Sunday, March 19, 2017

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 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.  

Monday, March 6, 2017

Angel Baby

For some reason I have been thinking about our 'first' child.  Sean and I found out I was pregnant on a cross country trip to New Jersey for a family wedding.  Sean started to notice changes in my body and I was 'late'.  We were in the Smoky Mountains on a hike when I told Sean I would wait a couple of days before taking a test but I might be pregnant.  We laughed, danced, jumped, and celebrated that we were adding a new being to our family.   We happened to be in Ohio near where my maternal grandparents are buried, so we stopped and hunted for the headstones.  I told my grandparents we were going to have a baby, interestingly enough in that moment there wasn't a burst of joy, there was something else, something I couldn't put my finger on, almost sadness.  I pushed the feeling and thought away and we bid our farewell.  Back in the car we shared our news with both sets of grandparents, woohoo, what a new word for us!!

When we got back to Prescott I called a midwife and set up an appointment to start prenatal care.  The pregnancy was still so early on, there wasn't a heartbeat to hear, just some care suggestions to follow and another appointment was made for a 2 weeks later.  At the 10 week appointment we were to hear a heartbeat and start to really bond... we didn't get to hear the heartbeat, the midwife thought she heard a heartbeat and thought that maybe the way my uterus was tipped we would just have to wait to hear at the next appointment.  My intuition started to kick in, something wasn't adding up, something was 'wrong',  I just couldn't get a clear answer, or the answer I wanted, to be pregnant.  A few days later there was blood, just a little bit, and again the desire to be pregnant was so strong I felt as if there was a great will pressing to stay pregnant.  That night two awareness washed over me, first, I could worry about this little one from that moment until the day one of us would die, or I could have faith that whatever was to happen to this child, the child had a ring of guardians guiding, loving, comforting, and holding their heart.  The second, my concept of prayer changed, at first I prayed that I could keep this child, 'please, let me stay pregnant and keep this child'.  The prayer changed to 'please, give me strength to walk through whatever was in store with grace'.  I think my greatest fear was that I would be too frightened to get pregnant again.  That by losing this child and having to go through contractions, I would lose all my courage to be a mom.  I also was worried that Sean would be devastated and we wouldn't know what to do as a couple.

The next day I was returned to normalcy, I was pregnant, I hadn't miscarried, I could go on being excited.  3 days later I started the process of miscarrying.  I was at a function with all women and I felt completely alone, I hadn't shared with very many people so I couldn't seem to share about our impending loss.  Calling the mid-wife, she suggested I get in to have an ultrasound with the doctor as soon as possible which was 3 days away.  Sean stayed by my side and made sure to keep me well fed and hydrated.  One thing that our life is proving to us is that our relationship has a foundation that keeps deepening.  I fall further and further in love with Sean and we seem to meet each other where we are and move forward to meet what ever challenge, opportunity, adventure that awaits us.

Late at night the experience got to be too much to handle, so I woke Sean up to take me to the hospital.  When we arrived I realized I had made a huge mistake, but there was too much fear, blood, and unknown for us to handle on our own.  I was admitted and we spent the next 5 hours in the ER negotiating what the doctors and nurses wanted for me and what I wanted.  There was an IV inserted for fluids and potential medicine, an ultrasound to make sure all was okay, a pelvic exam, and a shot to help with the bleeding.  I felt battered and bruised, and mostly heart broken.  A dream didn't get to come into reality.  The bruise from the IV seemed to linger just a little longer to remind me of that night so I couldn't whisk the experience under some rug and forget.
I wanted to be a mom from a young age, well actually a grandma, but I soon realized I had to be a mom before I could be a grandma.  I didn't realize how excited I was to have the potential of being a mom and journey the road of parenthood.  That night we realized that we were ecstatic about being parents, our lives were ripe with anticipation for another being to join our family!
Thank goodness for family, friends, and healing.  When I went into the doctor for the followup ultra sound his first words were, "Wait 3 bleeds and try again, you will make an amazing Mom".  What sweet, sweet words to have spoken!  The ice started to melt from my heart and I knew I wasn't broken.  Sean and I could be parents, we would be parents.  This little being's journey was just a little shorter than either of us expected.

