' love and acceptance became more important.  Fear became the driving force and even though I was moving through life, going through the motions of seeking a passion, participating in thrilling activities to gain excitement, changing with every crowd so that I could gain acceptance, I was numb.  I knew what was happening wasn't 'normal' and yet I couldn't seem to stop.  I don't know how long this cycle ran, I can only imagine at least a decade.  

On March 17, 2007, I was finally given a moment to pause, reset and let my heart thaw.  There was a realization that with all the need to earn acceptance and love, I had no idea who I was and I was scared to find out my truth!  Over the last 10 years there have been shoulders to cry on, chances to explore what being alive really means, chances to have an intimate relationship with my Creator, chances to open back up to passion, excitement, acceptance, and room top practice loving myself again.  I have gained courage to explore the world with an open heart and to love kindly through the love of some amazing people!

More reasons to celebrate in this spring include Liam's half birthday on March 14, 'Pi Day' and on March 21 we get to celebrate World Down Syndrome Day, a day to celebrate the extra chromosome 21 (3; 21).  There are so many ways to celebrate this day, silly socks, crazy hats, donating to an organization, doing random acts of kindness, and mostly loving the people who have been blessed with an extra gift!  We are deciding what is in store for 3/21 this year, what we do know is that silly socks and hats were a blast at a recent gathering, and random acts of kindness are always fun.

The other season that has always been magical is fall.  In the fall there is this excitement from school days of beginning classes again.  Who would the teacher be?  Who would the friends be?  What would transpire this year?  The fall of 2009, I met Sean.  The night we met, I felt like a bumbling fool, and could only be fully me in all my glory and imperfections!  It took another month and a half for me to have another chance with him, I needed more time and practice in loving myself.  Since that night he has been the reason I thrive to love.  I know I can't meet his love if I don't love myself.  His love runs so deep sometimes I get frightened and shut back down, just to open back up and love again.  Our relationship has taught me about the fearlessness of love, the shear excitement of being alive, and reminds me that with love, the world is healing and is a better place.  I joked with friends before Liam was born that he was the product of our overflowing love...now I believe that even more!  How could we be so lucky to be the parents to this little being who loves most everyone!?  Who's heart is so freely open to so many that in grocery stores people recognize him before us?  

When Liam was first born love was put to the test, could we remain open-hearted and full of love.  There were moments that fear won, thankfully they were just moments!  Could we be gentle with our own imperfections and fears?  Remembering those days what I get is an overflowing of love.  

Every decision we made was from what we imagined to be a supple space of love.  Today, getting to witness Liam explore his world, the people he loves, the people who love him, and knowing that by our love for ourselves and for each other, his world is a better place.  

A New Beginning...

Happy New Year!  Welcoming in 2017 is very much like waking from a dream that feels too real to be a dream but too surreal to be reality.  2016 was a year filled with opportunities for growth, grieving, change, joy, and journeying into an inner realm.

This time last year my mom was asking if she looked 'cancery'.  I had to tell her the truth, she did.  She consented to going to the hospital to find relief and 'get back on track'.  She passed away in her home on the 12th of January.  I miss her everyday and yet, because of what I believe, I feel her presence everyday.  I will have a thought that seems just a little too close to what she would say and HOW she would say it.  I will feel a warmth at the small of my back, almost as if a hand is placed there.  
My mom and I had a good relationship, we had healed some of the wounds teenage years left behind.  I felt as if I got to meet my mom as a woman rather than a child and she met me as a woman too.  We had some amazing travel adventures, to Europe, and all across the country.  

This blog isn't just about her though, this is about Life, this is about bumbling through all the different opportunities that present in life.  My hope is that this can be a place to share all the bounty of what each experience brings, a place to share little bits of what I am learning, experiencing, and grieving.  

Thank you for joining in the journey and may you recognize your story in mine.