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!

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!