I think having this experience helped Sean and I so much more with Liam.  Maybe that was our first little being's gift, to prepare us for the wild adventure we have had with Liam.  As some of the research has hypothesized, the first born paves the path, the second learns from the first so maybe we are all learning from this little being who didn't get to take a breath.  One thing we learned for sure, we knew we wanted a child and  almost exactly a year after the miscarriage, Liam was born into the world.  I don't think that is a coincidence.
People who watch Liam and I interact are intrigued that he is our only child, I guess there is a nervousness that follows a first time mother.  Sitting on the floor feeling so unsure of what was about to happen, and praying to be guided, a trust was formed that whatever happened with our babies, we would be given the strength to walk through with grace.  I am forever grateful for our 'first' baby and the gift that little angel gave us!  And who knows, maybe someday Liam will be a big brother, I am still wrapping my head around that thought.

Friday, March 3, 2017

Learning, teaching, building

I teach Communications, Ethics, some Business, and Thai massage at the local massage school.  The last couple weeks I have had the opportunity to be in class more and have been reflecting on the journey of learning.  Liam has been in the classroom since he was 7 weeks old.  When the schedule was being made for the session Liam was to be born in, I told the director my due date.  The last class I taught was Friday, September 11, and Liam was born Monday, September 14, I don't know if I could have planned that any better!

The Communication class is spread out throughout the whole program so sometimes there are big gaps when I won't be with the students.  My maternity leave happened to be during one of these gaps, I wasn't scheduled to comeback to class until the end of October so Liam was ready to join me as my assistant.  When Liam is with Sean or someone else, students will ask where he is, when he is at the school, students will stop to smile, wave, and acknowledge Liam.  He has become a mascot of sorts for the school.  One of the concerns I had when we first found out that Liam may have Down Syndrome was that the public may not know how to handle his diagnosis and I wouldn't be able to handle the public.  I was concerned that we would be pitied, that he would be treated different, that he wouldn't be accepted.  My concerns have been proven false, thank goodness!  More than anything, I think by having him so involved with school, he has learned to be quiet while others are talking (for the most part), to be at ease in large groups of people, and to interact with anyone and everyone.
I have to laugh, when I was in college, the principal of the high school I graduated from bet me a steak dinner I would become a teacher.  At the time I couldn't fathom being stuck in a classroom with a bunch of punk kids trying to teach some subject that the students felt was a waste of time.  I also remember thinking he was probably right, I would end up teaching at some point.  I come from a line of teachers, my mom was an elementary/middle school teacher, my dad ran many trainings in his field, my maternal grandfather was an English teacher, my paternal grandmother went to school to be a teacher, my paternal grandfather was a mechanic teacher, an aunt teaches music lessons, an uncle is a professor, and a distant cousin is a teacher in a foreign country.  Plus, one of my first jobs in high school was teaching ski and snowboard lessons.  What I realize now is that I didn't really enjoy the traditional classroom, the distance that teachers had to maintain because the student-teacher ratio was so high, the lessons that didn't seem to fit into what was happening in real time, and the pain of growing up.
Today the class size is less than 20, the subject matter is all about relationships... with self and others. We sit in a circle so there is no chance for students to hide, there is an air of equality in the room, there is meditation and body movement, there is sharing about experiences, we are all there to learn and teach.  I know I learn from each class, sometimes the lessons are about some weakness in my own belief system, sometimes the lesson is how far I have come in my own journey.
Mom's eyes use to light up when she would talk about her students.  She loved her classes, sometimes not all the students won her heart, but I knew that she cared about each and every one of her classes.  I was baffled by how she could spend so many hours prepping for class, grading papers, dealing with discipline challenges, and teaching the same thing over and over each year.  I couldn't connect with her pure desire to make a space for these punk kids to explore their individuality.  I didn't understand why she had such a difficult time deciding to retire.  Now I understand.  Each of the classes I have had the opportunity to be with has held my heart, they have captured a moment in time.  Some of the students I don't have as easy of a time remembering their story, the class as a whole, however, I remember their story.  Time becomes obsolete when I am in the classroom with the students.  As the students get the ah-ha's there is a welling up that happens, sometime tears will form.  When students are in the middle of the program and they are about to burst because of the pressures from the demands put on them, and I have that feeling they are just about to burst through some bind that holds them back, I get giddy and hold that sacred space for them.  I understand now why Mom couldn't just walk away from decades of teaching, teaching had transformed her as well.  I do wish I could have her here to check in with, to bounce ideas off of, to share student stories.  I am grateful we had some time to be teachers together, I just wish there was more time.

