Tuesday, February 14, 2017

New meaning to February 14...

With Liam 24 hours old and in the NICU, there was a lot to digest and learn.  When we arrived on Tuesday afternoon, the hospitalist and attending nurse were checking out Liam's central lines.  He needed a platelet transfusion, that is what won his helicopter ride down to Phoenix Children's Hospital.  The best way to get blood in and out of his system was to put central lines through his umbilical cord.  So the first image we have of Liam that day was this little belly with white and black paste over the area of a belly button.  He had monitor leads for his respiration, heart beat, temperature, the whole shebang!  Sean and I learned quickly how to hold Liam through the lines but I don't think either of us got used to the constant bing of some monitor coming loose or us moving too quickly.

Something alerted the doctors that there might be something going on with his heart so with in hours of us arriving, a tech was checking his heart.  Thinking back there must have been an O2 read that was low, I did hear only one doctor thought they heard a murmur.  Of course the tech couldn't share what she was learning about our son, but the wait to meet a doctor felt like a life time.  The next morning when the medical team was doing their rounds the lead doctor let us know that a cardiologist would be meeting with us once they were done.
Being in the hospital was one thing, being in a NICU was another, I couldn't seem to catch up to all the information coming at us nor could I gauge how 'bad' things were.  The nurses were all so thoughtful and pleasant but they made sure to stay away from sharing too much about Liam other than his immediate care.  I have to admit, there were only a couple of people in my past who had Down Syndrome, one was a young man in Williams who attended school and another was a young man I taught how to ski at the Special Olympics.  I never knew that 50% of kids diagnosed with Down Syndrome have a heart condition.  Almost 75% have a thyroid issue, some have eye concerns, some have ear concerns, there are so many ways the extra chromosome can play out.


Liam's heart had what the doctors call an AV Canal.  His left and right atriums were open to each other, there was a flap of skin that helped keep the left and right ventricles separate when his heart beat but there was some oxygenated and deoxygenated blood mixing.  He also only had one valve that separated the atriums and the ventricles instead of two valves.  The heart surgery he had in April 'fixed' these anomalies (I put 'fix' in parenthesis because to me Liam's heart didn't need fixed,  it just needed support).  He now has a 4 chamber heart with 2 valves and what we call an upside down heart beat (due to the way his system compensated before surgery).  His cardiologist is pleased and excited with Liam's heart and his healing.  February 14th is congenital heart defect awareness day so today we celebrate more than just love, we celebrate Liam's heart, we celebrate the effort and persistence that Liam had to pump blood, grow, and live for 7 months with a heart that needed just a little bit of support.  The condition Liam has is one of the most common cases that show up for kids with Down Syndrome and seems to be an easier 'fix'.   Today I celebrate the love I share with Sean, and we celebrate the heart and soul our son has to live!



Sunday, February 12, 2017

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.







Saturday, February 11, 2017

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!   

Friday, February 10, 2017

Friends...

There has been a great need for friends the last few weeks.  Something I regret to share... I take for granted sometimes.  I forget that there are people out there who have known me from toddlerhood, teens, twenties, and just in the last few years who share their love.  



Friends are the much needed extra arms to love on Liam.  The minute we arrive, Liam is cuddled into these arms and adored while I take a moment to rest my arms and savor his smile.  We were adorned before Liam was even born with baby showers and gifts that today we are still using.  They showed up at the hospital moments after we became a family and have stayed by our sides, celebrating Liam's achievements, encouraging him to eat, sitting with us while he has had his procedures, and encouraging us as we learn new ways to support Liam or when we need a boost.  Friends got together when Liam was in the NICU and gifted us with financial help.  We didn't know at that time what our medical expenses would be.  They thought about that for us and supported us through that process.  

I had a phone conversation with one friend just last week and in that period of time, a tightness in my heart seemed to ease and the turmoil I was putting myself through calmed.  This friend witnessed, assured, and gave a gentle suggestion, what a gift!  Even today I was able to hike with another friend, we witnessed deer grazing near the trail, we shared vulnerable experiences, we celebrated each others' successes, and laughed at the wonderful silly things we were thinking.  There is something about the sharing of experiences, time, space, and presence that can stop any destructive thought patterns.
Friends have helped to normalize our life.  They have helped by putting teas, herbs, foods, and blankets together for us.  They have taken Liam for a few hours so Sean and I can have a date, they have checked Liam's different wounds when I questioned how his healing was coming along, they encouraged my healing skills to support Liam, they helped research natural healing remedies so Liam could stay out of Doctor offices when the flu was running rampant.  I can't imagine Sean and I raising this amazing being without all the wonderful people who have stepped in to be part of this journey.    As a friend shared today, our life might be normalized but there is nothing normal about our situation.  She is right, we are extraordinarily blessed by friends and family.

Tuesday, January 31, 2017

The Wind, and the refuge of the Earth...

