Thursday, August 17, 2017

Changes, adventures, and awarenesses...

Time has slipped past again.  What a wild awareness of how priorities can be switched, rearranged, and completely forgotten.  The last couple of weeks, my evenings have been spent fighting Liam to go to sleep.  He has been getting 90% asleep and then waking himself up or getting uncomfortable somehow leading to his eyes popping open and we start the dance all over.  A thought came to me the other night, a friend once shared she had read or heard that a child starts to break away from a connected consciousness and starts to become sovereign around two.  Liam is turning two next month and I am curious if we are getting to witness this in action.  Plus, there is another heart beat in our home now, and change is brewing.  What a gift to have this little being remind me to ground, breathe, and relax, if I get wired, he feeds on that and we end up with pinches, tears, and a fussiness that is usually not present.  I laugh because each time I think I am getting a hang of this mommy thing, the rules change, and I am at square one again, thank goodness, I am always up for an adventure!
The last month has been an adventure in gathering information, collaborating with doctors and health care teams, passing information to coordinators, and taking time to allow for guidance to unfold.
There hasn't been much movement in getting Liam into the feeding therapy other than we have 3 letters of medical necessity that have been given to the DDD coordinator and we have requested his primary care provider to refer Liam back to the feeding evaluation.  Each time I think we are done with this feeding therapy, another door opens and in we go!

With this new little being, we are wanting to gather information about how this little one is doing.  I was confused with a blood test thinking that I was receiving a full panel of screens but in reality it was just for Down Syndrome.  As I wrote before, the fear of a child having Down Syndrome is minimal since we know the joy that Liam has brought us and we already have connections to support a child with Down Syndrome so this screen wasn't exactly what we thought.  And then there has been so much information about how Iceland has almost a 0% Down Syndrome population due to genetic testing and terminating positive pregnancies and my heart drops.  All the false positives that were terminated and all the joy that is not present in our world.  I also understand there are huge burdens for some children with Down Syndrome, and isn't that a possibility for any child?  Being at Phoenix Children's Hospital I met mothers with 'typical' children diagnosed with terminal cancer who had been there for months, other conditions for frequent visits for testing or follow ups, therapies to be rehabilitated or habilitated.  I guess what comes to me is that there are no guarantees.  And why would one diagnosis be singled out to be terminated?  A friend shared, the fear of difference, could be a reason, and that makes so much sense to me.  My desire for adventure puts me in situations to meet differences, to stay curious, open minded, and open hearted, but some do not have that same thirst.  So with all of this news, I am trying to stay curious, not take the decisions of others personally and to truly enjoy the absolute joy we have in our home!

Oh and the joy we are experiencing right now!  Liam is growing by leaps and bounds.  His personality is blossoming each day and what a personality!  He is letting us know his likes and dislikes with laughs, pinches, signs, snubbing his nose, and faces.  His walking is getting steadier, he is starting to navigate thresholds going down, he has about 20 signs that he uses to communicate and each day there seems to be another one added.  Going out to public places, Liam has yet to meet a stranger, he loves high fives, 'knuckle bumps', and waves to any one and EVERYONE, even if the gesture is not reciprocated.  We are excited to find out how he does having a baby brother in January.

This week also marks a new journey for me personally.  I have been part of ASIS Massage Education as a teacher and today I had the privilege of graduating my last class.  Being pregnant, wanting to experience Liam's joys everyday, and being present for Sean, I have chosen to step away from ASIS.  This is one of multiple ways that an external identity has been sluffed away so that there can be more space for an authenticity to be present of 'being' instead of 'doing'.  The last 20 years, I have identified myself with what I do, and I would much rather have an identity of 'being' instead of 'doing'.  And after writing that I have to giggle, I will still continue to 'do' massage through this pregnancy until my body lets me know I need to rest.  I feel so grateful for the experience of working with new massage therapists, guiding them through personal explorations and learning so much about myself in the process.  I am excited to put all that I have taught others into practice in my own daily practice.  And the adventures continue!





  

Friday, July 14, 2017

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!








Tuesday, May 23, 2017

Perseverance, little wins, little set backs....