At her memorial there was a message that Mom did many little things that added up to great things.  Like walking every night with a friend added up to thousands of miles.  Showing up daily for work influenced hundreds of kids... and adults.  Driving to Flagstaff each week to capture her dream and finish her teaching degree gave her kids a role model to reach for their dreams- Engineer, Ecologist Guide, and Healer/Teacher.  As Liam explores his world and individuality Mom reminds me that the best lesson I can teach Liam is that when he falls and gets a bump, like today, I will be near to soothe and will help him to reach for his dream, or the top of the stairs.  I guess, I better pay up my end of the bet.

Sunday, February 26, 2017

Chores, memories, and more

Today was a day spent in rare form, pajamas, tea, fire in stove, and tackling chores.  Today consisted of going through files to get tax information collected, filling out insurance information on the computer, and filling out paperwork to get Liam into the system for continued support.
Going through 2016's receipts, appointments, and bills brought a flood of memories and sadness.  Going through my schedule for appointments with clients and finding eraser marks through what seemed to be random dates until I remembered.  I remembered January 5th getting the call that Mom wasn't doing so well, canceling appointments with clients so I could be with her and Dad at the hospital as they discussed hospice care options.  Mom dying on the 12th, January 16th Mom's memorial, and then trying to come back to the office and clients January 20th.  I can't fathom what was going through my head, if anything.

I think I was trying to fool myself into thinking that life was moving on in February, that I could handle the adventure of being Liam's mom, be a massage therapist, and a wife.  I also know that I made the decision to give my 60 day notice at the office, thank goodness for intuition, after entering all the yearly data, the office rent was more than I made the first 3 months of the year.  Then March 11th, a note about meeting with the Heart Surgeon for Liam's surgery.  March 19, the office was cleaned and ready to be turned over to a new tenant.  My career as a massage therapist radically changed.
And the year continued, bills were still being paid from Liam's birth in 2015.  Though, I did not have a choice how Liam was to enter the world, the hospital and insurance company did not deem Liam's birth an emergency so we got a full medical bill.  Thank goodness for our families, most of all the medical bills were taken care of so we didn't have to carry the full burden of Liam's birth, heart surgery, and other procedures.  Some clients here and there willing to be flexible with my time, willing to have me come to their homes to do the massages.  Doctor's appointments here in Prescott and down in Phoenix running every 3-4 months.
Sometime in October, I lost the part of me that ran the checks and balances of running a practice.  I had to hunt to find when deposits were made and for what amounts.  In the 14 years of having a business, I always had records of what I spent, where, when, etc at my fingertips.  This year, I had to hunt a little deeper, spend a little more time on the computer in bank statements, seeming to add salt to the wound of 2016.  Thank goodness for Sean, he took Liam duty so my attention could be spent on this tedious task!
When Liam was born we were told to check into Social Security Supplemental Insurance for Liam.  Since he received the diagnosis of Trisomy 21, there were programs to help with his needs.  He had already been signed up for a NICU program to see a nurse in our home, an Early Intervention Program, but this seemed to be something that could help in other ways.  So with our 2 week old son, we went down to SSA, sat in the waiting area for what felt like an eternity, finally got to meet with someone, and were denied because we made too much money.  We walked out with a weird sense of defeat that we couldn't get Liam what we thought he might need and yet relief that we were doing okay financially as a family, we didn't need the assistance.  We let SSA and SSI go to the side and figured with our insurance we could take care of Liam's needs.  Recently there has been a new influx of inquire of why we didn't have more governmental support for Liam, so I thought I would check in about getting him more.
We spent once more what seemed to be an eternity at DES to find out we were denied because of what our family makes, and again, we walked out with the mix of defeat and relief.  This time there is a little more defeat for me, Liam needs more support than what is given by the EIP and our insurance as a family is in flux.  The Department of Developmental Disabilities has a program that Liam may qualify for so I have just sent that paperwork in today.  Filling out the paperwork brought a wave of grief.  The grief is in knowing that at 17 months, Liam 'should' be walking, feeding himself, talking more, and he isn't.  He isn't able to take care of himself like a 17 month old 'should'.  I do know he is perfectly Liam, standing at the couch with a grin from ear to ear, crawling and singing as we chase him, climbing the stairs with a sense of purpose, babbling sweet nothings to us then squeezing his cheeks up, and teasing us with those precious moments he puts food in his mouth and that morsel travels down to his stomach instead of being immediately spit out.  I savor knowing that I get to cuddle my 'baby' and take him to work with me because he isn't running around and into everything, though he is getting into a lot more!