“When we touch the Earth, we take refuge in it. We receive its solid and inclusive energy. The Earth embraces us and helps us transform our ignorance, suffering, and despair. Wherever we are, we can bow down to receive its energy of stability and fearlessness.” ~ Thich Nhat Hanh

I have been mulling over what to write about, I guess 'writer's block'.  What came today was this idea that sometimes I can get wrapped up in the Wind.  The Wind of the news, work, my thoughts, Liam's appointments, worry, etc.  I never knew how much the wind bothered me until I was running one evening and I felt so beaten, I couldn't place why this feeling of defeat permeated my whole being.  I had been running in the wind!  The wind seemed to suck the essence out of me, but why?  What I realized is that I braced myself against the wind, I would push back into the wind...umm, the wind wins!  I did some PSYCH-K balances, and now I allow for the wind to rush around me, I don't have to fight it anymore.  Today, I actually welcome the wind, there is a healing in the power of the wind, it blows stagnant air out, it spreads seeds, it helps birds migrate, electricity generated, there is a creative energy in the wind. 
Back to the Wind, if I am left to this whirl of information, appointments, thoughts, I again start to feel beaten up.  When I remember to take a moment and connect to the Earth I am reminded that even this Wind can be used for creativity.  There are people finding their voices, making signs, investigating what is of value to them, reaching out to their communities, defending their beliefs, all in this powerful Wind.  Even though I welcome the wind, I don't always feel comfortable, my hair gets whipped, my clothes get tugged, dirt gets in my eyes, so please don't get me wrong, I am not always comfortable in the creative energy of the wind.  To help soothe I connect with the Earth, I can soak in inclusion, stability, hope, and fearlessness.  The Earth is a lot older than I am and has many stories yet to share, as I lean into my parents' strength and experience I can lean into the Earth and the expansive, creative energy she holds.  I am grateful for the warm embrace that is ever present and just waiting to be experienced every time I leave my front door and touch the Earth!  



  

Monday, January 23, 2017

Into the healing...

I joke with people that when I came to Prescott, I came to help the people of Prescott heal.  What has happened the last 13 years has been that Prescott has healed me.
The healing that has happened here for me has been on all the different realms, physical, emotional, and spiritual.  The healers and teachers I have met and the healing modalities learned have been life changing.  The land around Prescott is soothing to my soul.  The community has given space to surrender has helped me to return to an intimate relationship with the Sacred.  When we found out that Liam would need extra support I knew that we would be okay because of all the experiences of healing that have taken place here.
I have learned to be patient with healing, something that may have been earlier 'healed' may present again.  This presentation isn't because that condition isn't healed, there may be a deeper healing that needs to take place.  This last week, I had this experience.  I met a man who does healing work and during the intake he asked, 'Have you ever been knocked unconscious?'  I love intake forms, there is so much information that can be gathered from them, and I also know that conversation can unearth even more!  Inevitably a person will forget a monumental event while filling out the form BUT in a conversation there will be an, 'Oh yeah! This one time...'
So, Oh yeah!  This one time when I was 5 I was at a Zuni festival and a bunch of kids were playing up on the pueblo roof, as I watched, my feet moved backwards and I walked backwards off the roof!  All I remember from my boots slipping off the roof is being carried back to the pueblo by one of the family members, I must have been knocked unconscious when I landed, thankfully on packed sand.  I didn't have any broken bones (though no x-rays were taken), I could breathe, walk, no bumps.  I do remember being uncomfortable riding back to our home but not much after that,  I was 'fine'.  I completely forget to put this on intake forms because it wasn't a car accident, I don't have any lasting scars, and I have been 'fine' since.
One of the first Bowenwork classes I took was in a Mind Body Bowen class, this work is geared to unravel trauma in the body.  While receiving from a practice buddy, I had this sensation of an air vent blowing cold air on my back from my tailbone to my head.  That part of my body was freezing, my partner put a blanket on me and I was still cold so we knew what was happening was an inside job.  Once again, this memory of walking off the roof came flooding back.
During this most recent healing session, I wanted so badly to go into a healing trance and surrender my body to the work.  I wanted to have healing visions and energetic unwindings.  What I received was being in my body, unwinding this seized memory, bringing life back into muscles that have kept me upright by shear determination and rigidity, feeling the pain of being hurt all those years back, the fear that the world is unsafe.  I have been running on a thought from a 5 year old, 'I would never be fully safe unless I knew exactly where I was, where I was going, and who was around me.'  Finally I received the message I was safe and would be safe, I could relax into life.  As I write this, I am ready to brush this experience off, this isn't that exciting, and yet, this is the most profound unwinding I have participated in.  I feel as if that 5 year old Becky finally knows that the world is safe, she can relax, she can return to wholeness.
The experience of walking off the roof, having my body react the way it did, the process I have lived since then has all helped me to support others.  In sessions, clients are approached from this place of seeking safety, wanting them to feel safe, making sure they can relax into their bodies, relax into whatever healing work we are participating in.  I feel that I can embrace this lesson and let my body heal.  In these moments, I get excited, this is what I want to do when I grow up!  This is what I do as a grown up!
Adding Liam to the mix of all of this has been such a joy and challenge as well.  I love being able to play with him with all the healing modalities and know that he is receiving all this support.  What is so hard is that we have had to hand him over to surgeons 3 times now, we have put him in situations to feel pain.  Last night we were changing the gauze around his G-tube and the tape had stuck to his belly, so pulling the tape off made him cry.  How can we teach our child not to hurt people if we are hurting him on a regular basis!?!  I do have faith that we will be able to teach him, and maybe, just maybe this is part of his training for what he wants to do when he grows up, just like the need for safety was part of my training.


Saturday, January 14, 2017

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!