Two years, two months, and a day have passed since I last held Owen. A million things have changed: a new house, a new baby, Ellie is in Kindergarten, my hair was long, and then short, and then long with bangs, blond and now brown. But one thing remains the same, I miss Owen.
In the days following his death, December 17, 2015 quickly became a benchmark in my mind's calendar. How will I feel when this day arrives, I would often wonder? The answer: I feel sad. I miss him and my time with him was too short. Today is the day where I have now lived longer without Owen than I did with him. In the blink of an eye, his life has been eclipsed. It feels as though his time here was fleeting and temporary.
The grief of losing a child is profound. It is something I carry with me at all times. Each memory I create with Ellie and Maisy, a piece of me wishes Owen were part of it as well. I think I will always feel this way- a huge portion of our family is missing. There is no filling that gap. My sadness is no longer simmering at the surface of my being; I can talk about Owen without crying. I have sorted my memories to bring up the wonderful and quell the sad and painful. I can still recall the sound of his voice, the softness of his curls, and the angles of his body. I have people in my life who miss him like I do. I have Ellie, who never misses an opportunity to include her brother in her conversations, her artwork, and even her Christmas wish list. Two years, two months, and a day later, Owen lives on in our family.
We are working hard to keep Owen in the forefront of our daily life. His stocking hangs next to his sisters' on our mantel. We share our memories of him in our house freely. We compare Maisy to him, just as we compared Owen to Ellie in babyhood. On a bigger scale, we helped create Owen's Play Place. Our latest venture in creating a lasting imprint of Owen's life in our world is through book donations at our local library.
This idea came to me last summer as I pondered how to celebrate Owen's fourth birthday at the end of August. We have always made a charitable donation to a large organization related to his medical journey. I was searching for something closer to home; something that would feel more inclusive to Ellie and Maisy. After a conversation with the children's librarian in our town, we established the Owen Marshall Memorial Fund. By donating in his name, the money will be used to purchase books for the library. Inside the book, a label will be placed saying the book was donated in the memory of Owen Marshall. Pretty awesome! I cannot wait until we discover our first book at the library with Owen's sticker!
Whether at Christmas, his birthday, or anytime it feels like something you would like to do, please consider donating to his fund. It is a simple way to keep Owen close to our hearts and also help out a local institution. Make checks payable to Georgetown Peabody Library and have a note saying it is for the memorial fund for Owen Marshall (child).
Cathy DeWitt
Children's Librarian
Georgetown Peabody Library
2 Maple Street
Georgetown, MA 01833
We miss our funny little red-head. If you are reading this blog, you most likely knew Owen- be sure to think about him often. Tell your favorite story about him to someone today. His time with us may have been short, but he has left us a lifetime of memories.
Thursday, December 17, 2015
Sunday, October 5, 2014
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.
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.
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| Pete, Sommer, Theresa, Ellie, Christine, and Lori |
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| Before |
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| After |
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| Before |
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| After |
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| Black-Eyed Susans in honor of Owen |
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| Ellie trying out the ball pit |
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| Rolling in a tunnel |
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| Re-visiting Owen's bed |
Thursday, April 17, 2014
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.
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.
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| Easter 2013 |
Sunday, March 16, 2014
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.
Thursday, March 6, 2014
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.
Monday, January 27, 2014
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:
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!
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 |
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!
Thursday, January 16, 2014
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.
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.
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 |
Thursday, December 26, 2013
When is it Enough?
Pete and I made a pact a few years ago, long before Ellie and Owen had joined our family, we would try hard to not over indulge our children. This rang particularly true around the Christmas season. We refer to it as the gluttony of Christmas- where present after present is opened without a second glance. Where the importance of the gift is lost under the sheer volume of presents. Our goal is to never have that scene played out in our own living room.
This year, as we shopped for Ellie, we kept our gift goals in mind: something you want, something you need, something to wear, something to read. We did pretty good and only fell about four gifts over this mantra. It took restraint for most of December and then a little bit of UPS luck in the days leading up to Christmas to regain the perspective we held strong all month.
On the Friday prior to Christmas, Pete and I had a moment of weakness as we watched our daughter respond to the siren call of the Disney princesses on TV. The Disney Princess Dream Castle, the gift Ellie had repeatedly and joyously proclaimed, "I want that for Christmas!" As we watched our daughter stare enraptured at the TV, Pete and I quietly agreed. Ellie deserved the Disney Princess Dream Castle. We deserved to give it to her. Our resolve was broken and the hunt for a $150 piece of plastic became the mission. We involved family members in the search and stalked UPS up until Christmas Eve awaiting the arrival of the revered castle. But it didn't arrive on time. And Ellie has never mentioned it. Her playroom is so fully stocked with great new toys she has forgotten all about the castle. When she opened her gifts on Christmas morning it took over two hours. Not because of the quantity, but because each one was so thrilling for her we had to open the gift and play with it briefly. This is what we want our Christmas mornings to be like. The Disney Princess Dream Castle arrived today, and we will return it without Ellie ever being the wiser.