I didn't realize how much time had passed since the last entry.  Keeping up with Liam has become a
lot more involved.  This little being is such a joy!  He is mastering his steps for walking, getting 14 steps as the record (his physical therapist was counting, I was squealing).  His favorite 'walk' is between the couch and an oversized chair, though he is getting adventurous and wondering a little further.  He is almost to the point where he is comfortable going from a 'bear crawl' to standing, though sometimes the core muscles just don't want to hold!  He has received a few bumps and bruises, most recently at the cardiologist office today while chasing a crayon.  His love for music is deepening, we had 3 guitars playing and he went from one to the other, dancing the 'Liam jig'.  His favorite song is 'The Itsy Bitsy Spider', he is having fun with the hand motions for sure.  In June he will participate in a local dance recital, his class' dance is actually an obstacle course, since he loves to dance, there may be an impromptu step or two.
Liam and I took a quick trip up to the Bay Area to visit my brother and his family.  We had a wonderful visit and Liam had some older kids to help give him incentive to walk, and some courage to explore going down heights (i.e. head first off the bed, thank goodness only 12 inches high).  Liam is a fantastic traveler, making friends with anyone he can.  On the way home, the flight was delayed an hour (2 past his bed time) so he slept until 15 minutes before touch down, woke up, smiled, and waved at our neighbor before closing his eyes again.  Watching him interact with people, makes my day!  I will feel him wiggling around, and realize he is double waving at someone behind us, making a new friend.








And being part of life, we have our struggles.  Liam is still not taking in his nutrition orally, he has taken in 3 1/2 ounces of food, milk, etc. in a sitting and that was wonderful, but has not done that again.  He usually takes in about an ounces or 2.  When Sean's job changed we didn't have insurance and decided the time had come to find out if Liam was eligible for something called Long Term Care.  Great news, he is, not so great news, I am in a stand still with getting all the services put in place for Liam.



I never thought I would have to fight so hard to get what I think Liam deserves.  And as I am reminded, I am not fighting, I am advocating, there is no bad guy.  Of all the lessons motherhood has brought to my attention, using my voice, asking for what I need or Liam needs, has been most prevalent.  Of course, patience is a close second, I think that one was a lesson from my own toddler years!  Right now, being patient that some of the requests that I have are outside of the box, that Liam is a whole being and needs both Physical therapy and Feeding therapy, and remembering that this little being has a journey I am only given tidbits of clarity around all test those ounces of patience I have.  Thank goodness for the amazing family we have and for friends who can help to shift some of the jumbled thoughts running through my head.




So as I ramble tonight, I focus on the joy that Liam is.  Today, the cardiologist shared that Liam's heart is doing fantastic and we can start spreading out his followup appointments.  What a breath of fresh air!  Amazing that just a year ago, we were learning how to give Liam his feeds, picking him up without raising his arms, and monitoring any infection warnings or abnormalities.  Today, we are chasing a speedy crawler as he races to take the clock off the night stand. Watching Liam push a book across the room to be read, makes my heart warm.  Hearing the giggles of both Sean and Liam as they play in the other room deepens the love I have for both of them.  And as I sit, typing this out, with a quiet house except the whirring of Liam's feeding machine, I feel a rooted contentment that whatever we have in store for the future, we are always guided, we are always taken care of, and there is always time to play!






Monday, April 17, 2017

Easter, Hope, and Living...


My family celebrated Easter, there were eggs to be dyed and found, baskets to be enjoyed, and being in church or out in nature.  As a family we attended multiple churches, all had their own feel, and community we are still in touch with today.  There was a church in Flagstaff we attended for a few years and to this day we still are in touch with the pastor's wife (20+ years later).  My parents and I would sing at the Episcopal/Lutheran church in Williams because the woman we took lessons with attended the church and this was a way to have a 'recital'.  There were many years that Easter meant a hike, skiing, or adventuring in some way out in nature.  In the last few years there was a pilgrimage to Phoenix to join my grandma and aunt in attending their church.  There was always excitement of hearing the music, hunting eggs (when we were younger) and enjoying friends and family.  I have to admit, my favorite Easter's are not in church.   My favorite Easters have been out in Nature.

