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!

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!!

A rough day...

This weekend has been a little rough for Liam and me.  Sean had the opportunity to attend a workshop to further his training so he has been gone since Thursday.  I have always been so grateful for the amazing father he is to Liam and when he is gone our little family feels his absence!  Liam woke up yesterday at 5am and was ready to play, that isn't so bad, but the 10:30pm feed the night before left me a little groggy.  This morning he woke up later which was nice but not having Sean has left us both a little edgy.
We started working with another feeding therapist, this therapist won't take no for an answer.  Well, Liam has changed his eating habits, now he almost seems to be acting out when he is in the highchair.  Before he would take some food in, sometimes spit some out, sometimes swallow, sometimes refuse, but for the most part he seemed to enjoy being in his chair.  This weekend has been a different story, he cried when I put him in his chair, he is spitting more out than swallowing, he is refusing more and I am tired so we are just not having a good mix.

I am so grateful a friend let me know that as a parent I would be critiqued and to make sure not to take the criticism personal, the lesson of the week!  Liam's eating has become a tender spot.  Are we doing enough, are we doing everything right, what are we missing, how can we support him more?  Again, thank goodness for friends who remind us, me, that what we are doing is perfect, he is his own person and will eat when he is ready, we are supporting him in more ways than we even know!
As I wrote in a recent post, our lives have become normalized and so I forget that some of what we are going through is not typical.  We have a child who has a whole other band he is dancing to.  He is developing in a way that has delays in areas and acceleration in others.  He is cruising the furniture, bear crawling, starting to communicate with sign language, knows what we ask of him, interacts with most every person he makes eye contact with.  But he doesn't eat a meal like another 17 month old, he is still crawling when his younger peers are walking, he wears size 12 month instead of 18 month.  Of course all of these are comparisons and I hold in my heart that each of us have a unique way of showing up in the world so what others do is obsolete.  As a parent, sometimes I doubt, and today I am grateful for the permission to just let that come and go.  I imagine most parents have a moment here and there (maybe when they are exhausted) when doubt creeps in and a heaviness tries to settle.

I am also so grateful that here is this little being who came into the world under high stress, 'low-tone', poked, prodded, helicoptered, hooked to machines, burned 3/4 of his intake calories just to stay alive, had a heart surgery, and has people manipulate his mouth, his limbs, and push his comfort zone just to smile at the people who make contact.  He spreads joy wherever he is, I am not aloud to arrive places when he isn't with me, his love is so pure, and he has an eagerness to explore his Grandma Chris would just adore!  I have met parent's who have children who will never speak, walk, or engage  and find so much to be grateful for in their children.  I guess that is the gift of parenthood, meeting our children where they are, making a safe environment for them to thrive, and push them just enough to expand their comfort zones.  The uncomfortable part for me is how my comfort zone continues to be expanded reaching further and further into the unknown.  Some days, like this weekend, I wish I could just rest for a moment and regroup.  Thank goodness I can tap into the eternal strength, rest gently, and receive support from meditation, friends, family, and Mama Nature.  Well, and sleep, that is what I will seek the most tonight.