Christmas is a tremendously difficult holiday to celebrate when one of your children is missing. Pete and I put intentional thought into how we wanted to include Owen in our holiday traditions. On Christmas Eve, Pete, Ellie, and I visited Owen's hospital to drop off a donation and give thanks. On Christmas day, Pete and I walked the beach holding Owen close to our hearts. That night, we released a lantern into the sky, all the way to Heaven, each taking a turn to say what we missed most about him. I am not able to express the grief Pete and I feel without Owen here. To say I miss him is like saying I enjoy eating brownies. Words will never be able to fully express the extent of my emotions.
A few weeks after Owen passed away, my brain started to shift into overdrive. Pete and I wanted to have our kids close together in age, hence Ellie and Owen were only 16 months apart. If Pete and I were going to add to our family, where would the age gap fall? Mental calculations became snippets of conversation which led to my days being consumed with trying to decide which path our family is supposed to take. Do we pursue adoption? Foster adoption or private? Do we pursue having another child, but eliminate one of us genetically? Do we eliminate me or Pete? If we eliminate Pete, do we gender select to ensure that Owen's disease wasn't x-linked inherited? How long does the adoption process take? How long does IVF take? Enough.
Why is it about gaining and adding? Our family of three is doing pretty well. Maybe I should be focusing more on the child I have instead of dreaming of the child I think I need. Ellie wanted the Disney Princess Dream Castle, but she didn't need it. She has enjoyed every gift she received. The Disney Princess Dream Castle is a reminder to me, a lesson I needed to revisit, that in life you don't get everything you want. Within that story, Ellie is the reminder that you can find joy in what you are given. There is no need to always be looking for more; be happy with what you have.
I am not one for resolutions, but I will be thrilled to say good-bye to 2013 and all of the bad news it has brought this year. My goal for 2014 is to focus on my amazing family of three. Will there be another child in our future? Maybe, but for now we need to enjoy we what have and not what we want. If Owen has taught me anything, it is life is fleeting. We spent two years making memories with our sweet guy and now it is time to make more memories with our amazing daughter.
This year, as we shopped for Ellie, we kept our gift goals in mind: something you want, something you need, something to wear, something to read. We did pretty good and only fell about four gifts over this mantra. It took restraint for most of December and then a little bit of UPS luck in the days leading up to Christmas to regain the perspective we held strong all month.
On the Friday prior to Christmas, Pete and I had a moment of weakness as we watched our daughter respond to the siren call of the Disney princesses on TV. The Disney Princess Dream Castle, the gift Ellie had repeatedly and joyously proclaimed, "I want that for Christmas!" As we watched our daughter stare enraptured at the TV, Pete and I quietly agreed. Ellie deserved the Disney Princess Dream Castle. We deserved to give it to her. Our resolve was broken and the hunt for a $150 piece of plastic became the mission. We involved family members in the search and stalked UPS up until Christmas Eve awaiting the arrival of the revered castle. But it didn't arrive on time. And Ellie has never mentioned it. Her playroom is so fully stocked with great new toys she has forgotten all about the castle. When she opened her gifts on Christmas morning it took over two hours. Not because of the quantity, but because each one was so thrilling for her we had to open the gift and play with it briefly. This is what we want our Christmas mornings to be like. The Disney Princess Dream Castle arrived today, and we will return it without Ellie ever being the wiser.
Christmas is a tremendously difficult holiday to celebrate when one of your children is missing. Pete and I put intentional thought into how we wanted to include Owen in our holiday traditions. On Christmas Eve, Pete, Ellie, and I visited Owen's hospital to drop off a donation and give thanks. On Christmas day, Pete and I walked the beach holding Owen close to our hearts. That night, we released a lantern into the sky, all the way to Heaven, each taking a turn to say what we missed most about him. I am not able to express the grief Pete and I feel without Owen here. To say I miss him is like saying I enjoy eating brownies. Words will never be able to fully express the extent of my emotions.
A few weeks after Owen passed away, my brain started to shift into overdrive. Pete and I wanted to have our kids close together in age, hence Ellie and Owen were only 16 months apart. If Pete and I were going to add to our family, where would the age gap fall? Mental calculations became snippets of conversation which led to my days being consumed with trying to decide which path our family is supposed to take. Do we pursue adoption? Foster adoption or private? Do we pursue having another child, but eliminate one of us genetically? Do we eliminate me or Pete? If we eliminate Pete, do we gender select to ensure that Owen's disease wasn't x-linked inherited? How long does the adoption process take? How long does IVF take? Enough.
