Owen's Play Place

It has been almost six months since I have posted a blog to this site.  I guess that is what happens when you don't have the star of the blog filling your days with fodder for topics.  At the end of August, we celebrated Owen's third birthday without him.  It was also Pete's birthday and we have a four year old who loves to celebrate all events with as much grandeur as possible.  This played out as a painful dynamic of acting joyful for Ellie as we made Pete his ice cream cake, enjoyed his birthday meal, and opened his presents, all while pushing back tears for the little boy who was missing from our table.  A lighthearted, but temporarily frightening moment, came at the end of the day when we lit Owen's annual lantern and sent it up to Heaven for him to enjoy.  On a day oppressive with humidity, Pete and I didn't think ahead about the science involved with these lanterns.  That night, Owen's lantern barely cleared the roof of our house and landed high in a tree in our backyard, its full container of wax still ablaze.  Thankfully, we did not burn down the neighborhood that evening. The next night we were able to get Owen's lantern all the way to Heaven for him, much to Ellie's relief.

Since August, we have been riding a fast approaching wave toward the anniversary of the day Owen died.  Each week brings a new memory of the terrible events that took place last Fall.  A year ago September, I completed a half marathon with Owen as my inspiration.  The triumph and accomplishment I felt that day are forever tarnished when I look at my medal- the race was held exactly one month prior to the day I said my last good-bye to Owen.  I had no idea what was looming so closely ahead as I competed in that race. Next came pneumonia, Owen's decision to stop eating, a referral to hospice, and the eventual realization that my baby boy was dying.  It has been almost a year, but my grief is still consuming.  Words could never express the pain involved in missing Owen.

And this is why I no longer write blog posts, it is just too painful.

Last Monday, Pete, Ellie, and I were invited to the Thom Pentucket Early Intervention office to participate in a dedication in honor of Owen.  For two years, we received services for Owen through this organization. Owen received physical therapy, occupational therapy, and our family all benefited from counseling.  Theresa, our family therapist, provided us with the language and support needed to help Ellie accept her terminally ill brother and grieve the loss of him last Fall. The goal of early intervention is to minimize the effects of medical and environmental risks.  They also work to help recognize and diagnose disabilities and developmental delays.  At age three, children enrolled in their programs graduate and move on to the public school system if needed.

Three times a week, Owen's dedicated therapists would come to our home, usually lugging supportive apparatuses and toys to engage Owen.  They worked hard to keep him comfortable, engaged, and provided me with options and resources to help position and include Owen in our daily life as he grew from an infant into a toddler, without gaining milestones. I feel tremendous gratitude toward this organization and Owen's therapists for the help they provided our family.  Theresa, Christine, and Lori became my friends and fell in love with Owen.  It was an easy decision for our family to ask that money be donated in Owen's honor to Thom Pentuckt Early Intervention instead of sending flowers to our family at his funeral.

The dedication we attended last Monday was for a room at their office.  What was once a therapy space/storage room for the miscellaneous mats and equipment needed to run this program, has now been transformed into a beautiful therapy room.  It was named, Owen's Play Place, and is now being utilized as a meeting spot for therapists and the children they help.  It provides new experiences, opportunities to be stimulated, and an engaging playground for children to explore.  For parents, it provides a space outside of the home for their child to safely learn and engage in a positive environment.  For our family, it is a wonderful tribute to our son.

The program was also able to purchase a walker to be loaned out to families for use.  We hear it is in high demand and we are thrilled to help provide such an important piece of equipment.  We were also able to donate Owen's wheelchair, stander, bath seat, and beanbag bed to the program, all of which are being used by other children.  As we approach the one year anniversary of Owen's death, it is wonderful to know the positive impact his short life is making on so many other families in our community.

Pete, Sommer, Theresa, Ellie, Christine, and Lori

Before

After

Before

After

Black-Eyed Susans in honor of Owen

Ellie trying out the ball pit

Rolling in a tunnel

Re-visiting Owen's bed

A Quarter of Life

Yesterday, Pete and I trudged through the six month anniversary of Owen passing away.  As I stepped on the treadmill around nine in the morning, my brain thought, 'this time six months ago my son had just died'.  My mind played that lovely game the entire day.