I have been taught that grief is layered and at each layer there is a new space that requires a visit.  I am learning to lean into the grief rather than run from it.  I have learned that grief is part of loving, and that the more one allows one self to grieve, the greater they can love.  The feeling of grief still feels overwhelming and yet, as I write this in my pajamas, I have hope that love will continue to unfold and reach deeper realms.

Tuesday, February 14, 2017

New meaning to February 14...

With Liam 24 hours old and in the NICU, there was a lot to digest and learn.  When we arrived on Tuesday afternoon, the hospitalist and attending nurse were checking out Liam's central lines.  He needed a platelet transfusion, that is what won his helicopter ride down to Phoenix Children's Hospital.  The best way to get blood in and out of his system was to put central lines through his umbilical cord.  So the first image we have of Liam that day was this little belly with white and black paste over the area of a belly button.  He had monitor leads for his respiration, heart beat, temperature, the whole shebang!  Sean and I learned quickly how to hold Liam through the lines but I don't think either of us got used to the constant bing of some monitor coming loose or us moving too quickly.

Something alerted the doctors that there might be something going on with his heart so with in hours of us arriving, a tech was checking his heart.  Thinking back there must have been an O2 read that was low, I did hear only one doctor thought they heard a murmur.  Of course the tech couldn't share what she was learning about our son, but the wait to meet a doctor felt like a life time.  The next morning when the medical team was doing their rounds the lead doctor let us know that a cardiologist would be meeting with us once they were done.
Being in the hospital was one thing, being in a NICU was another, I couldn't seem to catch up to all the information coming at us nor could I gauge how 'bad' things were.  The nurses were all so thoughtful and pleasant but they made sure to stay away from sharing too much about Liam other than his immediate care.  I have to admit, there were only a couple of people in my past who had Down Syndrome, one was a young man in Williams who attended school and another was a young man I taught how to ski at the Special Olympics.  I never knew that 50% of kids diagnosed with Down Syndrome have a heart condition.  Almost 75% have a thyroid issue, some have eye concerns, some have ear concerns, there are so many ways the extra chromosome can play out.

Liam's heart had what the doctors call an AV Canal.  His left and right atriums were open to each other, there was a flap of skin that helped keep the left and right ventricles separate when his heart beat but there was some oxygenated and deoxygenated blood mixing.  He also only had one valve that separated the atriums and the ventricles instead of two valves.  The heart surgery he had in April 'fixed' these anomalies (I put 'fix' in parenthesis because to me Liam's heart didn't need fixed,  it just needed support).  He now has a 4 chamber heart with 2 valves and what we call an upside down heart beat (due to the way his system compensated before surgery).  His cardiologist is pleased and excited with Liam's heart and his healing.  February 14th is congenital heart defect awareness day so today we celebrate more than just love, we celebrate Liam's heart, we celebrate the effort and persistence that Liam had to pump blood, grow, and live for 7 months with a heart that needed just a little bit of support.  The condition Liam has is one of the most common cases that show up for kids with Down Syndrome and seems to be an easier 'fix'.   Today I celebrate the love I share with Sean, and we celebrate the heart and soul our son has to live!

Sunday, February 12, 2017

A rough day...

This weekend has been a little rough for Liam and me.  Sean had the opportunity to attend a workshop to further his training so he has been gone since Thursday.  I have always been so grateful for the amazing father he is to Liam and when he is gone our little family feels his absence!  Liam woke up yesterday at 5am and was ready to play, that isn't so bad, but the 10:30pm feed the night before left me a little groggy.  This morning he woke up later which was nice but not having Sean has left us both a little edgy.
We started working with another feeding therapist, this therapist won't take no for an answer.  Well, Liam has changed his eating habits, now he almost seems to be acting out when he is in the highchair.  Before he would take some food in, sometimes spit some out, sometimes swallow, sometimes refuse, but for the most part he seemed to enjoy being in his chair.  This weekend has been a different story, he cried when I put him in his chair, he is spitting more out than swallowing, he is refusing more and I am tired so we are just not having a good mix.