I am so grateful for my parents and their deep faith, they would share what Easter meant to them, what having faith 'looked' like to them.  Mom shared with us that to her Easter meant that we could have hope.  There was this horrible chain of events and on Easter morning, hope was born.  I don't know that I felt the magnitude of her story until adulthood.  Only when I was weathering storms could I fully embrace the thought that there may be hope.  Dad shared with us that by being good neighbors, by treating people with dignity even if we didn't think they deserved it, helped us understand what Christ-like meant, we can't be the judge, we don't know what someone is going through or what pain they may be in.  These are the gifts that lead me through life, to have hope, to be kind, and to be curious!  The lesson that both Mom and Dad instilled in us happened when we were in nature.  They gifted us the idea that we are all One, the Earth, the plants, animals, water, sky, Sun, and neighbors, we are ALL ONE.  They taught us how to make moments sacred, to ask for permission to enter spaces, and to witness life happening all around.  I think that is why those nature Easters mean so much to me.  

There was no surprise that the urge to visit the Grand Canyon came up this weekend.  I have been nervous about packing Liam, with his feeding pump, tubes, health, etc., I have let there be excuse after excuse of why the time wasn't right to dip off the edge of the Canyon.  Well, now was the time!  We packed water, food, formula, the feeding pump, diapers, sunscreen, and off we went.  There was a loose goal in mind, Cedar Ridge, on the South Kaibab trail, 1 1/2 miles.  I type that and giggle, 1 1/2 miles, what!?!?  That is a walk in the park, anywhere else!  In the Canyon, that is 1 1/2 miles straight down and 1 1/2 miles straight up.  The seduction of the downhill is almost overpowering, thank goodness for the many years of hiking the trail, I knew not to get sucked in.

The hike out was okay, the temperature was rising, and Liam's weight was tiring.  By the last few switchbacks, I could tell, I was getting done.  Sean was so supportive, I think he knew how important getting to carry Liam in and out was to me, he let me set the pace and checked in.  At the last few switchbacks, he checked in and for some reason, I heard the request differently.  What I heard was more like a declaration, "Here, give Liam to me."  I obeyed, and thank goodness feeling 20+ pounds lighter I could finally breathe, I didn't realize how tired I was!  I always have to laugh, 1/2 hour after touching the rim coming out, I am restored and ready to go, this weekend was no different!  I have hope to make the next Canyon hike down to Indian Gardens. 

Liam is growing so fast and changing everyday!  Thursday he made his first free handed steps to the couch.  He is problem solving and finding ways to maneuver things...and people so he can get where he wants.  To blow off steam he makes a loop in the living room with a pink chair as his guide.  He is learning a new 'face', he got tired of winking, so now he has an exaggerated blink.  On the trail he kept one hand out so he could wave at all the hikers we passed.  I only knew he had fallen asleep because people stopped saying hello.  He is gaining more babble words, when Sean is home the two of them can go on for what seems likes hours!  With me, he is quieter, we think because he has had so many experiences of being with me in groups of people, he has associated me with quiet.  He is still attempting to eat, frozen food, milk, or juice are his favorite.  I can't wait until next year when Liam may be more interested dying eggs, finding them, and more aware of what is happening around him.  

I am caught off guard in the moments I miss my mom so much and her vacancy is felt so acutely.  I have a beautiful hand made vile with ashes of my mom, she came to the Canyon with us this weekend.  In the moments I miss her the most, there she is helping me to remember to turn to Hope. She was there nudging me up the trail with her grandson on my back.  I am sad she won't get to hike Liam in the Canyon, and yet I know, she will be there every time he goes in.   Just like she was there with me as I picked out 'healthy' chocolate for Sean for his Easter basket and will be there next year for Liam's basket.  She will be with us next year as I get ready to teach Liam how to dye eggs and remembering all the ways she decorated eggs, there were so many I will have a hard time choosing what is first!  She is here every time I need encouragement reminding me that Easter, and Christ are all about Hope.  Through the stories we share about her, she lives on, what a gift.





Friday, April 7, 2017

A first birthday of sorts...





Today is Liam's 1st anniversary of his heart surgery.  In a way another birthday since they did have to stop his heart for a few moments.   Writing that almost stops my own heart.  What a wild year the last year has been!  Liam ended up having an appointment down at Phoenix Children's Hospital today with his gastroenterologist.  What a weird feeling driving up to the hospital knowing I would only be there for an hour and yet having a wave of apprehension wash over.  Thankfully that apprehension left as soon as it came and we were able to play.  I never thought of hospitals as fun, I still don't, and yet Liam and I have a different kind of time at the hospital where we end up playing and laughing.  Today, I needed the laughter and the snuggles just a little more.