Six months is a long time to go without snuggling your little boy.  I dread the sixteenth of every month, but knowing I have now lived half a year without my guy seems so significant.  Owen was only with us for two short years, we have now lived a quarter of his life without him.  At the beginning of April, Pete and I celebrated our nine year wedding anniversary.  When I look at the pictures of our first year of marriage, we look like such babies.  It was an entire lifetime ago, yet it was only nine years. What will it feel like when we reach the nine year mark of living without Owen? Will I even be able to conjure up memories of him? Will I still be able to remember what he smelled like, how soft his skin was, or the flutter of his eyelashes on my cheek?

Time moving forward it is a good thing; the raw pain is slowly subsiding.  I can usually talk about Owen now without crying- something I was unable to do just two short months ago.  Time is also slowly stealing my boy away from me.  My memories become fuzzier, the pictures in my mind less sharp.  When I think of Owen, I have a mental montage of memories I sort through, but they are the same pictures over and over.  It is more difficult to recall specific details of Owen's life.  The same could be said for Ellie's babyhood, but I have her in the next room to to kiss on a whim.  Plus, I am creating new memories with her everyday.   Yesterday, a scene popped into my head about the time Owen and I went to Babies 'R Us with one of his therapists to pick out his new car seat.  It was such a funny experience with him.  A memory I had not thought of in a long time, but it made me smile.  What a particular little person he was.  If you would like to stroll down memory lane, I blogged about this experience here.

Life in the Marshall house continues to be one of questions.  We question why we bought a house two days after Owen passed away.  Our new home was picked specifically for Owen, it is beautiful, but it is Owen's house.  Why are we living here?  I frequently wish someone would have stepped in during that stressful time and stopped us.  Now we mull the 'do we move or do we stay' conversation daily.  Our cat, Vader, passed away last month. We made the decision to tell Ellie he moved to Arkansas to live with his cousin.  A letter arrived with a bus ticket and one Saturday morning while Ellie and I were at dance class, Pete brought Vader to the 'train station'.  Questionable parenting? Absolutely, but we just couldn't handle another Heaven conversation.

We are still awaiting the autopsy results on Owen's brain.  It has been six months, but we have heard nothing.  Odds are, we are not going to learn anything significant. The autopsy will mainly provide interesting information for Owen's neurologist, but we are still waiting.   It is a report about Owen, new news.  We are starved for information about our boy, so we eagerly await an autopsy report the same way other parents await a progress report about their thriving preschooler.

After spending six months exploring the options of foster adoption and sperm donation, we have made the decision that neither is the correct choice for our family right now.  Our feelings about whether we want another baby change frequently.  I struggle with whether I truly desire a new baby or I just want to recreate Owen because I miss him so much.  It is possible I will never really know the answer. If we add to our family, it will be the traditional way.  We have decided to play the genetic lottery and remain the biological parents of any future children.  We still have doubts about the genetic nature of Owen's disease.  We are not naive, we know our statistical chances of creating another Owen, but we also know we would be blessed to have another Owen in our family.  Our hopes will be for a healthy child, but we feel confident we would be amazing parents to whoever may be awaiting us in the future.

As the end of April approaches, Ellie will be celebrating turning four.  She is such a blessing in our family and we feel like such a strong team.  I never envisioned myself raising one child, but I must admit it provides for a wonderful lifestyle.  Ellie is a lucky little girl to have shared half her life with her baby brother.  She still talks about him daily, although the painful questions about why she can't join him in Heaven have ceased.  I pray she will always be able to carry him with her as she grows.

Six months.  It is still so fresh for us, but I know for others it will come as a surprise that Owen has been gone for six months.  Pete and I feel the shift, people no longer talk to us about him, ask us how we are doing.  In nine years, we will still be grieving the loss of our son.  It doesn't stop.  If you are a reader of this blog, then you most likely know a bit about Owen.  Take a minute to remember my sweet guy, if you have a memory of him,  share it with someone.  Talking about Owen can be difficult, but is far more upsetting to never speak about him at all.  To never relieve the memories of my sweet red-headed angel.

Easter 2013

5 Months

Today marks 5 months since I have kissed these sweet cheeks.  Each day seems to get harder instead of easier.

