Changes, adventures, and awarenesses...

Time has slipped past again.  What a wild awareness of how priorities can be switched, rearranged, and completely forgotten.  The last couple of weeks, my evenings have been spent fighting Liam to go to sleep.  He has been getting 90% asleep and then waking himself up or getting uncomfortable somehow leading to his eyes popping open and we start the dance all over.  A thought came to me the other night, a friend once shared she had read or heard that a child starts to break away from a connected consciousness and starts to become sovereign around two.  Liam is turning two next month and I am curious if we are getting to witness this in action.  Plus, there is another heart beat in our home now, and change is brewing.  What a gift to have this little being remind me to ground, breathe, and relax, if I get wired, he feeds on that and we end up with pinches, tears, and a fussiness that is usually not present.  I laugh because each time I think I am getting a hang of this mommy thing, the rules change, and I am at square one again, thank goodness, I am always up for an adventure!

The last month has been an adventure in gathering information, collaborating with doctors and health care teams, passing information to coordinators, and taking time to allow for guidance to unfold.
There hasn't been much movement in getting Liam into the feeding therapy other than we have 3 letters of medical necessity that have been given to the DDD coordinator and we have requested his primary care provider to refer Liam back to the feeding evaluation.  Each time I think we are done with this feeding therapy, another door opens and in we go!

With this new little being, we are wanting to gather information about how this little one is doing.  I was confused with a blood test thinking that I was receiving a full panel of screens but in reality it was just for Down Syndrome.  As I wrote before, the fear of a child having Down Syndrome is minimal since we know the joy that Liam has brought us and we already have connections to support a child with Down Syndrome so this screen wasn't exactly what we thought.  And then there has been so much information about how Iceland has almost a 0% Down Syndrome population due to genetic testing and terminating positive pregnancies and my heart drops.  All the false positives that were terminated and all the joy that is not present in our world.  I also understand there are huge burdens for some children with Down Syndrome, and isn't that a possibility for any child?  Being at Phoenix Children's Hospital I met mothers with 'typical' children diagnosed with terminal cancer who had been there for months, other conditions for frequent visits for testing or follow ups, therapies to be rehabilitated or habilitated.  I guess what comes to me is that there are no guarantees.  And why would one diagnosis be singled out to be terminated?  A friend shared, the fear of difference, could be a reason, and that makes so much sense to me.  My desire for adventure puts me in situations to meet differences, to stay curious, open minded, and open hearted, but some do not have that same thirst.  So with all of this news, I am trying to stay curious, not take the decisions of others personally and to truly enjoy the absolute joy we have in our home!

Oh and the joy we are experiencing right now!  Liam is growing by leaps and bounds.  His personality is blossoming each day and what a personality!  He is letting us know his likes and dislikes with laughs, pinches, signs, snubbing his nose, and faces.  His walking is getting steadier, he is starting to navigate thresholds going down, he has about 20 signs that he uses to communicate and each day there seems to be another one added.  Going out to public places, Liam has yet to meet a stranger, he loves high fives, 'knuckle bumps', and waves to any one and EVERYONE, even if the gesture is not reciprocated.  We are excited to find out how he does having a baby brother in January.

This week also marks a new journey for me personally.  I have been part of ASIS Massage Education as a teacher and today I had the privilege of graduating my last class.  Being pregnant, wanting to experience Liam's joys everyday, and being present for Sean, I have chosen to step away from ASIS.  This is one of multiple ways that an external identity has been sluffed away so that there can be more space for an authenticity to be present of 'being' instead of 'doing'.  The last 20 years, I have identified myself with what I do, and I would much rather have an identity of 'being' instead of 'doing'.  And after writing that I have to giggle, I will still continue to 'do' massage through this pregnancy until my body lets me know I need to rest.  I feel so grateful for the experience of working with new massage therapists, guiding them through personal explorations and learning so much about myself in the process.  I am excited to put all that I have taught others into practice in my own daily practice.  And the adventures continue!

  

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.

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!