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!

  

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!

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!