Last week we had a nice visit with our family therapist from Early Intervention.  We are so lucky to still have the people most important in the day-to-day care of Owen still checking in with us.  Losing Owen meant we also lost the routine of nurses, doctor appointments, and therapists that filled our weekdays.  Every now and then we are fortunate to see a familiar face. 

Monday's visit was to let us know how the money everyone donated to Pentucket Early Intervention program, in Owen's name, is being utilized.  Just over $3500 was donated when Owen passed away and the money is being used to spruce up a resource room at the center.  This room houses fun things like a ball pit, ceiling-hung swing, and an number of other adaptive toys that children within the program can experience.  It was in need of a facelift and Owen's money is being put toward making it a wonderful addition to the program.  It will soon be unveiled for use and called: Owen's Play Place.  Thank you to everyone who donated in his name- it means a lot to us and it will be wonderful for the Early Intervention community.  Here are a couple of picture of Owen visiting the room.  

Sharing Owen's Story

Pete and I had the opportunity to speak at a Grand Rounds forum at Tufts Medical Center in Boston yesterday afternoon.  I thought I would share my piece of the presentation.  The subject of the discussion was palliative care.  It was eye opening to see many physicians view palliative care nearly the same as hospice care.  Pete also spoke at a palliative care conference a week before Owen passed away last October.  We no longer have Owen in our arms care for, but we are still able to spread the word about our sweet mystery.  It felt good to talk about Owen and see some wonderfully familiar faces in the doctors that cared for our little guy.

Owen joined our family just sixteen short months after his big sister arrived.  Pete and I were firmly entrenched in babyhood and the plan was to lump the sleepless nights together with smooth sailing ahead after clearing the toddler years.  Owen’s pregnancy and birth were uneventful and on target – exactly what every parent and OBGyn could hope for.  Pete and I were actually nudging ourselves on our way out of the hospital because Owen was doing exactly what little babies should do: eat and then sleep.  I frequently describe his big sister, Ellie, as being born with her running shoes on. She is a girl on the go and has been from her first day.  Finally we got our ‘easy’ baby.

‘Easy’ lasted for exactly four days.  On day four, Owen started to cry.  He didn’t latch for nursing, he screamed when we tried to bottle feed him, he didn’t want to be shushed, rocked, or bounced.  All he did want to do was scream.  Day and night.   The next two months brought numerous trips to our pediatrician’s office.  We eventually settled on the labels dairy intolerance, reflux, and colic.  None of these words stopped Owen’s endless crying, but it gave us hope we would get our sweet guy back once he outgrew these complications.

At Owen’s two-month well-baby check up, his head measured a bit small.  Given his history, we were referred to the Neurology Department at Tufts Floating Hospital for Children- just as a precaution.  I will never forget our nurse practitioner trying to comfort me with the words,” This is just to be thorough, let them laugh you out of the neurology office.”  But I knew.  I already knew there was something bigger going on with Owen. 

My memory of our visit to Neurology is: Pete and I spent 10 minutes with Dr. Tauri describing Owen’s behaviors.  It seemed like a really short appointment, which in hindsight was foreshadowing of how sick our little boy was.  Dr. Tauri knew immediately that he wasn’t looking at a baby with a dairy allergy and reflux.  We were admitted to the hospital from that appointment and had two days of tests and consults with physicians to figure out what was happening to Owen. 

The diagnosis never came, but the prognosis held true.  What was initially believed to be Krabbe Leukodystrophy was not confirmed, but the portion where we were told Owen had a life limiting disease was correct.  Owen passed away in October 2013 after two years and two months with our family.  At the end of our initial hospital stay, we were introduced to Dr. Fauman, who would work with us to make decisions based on comfort for Owen.

Palliative care- a term that Pete and I were initially blissfully ignorant of its meaning.  Yet, it became a point of reference for us in the journey we were on with Owen.  Pete and I quickly made the united decision that our goal for Owen was going to be comfort and quality of life over quantity of life.  We wanted him home with us.  We wanted him free of tubes and wires. We wanted him to be as comfortable as we could make him.  We wanted time to build some memories for our family.