The gastrroenterologist sent in a referral for Liam to receive an evaluation to find out if he is eligible for an intensive feeding therapy program.  This is not the first time I have received the recommendation to check in with this program.  The program is 6 weeks in Phoenix with Liam receiving support around eating everyday.  I don't know all the details but the thought of driving to Phoenix, or having our family split for 6 weeks has deterred me from really searching out if this is something that would be beneficial.  I think I have been hoping that Liam would miraculously start eating on his own.  I guess we are being given another option, the option of getting Liam the most beneficial help he can have, and we are willing.

To help ease the day, Liam and I traveled to Jerome to meet up with my dad, sister, and niece for a few hours.  We played in the park, watching kids go down the slide, climb bars, and run around.  I knew I wanted to get Liam in the swings so when the swings were open I jumped on the chance to play.  Liam had so much fun!   He is quite enamored with his cousin Aria!  I am so grateful he has the chance to get to know his cousins and learn so much from them!  What a gift to have this little being just a year ago, receive heart surgery to present day, playing on a swing, laughing!  He is our miracle!!

Monday, April 3, 2017

Wonder...


Spring in Arizona has always been a wild ride, higher temperatures, sun, rain, snow, sleet, hail, wind, I never knew what to expect when someone would let me know 'Spring' had arrived.  This weekend was no exception.  I had a workshop to attend to keep my massage license current so we decided to head north for the weekend and have a little get away.  We left Prescott with dark clouds and a threat of rain, we arrived in Flagstaff with an inch of snow and more to follow.

When we awoke on Saturday there was more snow to fall, a breeze, and the sun was trying to peek through the clouds.  By Saturday night the clouds were sparse and the temperature had risen enough for us to take a walk at Sunset Crater National Monument.  Sunset Crater has always held a soft spot in my heart, there are fond memories of exploring as a school child, with family and friends, and more recently on a couple of meditation retreats.  I have always allowed for the magic of the land to take me on some mystical journey!


What has come to fruition is that with Liam, life is unfolding in that same magic.  We are getting experience the wind for the first time through Liam's senses.  Touching rocks and trees, sharing in the wonder he is experiencing.  I know I was taught that having children would be a most wonderful journey especially learning through their senses.  I guess this was a lesson I had to experience on my own!  WHAT A BLAST!

Just in the weekend, Liam has reached out to feel lava rock for the first time.  He is starting to realize that there are different textures for different pine needles.  He has different reactions to different things as if he is discerning what he likes or dislikes, what brings him pleasure or not.  Today he met his shadow for the first time!  We had so much fun meeting this 'being' and enjoying his delight as he explored his movements and the mirror movements of this 'being'.


We are having so much fun witnessing Liam explore his movement.  He is getting faster with his crawling and more bold with his willingness to let go for a second.  He is almost running with his little walker, and yet when he wants to get somewhere 'fast' he drops to all fours and charges head first.  He has found the stairs and loves to climb up to the second floor to play in his room.  We are working on getting back down, that isn't as much fun, since he would love to face where he is going.  I am so grateful we get to savor these moments of wonder with Liam and truly absorb the joy they bring.

 There is a story that my mom and I were hiking when I was maybe 4 and I kept stopping to show her a flower or a lizard.  She said that the sun was sinking behind the trees but I was oblivious, I was more interested in the little things.  Our adventures ran this way through adulthood, I would want to go slow and savor little things, and she had a fantastic agenda to fulfill.  When I was 15 we went to Yellowstone to visit my sister, Ashea.  I woke up in a sour mood from a nap and didn't really want to go on a hike but the family was headed out and I do enjoy being outdoors.  So being the defiant 15 year old I was (I still am defiant just not as cute!) I lagged behind and let the others disappear on their fast pace hike.  My present was getting to witness a sunset that is burned in my memory as one of my favorites!  I asked my family if they watched the sunset and no one got to see it, I guess the angle I watched from was the perfect angle.  I keep this story as my guide, am I moving at a pace that will let me savor the moments, catch the gifts, and keep the wonder in our lives?  As we learn more about Liam and his pace, I have a feeling he is a sunset gift, he has come at the perfect time, and is making life that much more memorable!

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 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.