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!