We embraced this lifestyle with Owen fully.  We stopped worrying about calories, milestones, and schedules.  We started focusing on what worked to keep Owen calm.  In the months following Owen’s hospital stay, we tried many different combinations of medications.  Eventually we stumbled on Methadone.   There was a scientific reason behind this drug choice, but it didn’t matter to Pete and me.  Only parents who are 100% focused on providing comfort to their child would allow their 4-month-old son to be placed on Methadone.  And it worked.

By embracing palliative care, we were able to make decisions for our son that provided him with quality of life.  Owen’s crying stopped, he started to smile, we could tickle his belly and he would laugh.  It was amazing.  Ellie got to know her little brother.  He had a personality and he became a member of our family.  Pete and I were able to bond with our son.  When you have an infant who cries endlessly, cannot be comforted, and doesn’t sleep, it is difficult to bond.  We loved him and we felt sorry for him, but in those first few months, Pete and I operated in survival mode.  Methadone leveled Owen out and allowed us to meet our little boy for the first time. 

Our journey with Owen never got easy.  He didn’t sleep well. Owen had a severe seizure disorder that was never controlled successfully by medication.  His neuro-irritablity was intense.  Owen had low muscle tone, he had cortical vision impairment, and high tensor tone.  Holding on to him or placing him in specialized seating required teams of therapists to figure out.  Owen was a glass half empty kind of guy, but he was adorable.  Curly red hair, bright blue eyes, and a set of dimples.   Easily the crabbiest kid of the block, but everyone who met him fell in love. 

We kept our goals for Owen in place as much as we could.  He vacationed with us for three summer’s at the beach in Maine, he went to Santa’s Village, he tried bouncy houses, spent Halloween in Oklahoma trick or treating with friends, and a vegetable never crossed his lips.  Only cake frosting and melted ice cream for my guy.  An exclusive diet of Elecare formula leaves something to be desired.

Our goal of quality over quantity in Owen’s life set us free.  We maximized every experience we could.  We focused to reaching the senses we could with Owen.  His seizures eventually stole his smile from us and he was non-verbal, but he would let us know when he liked something.  Owen would relax into Pete and my arms in a way that let us know he knew exactly who was holding and loving him.  He had a way of interacting with his sister that let us know he understood shenanigans were required when it was just the two of them. 

Pete and I are here today because we have lived the life of a terminally ill child.  We have made tremendously difficult decisions about our son’s life, but we never had to do it alone.  We had an amazing team of doctors at this hospital that provided us with every option, but allowed us to make the decisions we felt were correct for Owen. 

Dr. Fauman wore many hats with our family: physician, problem solver, counselor, and friend. She was able to relate to where Pete and I were mentally and emotionally because she has experienced the anticipatory grief parents go through as they love and care for child who is dying.  She loves the analogy of the forest and the trees and it is such a fitting use of words when discussing palliative care.  As a parent entrenched in the day- to day care of your sick child, it is sometimes difficult to keep your perspective on the overall goals you have chosen.  Part of Dr. Fauman’s job, the job of any doctor assisting with palliative care decisions, is to help parents and patients understand the big picture.

In October 2013, Owen was failing.  He was endlessly sick; he was sleeping most of the day and night.  He was very thin and struggling to breathe.  Owen was now receiving his medications through a g-tube and also receiving extra nutrition through a pump over night.  We were still bottle-feeding him as much as possible.  This was part of our goals of care for Owen.  We understood his severe aspiration risk, but we enjoyed the time feeding him and he enjoyed his bottles.  It was about the quality of the experience not calories.   One night I mentioned to Karen that Owen hadn’t taken a bottle by mouth from us in over a week.  We were feeding him through his pump at night to get food into him.  It was Karen, our palliative care doctor, who provided Pete and I with our forest moment.  We were so focused on one little tree, feeding Owen, that we missed the big picture.  Owen was trying to let us know he was dying, but we were missing the message. 

We stopped the overnight feeds and waited for Owen to wake up and demand a bottle.  He never did and a week later he passed away in our home surrounded by the family who loved him in the comfy bed we had purchased specifically for him.  Comfort over quantity, home over hospital, living a true life over an artificial one of tubes, wires and pumps.  We were tremendously blessed to be empowered to make these decisions for Owen.  

