Feeding therapy FINALLY!!

There is so much to catch up on and yet so little.  I have noticed that the last year has felt like an inward journey and so telling a story hasn’t felt like it would make sense.  I remember while traveling I would feel like I was living multiple lifetimes in just one day and then talking to a loved one ‘back home’ and they were sharing about the same journey that felt like they had been traveling for the past year.  I feel like I am living both of these at the same time.  The boys are growing exponentially and yet we are keeping appointments, working a little bit, playing at parks, and any other ‘everyday stuff’.  So if I put aside those ‘everyday’ ideas, Finn is turning over BOTH ways, he has 4 teeth (at 4 1/2 months!!!), he sits on his own with just a few wobbles, loves his toes, and is easy to smile.  Liam is running EVERYWHERE!  We have visited with the preschool he will transition into in August, and he has entered into an intensive feeding therapy at Phoenix Children’s Hospital.  Liam, Finn, and I are down in Phoenix 2-3 nights a week and Sean comes 1-2 nights a week because Liam has 1-3 appointments everyday Monday-Friday until July13.  We are staying at a Ronald McDonald House near the hospital, so we are living multiple lives in a single day sometimes.  

Our family has been working on finding ways to play together, with Sean’s work being out of town, during the week we cover the basics but don’t get to ‘play’.  Memorial weekend we found parks to play in, went for walks around Lynx Lake, and went to the Heritage Zoo.  Liam goes to the zoo quite often so we let him be the tour guide, his favorite stops were the playgrounds.  Mother’s Day is still a tender day for me.  Continuing to integrate my own journey into Motherhood with Liam and now Finn, and missing my mom, we headed north and spent the day at Bearizona celebrating a 24 hour old mountain goat and the cycle of life.  

In April we found out Liam had been approved after a year of gathering paperwork, trying to pay out of pocket, making phone calls, meeting with support coordinators, leaving messages for doctors to write letters of medical necessity, finding ways to continue what the feeding therapist suggested before she left town, the list goes on BUT what is important is that today Liam had his 4th feeding therapy session and second occupational therapy session.  The timing couldn’t be more perfect for Liam, he is hungry and ready to progress!  He has been given the okay to drop one tube feed per day this week!  Getting to witness Liam interact with other adults, and watching him make new friends reminds me to savor this time.  My little boy is growing up…FAST!

Finn has blown me away with his progression!  He continues to coo at us, the walls, and anything in his hands.  He turned over a few weeks ago and surprised both of us.  Now he is rolling over a couple of times, he hasn't figured out that rolling is a mode of transportation just yet.  He is starting to cut his 5th tooth so life has been a little harder.  Liam is an amazing big brother, he will get a blanket out for Finn and point for Finn to be on the floor.  Finn’s sitting abilities have strengthened having such an attentive brother.  Finn is a strong little brother since Liam can be a little forgetful and nibble on Finn’s toes and hand, bonk his head, and push him out of the way.  

I have been able to do a few massages and PSYCH-K sessions in the last couple of months, being able to pay attention to one task is such a luxury!  I have to laugh getting everything together to leave the house without the boys is almost harder than being with them the whole day.  We must look quite wild with all the bags, and accessories we carry around!  

As I pack up for the week, Mom’s presence is close encouraging and reminding me, ‘What an adventure this week will be!”  This week Mikki came down to help on Monday night so Tuesday we went swimming at my Aunt and Grandma’s condo and Wednesday Sean was able to join us for the Children’s Museum.  I am grateful for Mom and Dad’s lessons to find the adventure in any circumstance, though some circumstances were a bit more like a scary silly house!   Hopefully Liam and Finn can reap the benefits of these lessons and can enjoy this wild ride we are all on for the next few months.  

The translucent veil of life

Haha, so the truth comes out.  Having 2 children is A LOT more work than 1!  I haven't been able to get out of the rocking chair more than a few moments here and there between feeding Finn and cuddling Liam to sleep.  And with that rocking, I have not used my computer for more than business necessities... until now.  Tonight, the boys are asleep, Sean is asleep, and I am awake. I am caught up on the daily needs of the family and home with a little extra energy to put together our story.

