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!

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!!

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!

Chores, memories, and more

Today was a day spent in rare form, pajamas, tea, fire in stove, and tackling chores.  Today consisted of going through files to get tax information collected, filling out insurance information on the computer, and filling out paperwork to get Liam into the system for continued support.
Going through 2016's receipts, appointments, and bills brought a flood of memories and sadness.  Going through my schedule for appointments with clients and finding eraser marks through what seemed to be random dates until I remembered.  I remembered January 5th getting the call that Mom wasn't doing so well, canceling appointments with clients so I could be with her and Dad at the hospital as they discussed hospice care options.  Mom dying on the 12th, January 16th Mom's memorial, and then trying to come back to the office and clients January 20th.  I can't fathom what was going through my head, if anything.


I think I was trying to fool myself into thinking that life was moving on in February, that I could handle the adventure of being Liam's mom, be a massage therapist, and a wife.  I also know that I made the decision to give my 60 day notice at the office, thank goodness for intuition, after entering all the yearly data, the office rent was more than I made the first 3 months of the year.  Then March 11th, a note about meeting with the Heart Surgeon for Liam's surgery.  March 19, the office was cleaned and ready to be turned over to a new tenant.  My career as a massage therapist radically changed.

And the year continued, bills were still being paid from Liam's birth in 2015.  Though, I did not have a choice how Liam was to enter the world, the hospital and insurance company did not deem Liam's birth an emergency so we got a full medical bill.  Thank goodness for our families, most of all the medical bills were taken care of so we didn't have to carry the full burden of Liam's birth, heart surgery, and other procedures.  Some clients here and there willing to be flexible with my time, willing to have me come to their homes to do the massages.  Doctor's appointments here in Prescott and down in Phoenix running every 3-4 months.
Sometime in October, I lost the part of me that ran the checks and balances of running a practice.  I had to hunt to find when deposits were made and for what amounts.  In the 14 years of having a business, I always had records of what I spent, where, when, etc at my fingertips.  This year, I had to hunt a little deeper, spend a little more time on the computer in bank statements, seeming to add salt to the wound of 2016.  Thank goodness for Sean, he took Liam duty so my attention could be spent on this tedious task!
When Liam was born we were told to check into Social Security Supplemental Insurance for Liam.  Since he received the diagnosis of Trisomy 21, there were programs to help with his needs.  He had already been signed up for a NICU program to see a nurse in our home, an Early Intervention Program, but this seemed to be something that could help in other ways.  So with our 2 week old son, we went down to SSA, sat in the waiting area for what felt like an eternity, finally got to meet with someone, and were denied because we made too much money.  We walked out with a weird sense of defeat that we couldn't get Liam what we thought he might need and yet relief that we were doing okay financially as a family, we didn't need the assistance.  We let SSA and SSI go to the side and figured with our insurance we could take care of Liam's needs.  Recently there has been a new influx of inquire of why we didn't have more governmental support for Liam, so I thought I would check in about getting him more.
We spent once more what seemed to be an eternity at DES to find out we were denied because of what our family makes, and again, we walked out with the mix of defeat and relief.  This time there is a little more defeat for me, Liam needs more support than what is given by the EIP and our insurance as a family is in flux.  The Department of Developmental Disabilities has a program that Liam may qualify for so I have just sent that paperwork in today.  Filling out the paperwork brought a wave of grief.  The grief is in knowing that at 17 months, Liam 'should' be walking, feeding himself, talking more, and he isn't.  He isn't able to take care of himself like a 17 month old 'should'.  I do know he is perfectly Liam, standing at the couch with a grin from ear to ear, crawling and singing as we chase him, climbing the stairs with a sense of purpose, babbling sweet nothings to us then squeezing his cheeks up, and teasing us with those precious moments he puts food in his mouth and that morsel travels down to his stomach instead of being immediately spit out.  I savor knowing that I get to cuddle my 'baby' and take him to work with me because he isn't running around and into everything, though he is getting into a lot more!

I have been taught that grief is layered and at each layer there is a new space that requires a visit.  I am learning to lean into the grief rather than run from it.  I have learned that grief is part of loving, and that the more one allows one self to grieve, the greater they can love.  The feeling of grief still feels overwhelming and yet, as I write this in my pajamas, I have hope that love will continue to unfold and reach deeper realms.

