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!

Family!

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!