Planes, Trains, and Angel Wings

A week ago Saturday, the all-seeing meteorologists of the the Boston metro area made what I will call an "oopsie".  They missed a snow storm that dumped 7 inches of snow on our doorstep in the middle of the afternoon.  Normally, I pay zero attention to the weather report (as my mother-in-law can attest), but since Ellie and I were flying to Oklahoma that day, I knew the forecast was calm and clear.  Maybe snow during the overnight.  Normally, this unexpected event would have really stressed me out, but I have learned to mentally prepare myself for disappointment (seems logical when you review the last two years of my life), and so off to the airport we traveled.

Our itinerary required a stop at Dulles International Airport in Washington, D.C. with a two hour layover.  Plenty of time for Ellie and I to deplane, grab dinner, and mosey to our gate.  Unfortunately, our flight out of Logan International Airport was delayed a half hour because the plane was late arriving for Phoenix.  No problem, thought the mentally prepared Sommer.  This is an adventure!  My attitude started to show its weakness as we sat on the tarmac for two hours at Logan.  Ellie gobbled through her bag of snacks in record time, coloring books were utilized, Barbies were played, and even the Ipad was eventually rejected.  Why the delay? Well, those meteorologists forgot to mention the snow storm, so the airport didn't schedule extra de-icing crews, so flights were running a bit behind.  Oh, and then during de-icing the crew accidentally got the fluid into the electrical panel and the plane shut down...for twenty minutes.  By the time our flight was airborne, I had mentally prepared myself we were going to miss our connection in D.C. and it would be okay.  We would catch the next flight out.  Surely, there are oodles of flights leaving from D.C. on a Saturday evening for Oklahoma City, right?

An hour and a half later, Ellie was snoozing on my lap and our seatmate and I were strategizing whether we could make our next flight.  We had ten minutes to deplane, sprint the entirety of Terminal C, take a train to Terminal A, ride 4 escalators, two moving walkways (or treadmills if you are Ellie), and sprint to the far end of Terminal A.  All while lugging a purse, backpack, blue stroller bag towing a penguin, and a three and a half year old whose legs were "tired".  At some point during the flight from Boston, I started getting the notion we could do it.  This of course is dangerous territory because when you put in the effort and don't make it, the disappointment is far greater.  As I dashed through Dulles with a preschooler hanging under my arm like a football, I wondered if I should just stop.  My emotions would be easier to handle if I just didn't put in the effort, and I felt pretty sure whether I ran or walked to our gate, we were not going to catch our connecting flight.  But I ran.  I really wish I was part of a reality show because I would love to see the vision I made running the race of my life with all my living and non-living baggage in tow.  Footwear of choice? Some very cute boots.

As we made our final stampede down Terminal A to gate A1B, a woman in a white puffy coat with a fur collar hurried past us.  "A1B?" she shouted over her shoulder as she went by. "I will hold the plane for you," my fellow racer called as she disappeared out of sight.  We made the flight.  It had taxied away from the gate, but the plane was still sitting on the tarmac and they let us board via stairs.  As I walked my sweaty, disheveled, out of breath self down the narrow isle, Ellie scampered ahead of me exclaiming in delight, "We made it! We made it, Mommy!  We ran like we have never run before! That was fun!"  She cheered up the disgruntled passengers who thought we were slowing them down. My heart-rate had barely returned to baseline as we touched down in Oklahoma two hours later. I like to think Owen had a part in getting us on that plane.

All the effort earned us a wonderful visit with our dear friends, the Potters.  Jenny and Bj added their third son, Van Owen, in December and I was eager to meet my little guy's namesake.  Here he is:

Van Owen Potter

Our trip was just as I hoped it would be: fun and relaxing.  We had four children under the age of four and everyone got along great.  It was busy, loud, fun, and full of activities.  We ate out, we visited grandparents, Ellie played at a park in 60+ degree weather, Jenny and I had massages and girl talk, we celebrated George's second birthday, and I snuggled a delicious baby.

