To Sean... an amazing husband and father!

I have been sitting with the awareness that Sean has been mentioned, and is in some of the pictures, he hasn't been celebrated though.  So this post is dedicated to love, to a husband's dedication to his family and to a little bit of what our family is made of.



I knew when Sean and I met 8 years ago that he was different, he was...IS a very special man.  There was a comfort I felt around him and in the same breath a deep discomfort for he was different, old tricks didn't work with him.  He didn't ask for my number and didn't seem to interested in pursuing anything, I don't blame him, at dinner, my secret was out, I was leaving the country for an undisclosed amount of time.  We did get to have another meeting about 2 months later and he did ask for my number and our story began.  One of the questions we discussed pretty early on was family, what were our thoughts.  Both of us were in the mindset of, 'Why not!?'  We didn't have strong desires to start a family right away but we were intrigued by the thought of having a family sometime.

We are one of the lucky couples who got to have some time to deepen our relationship together, to play, to get to know each other as husband and wife before the desire for a family snuck in.  When that desire came we knew we were 'ready', who is really ready??  When I was first pregnant in 2014 and told Sean, he ran, jumped, laughed, yelled, and was thrilled.  My heart couldn't swell any deeper with love for this man, in that moment I knew he would be an amazing father.  When we had the miscarriage just months later and he never left my side, except to go find red meat since the midwife told me to get as much iron as possible.  He let me lead the way only with a step so that if I needed strength he was beside me to help advocate and get the support we needed.  Again, our relationship deepened to another level of trust and strength.

The day and week after Liam was born when we went through the roller coaster of emotions there was always a sense of dedication Sean exuded.  Through his fears, concerns, and grief he was present and took on the roll of Liam's father with tenderness, love, and acceptance.   As a new mother, my heart melted knowing that unlike some fathers who need time to learn to love their children who are 'different', Sean fell head over heels for this little bundle of light and that love has only deepened.

Liam has entered a space of wanting 'Daddy', he will wake up from a nap signing 'Daddy', when we come home, he will sign 'Daddy', and will sign 'Daddy' right before bed if he didn't get a hug goodnight.  I laugh and joke that I have become boring, 'Daddy' is the excitement in his life right now.  Someone got worried when I joked about this, to me though, I couldn't be happier.  I couldn't be happier to know that our child knows that his 'Daddy' loves him and will comfort him if he gets hurt, will play with him and wear him out, will read to him, will feed him, will entertain him.  As we get ready for our next bundle of light to come, I have needed more support and once again Sean has stepped up to the challenge.  Our boys are the luckiest boys to have such an amazing father, and I am so grateful to get to be Sean's wife.  We have met life with smiles, reverence, dedication, and a lot of love and I do feel that our home embodies that truth.

Thank you Sean McLoughlin for being the wonder of a man you are and for sharing the love you carry in your heart with all of us.  May you always know the well of gratitude we carry for you.  I love you!

Amazing moments amongst the humdrum of daily living...

There is something about how my mind will shut down and not want to play in the realm of creativity when there doesn't feel like movement happening in my life.  Friends will ask, "How are you? What is new?" and my mind will go completely blank when all sorts of amazing moments have happened.  So as I logged in tonight and noticed that the last blog was on August 17, I had the same reaction, nothing is new, nothing is happening, etc.  Of course, that is a fib, there have been some amazing moments in our lives.  AND there hasn't been much movement in parts of our lives.
Happy Autumn!  Can you believe that we are at the end of October already?!?  The leaves are starting to fall and the nights are starting to dip into the 40s and upper 30s.  The farms north of town have had freezes already, and we threaten to have a fire here at the house.  We do have the heaters on at night.  The days have been pleasant Arizona days, up into the upper 70s and mid 80s, the sun is taking its time to rise and wake us and is rushing to set into nightfall, so we know we have had a shift in seasons.
Liam is 2!!  We had a sweet gathering for him at a local park where he was able to run from one person to the next and gather as many hugs as he could.  In the first 15 minutes of arriving at the park, he tried to step down a bit higher of a step than he realized and took a tumble, thank goodness he had a graceful fall and I was close enough to grab him so he only had a little scratch on his forehead.  We have entered the teetering toddlerhood for sure!  I am learning to act quick, do my best to stay neutral, and do Bowen moves as soon as I can, I think we are navigating pretty well.  The going question in the house is, "Are you alright?"

Liam is so loved and we are so grateful for everyone who is so willing to celebrate this little boy!  We were in a store recently and a woman came up and calling Liam the "Double blink Boy" neither Sean nor I recognized her so we had to chuckle our son is 'famous' in Prescott.  There are people who will come to just be with Liam when they are struggling and what an honor to know that just by being him, he is giving the gift of peace and joy to others.