I am so grateful a friend let me know that as a parent I would be critiqued and to make sure not to take the criticism personal, the lesson of the week!  Liam's eating has become a tender spot.  Are we doing enough, are we doing everything right, what are we missing, how can we support him more?  Again, thank goodness for friends who remind us, me, that what we are doing is perfect, he is his own person and will eat when he is ready, we are supporting him in more ways than we even know!
As I wrote in a recent post, our lives have become normalized and so I forget that some of what we are going through is not typical.  We have a child who has a whole other band he is dancing to.  He is developing in a way that has delays in areas and acceleration in others.  He is cruising the furniture, bear crawling, starting to communicate with sign language, knows what we ask of him, interacts with most every person he makes eye contact with.  But he doesn't eat a meal like another 17 month old, he is still crawling when his younger peers are walking, he wears size 12 month instead of 18 month.  Of course all of these are comparisons and I hold in my heart that each of us have a unique way of showing up in the world so what others do is obsolete.  As a parent, sometimes I doubt, and today I am grateful for the permission to just let that come and go.  I imagine most parents have a moment here and there (maybe when they are exhausted) when doubt creeps in and a heaviness tries to settle.

I am also so grateful that here is this little being who came into the world under high stress, 'low-tone', poked, prodded, helicoptered, hooked to machines, burned 3/4 of his intake calories just to stay alive, had a heart surgery, and has people manipulate his mouth, his limbs, and push his comfort zone just to smile at the people who make contact.  He spreads joy wherever he is, I am not aloud to arrive places when he isn't with me, his love is so pure, and he has an eagerness to explore his Grandma Chris would just adore!  I have met parent's who have children who will never speak, walk, or engage  and find so much to be grateful for in their children.  I guess that is the gift of parenthood, meeting our children where they are, making a safe environment for them to thrive, and push them just enough to expand their comfort zones.  The uncomfortable part for me is how my comfort zone continues to be expanded reaching further and further into the unknown.  Some days, like this weekend, I wish I could just rest for a moment and regroup.  Thank goodness I can tap into the eternal strength, rest gently, and receive support from meditation, friends, family, and Mama Nature.  Well, and sleep, that is what I will seek the most tonight.

Saturday, February 11, 2017


There is no way I could forget family!!  Part of having this extraordinary life is that we are blessed from every direction friends AND family!  I feel lucky that I have family members I can call friends, I know that some people aren't able to do that.  Liam has been blessed with 3 cousins, 3 uncles, 2 aunts,  8 great-aunts, 7 great-uncles, 4 grandparents, 3 great-grandparents, plus all the cousins somehow 'removed'.  That is a lot of love for our little guy!
When we were gearing up for Liam's heart surgery, we knew that we might be in over our heads financially, even with insurance.  We reached out to our family and the circle of family grew exponentially, there were family members contacting us who we never met before or if we had, we were too little to remember.  There has been a sense of deepening with our family circle and Liam's surgery was taken care of.
We have been able to rest in family member's homes while they loved on Liam, family has set us up for lengthy visits, fed us, sent Liam gifts and cards, and most of all they have been the rock we can rest on when we are weary.  I imagine some of our family member's not realizing that just by sending texts, notes, or calling have eased our hearts.
Of course the absence of my mom is still so sharply felt I have a hard time thinking of family and not thinking about her.  I think that is why I was didn't share first about family, I needed a warm up.  I needed a moment to recognize all the wonderful blessings we are grateful for.  Now I can share that same gratitude about family.  There are so many people who are still breathing, able to hug, able to call, and I thank each of you for who you are!!!
Today Liam and I got to spend some time with my Dad.  What a wonderful way to celebrate life, we shared a meal, walked, shared stories, and introduced Liam to the world.  We got to listen to music, check out kaleidoscopes, meet new people, and spend time with a very special friend.
I imagine these memories will fade like the sunset, I also believe that these memories are in our cells, and become part of our souls.  Maybe that is another reason I needed to write about friends first, family is in every fiber of my being and so I can't imagine a life without the family we have.  Well, now you know, as the reader, part of my soul make up, family and friends are musts!