Eating, Feeding, Nurturing... Oh my!

Getting Liam's body nurtured has been a challenge since birth, if not even before then.  When I went in at 35 weeks to have an ultrasound, the tech let me know he was about 5 pounds and was projected to be about 7 1/2 pounds, imagine my surprise when his weight was called out at birth, 5 lbs. 13 oz.  WHAT? Wait, what happened?
Then with him using up all his reserves and having the 'trauma' of his birth, he didn't have much energy to suckle and nurse.  The medical staff let us be for a moment and then they started shoving my nipple into his mouth as he whimpered and would pull back.  A nurse would grab my hand and push Liam's face deep into my breast, I wouldn't want to eat that way either!  The staff became concerned and wanted him to suck on a bottle, he would do the same thing, pull back and whimper.  So I am not surprised that this strong little being has decided eating isn't the most pleasant of activities!

When we got home we found a rhythm that worked for awhile, he would try to take in a certain amount of breast milk, then the rest would be formula and breast milk mixed in a bottle.  I was told how this wasn't the best idea, breast was best and I did try almost everything.  I couldn't find the right material to make a contraption to feed Liam with pumped milk through a tube taped to my breast.  Who knows, would that have helped?  One may never know.  I did pump until a month before Liam's first birthday, and I am proud if myself for persevering, proud of my body for pumping after not having Liam's stimulation for 6 months, and of my family for holding space for the process of 'feeding' Liam.
After Liam's first procedure he couldn't seem to latch on, he didn't have the energy anymore to even try like we had done months before.  We also found that he couldn't ingest more milk, he would tire quickly and so the doctors had us up the caloric level so that all he had to do was ingest 2 ounces at a time.  He was able to keep that up, and then the day came, he needed heart surgery, he was considered 'failure to survive'.

I had this fantasy when Liam woke up and took a few bottles that he would come back to nursing, to being able to take in the full amount he needed with out bulking up the formula to a higher calorie content.  He might even start eating soft foods.  But no, by the time we left the hospital he was refusing the bottle, he would eat only a little bit of soft foods, and he was giving the NG-tube, nasogastric tube, and we started the adventure of 'tube feeding'.  

I knew right away we needed support and so a speech therapist came to the house to help.  Her work with Liam was helpful, but he was still not interested in being fed orally.  I was informed that the tube down his throat could be irritating and maybe hindering his eating, I can only imagine the discomfort he endured.  I wasn't sure another surgery was the answer, so we all worked with Liam, coaxing him into taking a little bit of food, formula, water, something by mouth.  After 6 months, I realized things were getting worse and asked for an appointment with a surgeon.  In that time, I also was informed that a GI doctor could/should be helping us with this process and there was surprise that we didn't have a GI doctor so an appointment was made.  

Something that doesn't happen very often in our world, we had appointments back to back with the surgeon and GI doctor and we we needed to be in Phoenix all within 24 hours, what a treat to have only one trip and 3 goals met!  The doctors agreed that we needed to get the ng-tube out of Liam and for now a G-tube, gastrostomy tube, placement surgery was the best course of action.   On December 23rd we checked into the hospital and Liam went into surgery for the 3rd time since birth.  

He has a 'Mickey' button, and this seems to be working well.  We have more control of the balance between getting him hungry enough to eat but not so hungry he starts to withdrawal and get lethargic.  He still isn't sold on eating with his mouth BUT he is more interested and I imagine that has to do with his throat feeling better and his stomach not having something indigestible in it!  

With all of this feeding, eating, nurturing stuff, I have had the opportunity to challenge my own beliefs around food.  I have a feeling Liam may have picked up a trait from me, I would much rather have a tube and bag that fed me then trying to figure out what is best for my body and satisfying for my taste buds.  Food has never been a nurturing substance for me, I have eaten to stay alive, I haven't totally found the joy in eating.  When I was in Thailand I think I came the closest to really enjoying food.

So, now that I am working through my own nurturing 'baggage', my hope is that Liam can move beyond this limiting belief and find enjoyment, nurturing, health, and satisfaction in eating.  So far we are having progress and that is the best gift I can receive as a mother!