Van was a bit of a test for me.  I was curious how it would be to spend time with a newborn after the past two years with Owen.  Pete and I both still feel this underlying layer of exhaustion and we question whether we have the stamina to care for another baby.  This may sound a bit dramatic, but life with Owen was tiring and hard.  It was two years of endless care with no gains or milestones.  Emotionally traumatic, physically demanding, and now we are deep in a pool of grief.  I thought it was quite possible I would have very little tolerance of Van's newborn cries.  The good news is, this is not the case.  Van is not Owen and I was able to mentally separate the two.  I could look at Van with fresh eyes and not wonder what terrible diseases may be lurking inside waiting to be discovered.  His cries did not make me weary, but rather fulfilled me. I could calm him without needing to dispense medication.  Van is a newborn.  There is nothing else to add to his story.

Our flight home was also dramatic.  Yet another snowstorm hit the East Coast on the day before our departure.  Mid-air from Oklahoma City to Dulles, our connecting flight to Boston was cancelled.  A lovely surprise.  Ellie and I spent six hours in the airport before leaving D.C. at 11pm and arriving back in Boston just after midnight the next day.  It could have been worse, traveling with a three year old isn't terrible and we managed to keep ourselves entertained.  Here's to hoping our trip to Disney World at the end of February is less airport heavy!

Ellie

Today marks three months since Owen passed away.  It feels like an eternity has passed in those three short months.  Last night I went out to dinner with a dear friend who lost her husband to cancer two weeks prior to Owen.  It is a new life- living without my sweet boy.  Going out to dinner on a Wednesday night would have been unimaginable if Owen was still with us.  My time was spent with him, worrying about him, or at work.  There was no such thing as going out for a casual glass of wine mid-week.  Owen kept our days filled with all of the love and support he needed; now the free time abounds.  This is not meant as a complaint- I feel such a sense of relief going about my day with Ellie.  We have no strict schedule, there is nothing we need to rush to accomplish, no appointments with therapists, medicine schedules, unpredictable seizures, or endless irritability.  We just do what we want when we want.  I miss my guy, but there is relief to be found in this new way of life.

Ellie continues to amaze us with her acceptance of Owen in Heaven.  She talks about him every day, speaks of his existence in Heaven in a matter of fact manner, and comforts me when she can see I am sad.  Our family therapist stopped by last week to check in on how Ellie and I are doing.  Ellie questioned whether she had any children in Heaven.  Upon hearing she did not, Ellie let the therapist know she has a brother in Heaven and it is okay if one of her children goes to Heaven.   They will be happy there.  It hurts my heart this is such piece of reality for my 3 year old child.  But I love the sense of pride Ellie has about her brother who is an angel.

On Monday, she had a tough time going to sleep and kept Pete and I in her room until past 10pm.  This is notably late for a kid who typically conks out at 8pm.  As we lay in bed talking, she interrogated each of us about Owen.  Why did he get a disease? Why did he go to Heaven? Was he born with his disease? Why didn't she get the disease? Does he play in Heaven? Why didn't he say good-bye to her? We did our best to answer her questions and help her mind find some peace, but I know she still struggles with why this happened to her brother.  On Tuesday, she came home from preschool with her usual pile of drawings, but our family photo was composed a bit different.  Owen is now up in Heaven.  The beauty and innocence of this picture took my breath away.  I wish I could see into her mind and know what she is thinking.

L to R: Ellie, Pete, two snowmen, Sommer.  Owen is next to the sun in Heaven

Today Pete and I have an appointment at a fertility clinic.  We are still in our information gathering stage.  If we were to chose this path to add a child, we want to know exactly what we would have to undertake.  We know it would involve IVF, but I really do not have a clear understanding of the process.  We also have an appointment scheduled with my OB to review the details of my pregnancy with Owen.  Pete and I think there were some markers in my pregnancy which indicated all was not well.  This, of course, comes with the hindsight of knowing Owen was very sick.  Nothing in the pregnancy could have foretold his story, but we wonder if there is usable information for a future pregnancy.  We are also still waiting for our home study to be scheduled for foster adoption.  Lots of balls up in the air, but we are not actively pursuing anything.  It is easy to share that my feelings about adding another child to our house can change daily.  Some days seem to be just right with the three of us, other times there is a large hole in our lives that we are waiting to fill. No matter what the future brings, we are so thankful to have Ellie.