Early September we went to California to celebrate Sean's birthday, our anniversary, and Liam's birthday.  Liam had so much fun in the ocean!  He needed some reassurance at first and then after a while he caught the rhythm of the waves and would charge the water and let the water chase him back to the beach.  What a delight!  He was exhausted at the end of the day and though I wish I could have let him sleep all night, I knew there was sand in all sorts of unwanted places so we had to put him in at the bath.  I think that was the quickest bath we have done he was so tired and unhappy to be woken up for such a deep slumber.

This month we had the opportunity to head north to Williams for a night and hike around Bill Williams.  Liam and I had Friday afternoon to go visit a couple of friends in the community.  Each time I head up there I feel a little bit more of my heart healing.  I miss my mom on those trips and I feel her presence even more too.  There is more space for memories to come back and so there feels like there is an ability to explore how life is today without her.  Liam had a blast at the library taking books off the shelf and finding all sorts of things to get into.  We also stopped by an art festival that was happening and visited with some artist friends.  Liam had the chance to try out $3500.00 wind chimes and we can boast, Liam has GREAT expensive taste!  He also charmed his way into playing with a couple of hats.  Liam loves hats!  He loves to let us know that someone has a hat, and then he likes to get the hat off its owner to maybe kidnap the hat for a walk, put the hat on near by person, or if the hat is very well worn, chew on the hat.  He isn't so excited to have the hat on himself, but the public doesn't know this about Liam, they think he when he is excited about their hat he must want to try it on, hence the charming.  He even received his very own cowboy hat for his birthday and his favorite place for the hat is on someone else's head.

We made our way up to the top of Bill Williams Mountain to soak in the falling leaves.  I am always taken back by the flood of memories the drive brings with it.  Memories of family hikes, staying in the cabin (when there was a cabin), picking Dad up after a shift, hikes with friends, the magic the mountain contained for a young child's imagination.  We stopped at the Clover trail pull out and walked down a ways.  I just can't get over the cellular magic I feel walking and exploring the mountain.  And what a gift to have the 3 (almost 4) of us experiencing the soothing nature of the trail.  On the way up we decided to give Liam a chance to 'hike'.  My heart was so happy knowing that my parents more than likely did the same thing with me.  Liam seems to have grabbed the love of nature both Sean and I hold and that is a wonderful feeling, I also know in the years to come he may like computers better and we will navigate that too.  For now, we bask in the moment that he seems to beam being out in nature.

We have a friend who has given me permission to celebrate Halloween more as a season than a one day event.  I guess I have always enjoyed Halloween but because there was so much pressure to make the one day special, I never really allowed myself to get into the spirit.  Now, there is so much fun to be had.  We were invited to a birthday party at the beginning of the month with the option to dress formal or in costume.  I have a trusty witches hat and black cape that was made for me in college so I went as a witch.  I found a cute lion outfit for Liam and that seemed to be a hit, especially because he does such a great roar.  The true costume desire was to have Liam be Popeye and Sean and I be characters to support Popeye.  Mom did such a great job with costumes when we were growing up, I don't think I could appreciate the time and dedication she put into making the costumes by hand... until now.  Liam's costume needed to be made, I couldn't justify buying a commercial costume that would maybe be worn twice.  The Popeye costume took a couple of weeks of hand sewing (I didn't have the confidence to machine sew this project) the pieces together.  The finished project was a hoot!
 We were able to dress up for a Halloween party the local Sharing Down Syndrome chapter had.  The party was a thank you to the community members who helped the older kids in Special Olympics and as a get together for Sharing Down Syndrome.  The family who hosted has a mini farm on their property so we were able to feed the animals, participate in carnival activities, and Liam's favorite, be with people.  People have asked why Popeye, well, Liam started making a face a couple of months ago and it reminded us of Popeye so we ran with the idea.  He knows what the 'Popeye face' is and will make it (for the most part) on demand.  Last year he was practicing a 'Scary face' and that is what gave the idea to darken his eyebrows and put him in a skeleton suit.  I figure this is the best inspiration around!

I am grateful for the chance to share all of these wonderful moments, they do help to remind me how fruitful our lives are.  The pieces that are at a standstill are around Liam and his eating, or lack of.  We have done everything we can, and now we have to wait some more to get help with Liam's feeding.  Insurance and DDD can't seem to agree who should be helping us with getting Liam into the feeding therapy at Phoenix Children's Hospital and the hospital hasn't returned my calls to find out what the cost would be to pay out of pocket.  Now with 12 weeks to go before Liam's little brother arrives, I am less invested in getting him into the 6 week therapy program.  We do have a meeting between the Physical Therapist, the Speech Therapist, and the DDD coordinator in a couple of weeks to discuss our next steps of action so there maybe a way to get Liam in before Baby brother arrives.  This has been such a huge lesson in patience, perseverance, and using my voice to advocate for what Liam deserves.  And what we are learning from the other parents is that this is just the beginning.  Thank goodness for all the support we have on this journey!

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!

  

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!