Finn Rama McLoughlin arrived at 7:47pm on Tuesday, 1/16/2018.  He has a powerful birth story with a little bit of drama thrown in, like his brother.  I started to feel contractions about 12pm on the 16th, I had gone to a P.E.O. meeting and was trying to take notes but my mind was a little fuzzy.  As the meeting was wrapping up, I realized that I was having real contractions.  When I got home we started to time the contractions and got consistent times so called the midwife.  The house got busy about 2:30 with Liam's speech therapist doing therapy with Liam, the respite care provider coming on for her shift, and the midwife coming in to check me.  I was only about 3 centimeters dilated so the midwife left with instructions to call if there were any changes.  The speech therapist left quickly after the midwife came realizing I was trying to track their work in between contractions.  We made a plan with the respite care provider to care for Liam during labor and delivery and knowing that there was time between 3 and 10 centimeters we sent her to run any errands she may need before taking care of Liam.  About 3:30, a friend who we share vegetables with from the Whipstone Farm CSA came with our veggie share.  By that time, the contractions had started to get deeper and more frequent, I was needing to pause and couldn't find a good comfortable position.  Our friend and Sean talked me into calling the midwife back, even though she had just left.  By the time she got back about 5pm and checked me, I was 5 centimeters dilated.

It was show time, the rest of the time is one big blurry dance, I know internally what I was working with but have no recollection of time or what was happening in the house.  My world had shrunk to Sean supporting me in any of the many positions I took, connecting with Finn, connecting with my own breath, and connecting to the Mama Energy.  I don't think I understood the depth of the Mama Energy until I was connecting.  I don't know what else to call this deep well of support I felt.  I felt my mom, my grandmothers, the many women who have become mothers, and Mother Earth in this Energy.  I do remember asking for strength, for support, and sharing how frightened I was in this space and each time I would reach in, I would feel supported, loved, and encouraged.  Of course, the midwives and Sean were huge in keeping me comfortable and each of them encouraged me in just the right way.

When my water broke, something shifted.  Finn wasn't responding well to the pressure put on him.  He was having a slow return with his heart rate as I would push.  Once again the ambulance was called.  I was asked to get into a position where my head was low and my butt high, this would help take some pressure off Finn and maybe slow the urges to push.  I have had to take some time to allow the humor to come through for the rest of the story.  In the moment there can be so much fear and concern, after some time the silly pieces come out and joy can seep in to form a great story.  I have lost what little modesty I had that night for when the firemen and paramedics came, they found me on the bed with my head down and my blue moon high in the sky!  Thank goodness they are all professional!  Our home does not have the greatest set up for a gurney so I was asked if I could walk to the gurney outside.  This is when it dawned on me, I was going to be riding in an ambulance with my backside high all the way to the hospital!  I needed a sheet, any sheet.  So off I went with 6 adults and our unborn child in the back of an ambulance with a red sheet 'hiding' my bare backside.  At the hospital with vacuum assistance and 2 pushes, Finn arrived healthy, weighing 9 pounds 2 oz, and measuring 21 3/4 inches long.  He had the cord wrapped around his neck hence the distress during pushes.  Everything happened so fast Sean wasn't brought in from the prep area so he missed Finn's entrance but he was right there to greet and soothe Finn as the nurses were checking him out.  One of the first things we got to experience with Finn is that he coos.  He has been cooing since the first time Sean held him.  When he was in the bassinet next to my hospital bed, he would be asleep cooing.  We call it his song, he has continued to sing since he has come home too.

I have been taught that if I trust, there is a rhyme and reason for things happening as they do.  This situation was no different.  The placenta was not releasing and so the doctor had to do a procedure to get the placenta out.  If we were at home for Finn and the placenta didn't release, we would have been in the same situation but Finn would have been on the outside needing to be transported and I would have been even more dazed.  The way the events happened, he was safe inside me, and we had the support we needed when we needed it.

While I was in the thick of my own experience there were so many wonderful people and events happening around.  Sean had called the respite care provider to come back early.  When things were getting intense for us in the bedroom, she took Liam for a drive to get him to sleep and get him fed.  Thank goodness they were gone when the paramedics were called.  Liam was able to sleep at home and be well taken care of over night.  The next day he had friends come love on him so he didn't have a huge chance to miss Sean and me.  He received big brother gifts including a treasure chest of costume items.  The friend who brought the veggies, she decided to stay in case we needed anything.  She practices energy/healing modalities and so I was able to ask for her help while in labor.  She happened to park down at the bottom of the hill and was the transport vehicle for one of the midwives and Sean since their vehicles were blocked in by the midwife who was monitoring me to the hospital.  I am forever grateful to each of these friends who bless our lives in so many ways.  We are so blessed!