Liam Odin

So one of the reasons that my life has changed is Liam Odin came into this world and I get to be his mom.  Liam was born in September of 2015, so really my life has been a little wacky since 2014.  Liam is a complete joy to be around and has brought so much to my attention about so many different topics.  Here is a little insight into Liam's entry into this world.  
I was probably in labor for a while before I really realized I was in labor, but the tattle tale signs came the morning of September 13th.  I had enough mama stories and had read enough to know that there could be a wait before things really got interesting so Sean and I went to my favorite summertime Courthouse Square event, The Empty Bowl.  This event raises money for the Yavapai Food bank and combines two fun things for me, art and food.  The empty bowl is artwork, some functional, some not and then there is soup from multiple restaurants to fill the empty bowl.  Sean was a great sport and trusted that if I needed to go home I would let him know.  I was timing the contractions, they didn't feel to bad and I didn't want to miss this event, so I would go and walk when a contraction felt a little tighter.  
My mid-wife's assistant was in town and could meet me at the office to check out how I was doing.  She couldn't really get a clear indication so we all went our separate ways.  By the time I got home I knew I needed to just make sure I was well fed, well hydrated, and staying as present as possible.  About 7pm I knew things were shifting and called the mid-wife who suggested a hot bath and an early bedtime, I could do that, well, at least the bath.  By midnight the contractions were 2-3 minutes apart and I knew it was time to call for help.  The mid-wife's assistant came in, and went to find Baby's heart beat, every contraction his heartbeat would drop severely.  Everything that I had hoped for changed.  I got a ride in an ambulance to the nearest hospital, dealt with the staff's fears and judgments about my choices, was made the butt of a couple of jokes, rushed into emergency cesarean, my husband was given a misdiagnosis of our child's mental health, but at the sound of this sweet child's cry, all of the anxiety melted away. Liam Odin arrived and was now blessing our family with his tiny little being.

As I was being stitched back together, Sean got the news that Liam had 'soft signs' for having Down Syndrome.  Both Sean and I were in shock and yet there was a sense that if Liam had Down Syndrome then we would play with that, there wasn't a fear of the news.  The fear was in the misdiagnosis from the surgeon pre-op, Sean was told that our child probably had brain damage.  
That news was harder to take because as Liam's little body struggled to recover from the birthing process and acclimate to our world, we struggled with the thought of letting him die being poked and prodded or take him home to die, where we could love him back to the Earth.  

Each time a doctor came in to tell us something else was 'wrong' we would drop deeper into this struggle.  I think the only thing keeping us in the hospital was that I had just had surgery and couldn't move!  That night Liam was taken out of the room to a higher level of care, a nurse came in and gave me strength.  She gave me purpose and she gently cheered me on, this was the first time since Liam was born that I felt so supported by someone at the hospital.  The nurse woke me up every three hours to pump and would spend about the same amount of time tapping the little bit of milk into a syringe for Liam as I did pumping to produce it and each time she would tell me those drops of gold were going to help him get stronger.  What a gift to give to a scared new mom!
The next morning the doctor and nurse practitioner came in to let us know that Liam's health had surpassed what the hospital could handle.  He would need to be helicoptered to Phoenix.  Sean and I again revisited the thought, were we prolonging the inevitable having Liam be poked and prodded to his death?  Would taking him home now and letting him die in our home peacefully be better?  Sean and I went into where Liam was resting, unsure if we were saying 'good-bye' or 'see you soon'.  I prayed to be guided as to what to do.  When I put my finger next to his hand, he grabbed it and I knew.  I knew this little being was going to be around awhile and sending him to Phoenix was the best thing we could do.  
Sending him to Phoenix WAS the BEST thing we did!  Liam does not have brain damage, he does have Trisomy 21, a form of Down Syndrome, he needed a lot of TLC that first week of his life and thank goodness he was in the perfect place for his healing.  A heart condition was discovered, which made a lot of sense to why his heart rate would drop each contraction, why he was so small, and some of the 'mysterious symptoms' he kept having in Prescott.  

In that first week, Sean and I were invited to delve into the depths of our beliefs and explore any resistance we came up against, the many fears we had, and the ultimate question- "Did we believe that there was some greater Source that could give us strength to get through each day in the hospital and for the rest of our lives?"  Thank goodness for family members, friends, and mentors who walked us through that first week, there was a lot of anger, sadness, fear, exhaustion, and uncertainty.   Sean and I joke that we were baptized by fire into parenthood.  If we have more children we know we can handle the curve balls and the mysteries!