Since Finn was born in the middle of flu season Liam had to wait to meet Finn until we got home.  The first thing Liam did was give Finn a kiss on the head.  We have had a few grabs at the arms, face, and legs and a nibble on a toe since, of course Finn shared his dismay.  The nibble of a toe was while the three of us were home alone cuddled on a chair, we learned how to do a group soothe in that moment.  We have shared with Liam to be nice to his baby brother because though Finn is younger he will be bigger than Liam in a short amount of time.  For the most part Liam shares kisses with Finn and seems to be concerned when Finn cries.  One of the greatest gifts for Liam has been that everybody has come to see him.  As friends and family have come to meet Finn, they have made sure to interact with Liam first and to ask Liam how he is.  Liam and I have even found ways to have cuddle time while Finn is asleep or being held by Sean or another friend.  I still have moments of mourning knowing that I my role as a mother of two has changed, and I also relish in the knowledge that Love has grown exponentially in our home!

With that Love, something really special is happening.  Liam is starting to be more interested in food on a consistent basis.  He still isn't taking in all that he needs to sustain himself so he still needs the feeding tube BUT the curiosity is brewing.  Sean has a theory that with all the feeding/eating happening around Finn maybe Liam is getting curious.  Plus, the great friends we have who took care of Liam while I was in the hospital fed him blue berries and black beans which he really enjoys!  Tonight he surprised us by taking bites of a slice of pizza!  The funny thing about this is that the pediatrician we go to had a story about his own son not eating and then one day taking a bite out of another family's pizza.  I am continuing to work with the insurance company and DDD to get Liam into the intensive feeding therapy.  Liam's eating gives me even more hope that he can transition to oral feeds completely.

In the internal journey of labor, I felt the presence of my mom and called out to her a few times.  The few days after Finn was born, I would catch a glimpse of my mom's hands feeding me, patting Finn, or stroking Liam's cheek.  Someone asked if I missed my mom, of course I do!  There are times I feel as though I miss her more now than I did 6 months ago.  I wish I could ask her about bringing Andrew home and how did she manage having us both? Or celebrating all of her beautiful grandchildren.  And yet, the reassurance I felt while in labor reminds me how close she really is, so I share with her all that I would if she were sitting next to me.  I may not get to hug her but I can feel her hug me and for now that can be enough.

To Endings and To Beginnings, how interwoven life really is...

Happy New Year!  I am amazed that today is the 11th day of the year already!  Life has been busy and doesn't seem to be getting any less busy.

Liam had an Ear Tube placement surgery early in December.  Thankfully this surgery was quick, and we were able to come home the same evening.  This was the 3rd December we handed our baby over to the medical community for some type of surgical procedure. I was hoping handing him over would get easier, it didn't.  Phoenix Children's Hospital did another great job though, of supporting Liam, his laughter was heard down the halls as we walked him to the OR, because the nurse was racing his bed through the corridors.  His left ear wasn't getting clear results so next month we will go back to do another type of test and recheck hearing in that ear.  Amazing what happens when someone can hear!  He is now trying out names, he is starting to sing songs, and we can no longer sneak in and out of doors if there is a squeak in the door.  His charm has strengthened another level by verbally telling people, "Hi" and "Bye-bye."  The feeding therapy we would like for him to participate in is still on the table DDD, and finally to their superiors for review.  We figure we will continue to do what we have done and encourage Liam to eat as he is willing.

Baby Mc's estimated arrival date is next week and so our life has altered a bit in preparation.  Earlier this week I had some 'false labor', so we have been in a bit of an emotional roller coaster as well as getting in with doctors for second opinions, and one last ultra-sound to make sure all is good.  This little baby is not so little, and is perfect.  I had an emotional day yesterday, I noticed there was this hanging cloud of fear over my head.  The concerns from the false labor helped to remind me of all that didn't happen for Liam's birth and all that did happen.   Plus with the anniversary of Mom's death tomorrow, I have been feeling her physical absence and grieving the fact that this little one won't get to receive her hugs.  What came up was instead of losing a child, since that fear was already brought to the surface when Liam was born, I had to delve into the fear of my own mortality, I was afraid I would die in childbirth.  Thank goodness for all the support that surrounds our family.  The nagging fear of death could be brought to the surface with compassion, gentleness, humor, and clarity.  The reminder of how precious each day is and how nothing is permanent was a saving grace.  Today a sense of peace, of trust, of faith seems to have returned.  As a friend pointed out, maybe my labor is more emotional than physical.  And as Sean reminds me each day, we have chosen to live in a way that brings us closer to that which we deem sacred, so this is no wonder, the lessons present in this manner.

We may have a baby tomorrow, and if so, I can celebrate.  I am willing to celebrate the duality of life, for isn't death transformation and isn't birth transformation?  And we may not have a baby for another week, and that is okay too, well, I may start complaining if I have to wait too long.  This little baby isn't so little and Liam is onto the fact that he can out run me right now.  What a wild and wonderful journey!

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!