Why is it about gaining and adding? Our family of three is doing pretty well. Maybe I should be focusing more on the child I have instead of dreaming of the child I think I need. Ellie wanted the Disney Princess Dream Castle, but she didn't need it. She has enjoyed every gift she received. The Disney Princess Dream Castle is a reminder to me, a lesson I needed to revisit, that in life you don't get everything you want. Within that story, Ellie is the reminder that you can find joy in what you are given. There is no need to always be looking for more; be happy with what you have.
I am not one for resolutions, but I will be thrilled to say good-bye to 2013 and all of the bad news it has brought this year. My goal for 2014 is to focus on my amazing family of three. Will there be another child in our future? Maybe, but for now we need to enjoy we what have and not what we want. If Owen has taught me anything, it is life is fleeting. We spent two years making memories with our sweet guy and now it is time to make more memories with our amazing daughter.
Thursday, December 5, 2013
A Castle on a Cloud
About a year and a half ago I imposed the 'happiness' rule for myself. The basis of this rule is as follows: idle time will be filled only with happy topics. Gone were TV shows like Dexter and Breaking Bad and replaced were shows like Big Bang Theory and Parks and Recreation. The same applies to the books I read at bedtime. As I searched the library for 'happy' stories I realized I had a whole series in my house I could re-read. The Harry Potter series is one of my favorites and evokes many happy memories of my college years as I would devour each book as it became available.
Having young children only affords me reading time before bed. This translates to averaging two pages each night, nodding off to sleep about one and a half pages into the story, and then needed to re-read at least one page from the previous night to remember what was happening in the story. At this pace, it will be a long time before I finish the series and need to look for another 'happy' book. Owen passed away as I was delving into book five, Harry Potter and the Order of the Phoenix.
At the end of book four, Harry witnesses the death of one of his classmates, Cedric Diggory. As expected, watching a peer die is a traumatic event. Harry feels isolated from his friends; it is hard to resume a carefree lifestyle after baring witness to such a tragic event. Owen has been gone for almost two months. Around me the world continues to move forward, but I remain consumed in the grief of missing my sweet baby boy.
I think about Owen frequently, I cry about Owen daily. I field questions from Ellie ranging from sweet stories about how she plans to go to Heaven and marry him, to asking when she is going to get a disease and go to Heaven. In our house, Owen is still very present. His cape hangs on the wall in Ellie's playroom (the room we had picked out to be his bedroom). Last night we put up our Christmas tree and it is adorned with many of his cherished ornaments, pictures, and hand and foot print from last year. His stocking is on our ottoman as I type this: do we hang it next to ours over the fireplace? Ellie averages two family drawings a day from preschool and Owen is always featured in them. He may not physically be present in our house, but he is still my little boy. He will always be a part of my life.
Watching Owen die, sitting next to him during his last few days on Hospice, having doctors explain what happens as the body slowly shuts down, changes your view on life. I find myself silently impatient when I hear people complaining about trivial things. My problems are no more important than the next person, but it is frustrating to see people focused on things that really do not matter. It is as though I am now viewing the world through a tinted lens, they are definitely not rose colored, but the view is different. When Harry returns to Hogwarts School of Witchcraft and Wizardry the next term, he is shocked by what he sees. After attending four previous years and riding in seemingly horseless carriages, he now can see the carriages are pulled by Threstals, animals invisible except to those who have witnessed death. I am experiencing my world differently now as well.
Pete and I had the opportunity recently to watch a production of Les Miserables. Our niece, Holly, was playing the role of Cosette and we were gifted tickets to watch her performance. She was outstanding. I have seen Les Mis at least five times and love the music and story. This was my first time watching it since Owen has died. Much like Harry, I was surprised by what I saw. Watching Fantine die, witnessing her anguish about her inability to help her child was heart wrenching. I could relate to her desperation. She sold her body to make money to help her child. There were no limits to her love for Cosette. I cried openly as she begged Jean Valjean to care for Cosette with her last breaths. I was shocked by how much this scene moved me. I have watched it passively numerous times, but for the first time I felt connected to Fantine and knew her feelings of helplessness.
As I collected myself, the play progressed and then Cosette was singing her solo, "A Castle on a Cloud". As I listened to the words, ones I have heard numerous times in the past, the tears returned:
I can clearly see Owen in his castle on a cloud. My sweet boy who struggled so much for two years, is now at peace in his castle. I can envision him clearly playing with the boys and girls, enjoying an endless room of his favorite toys. His pain is gone, crying is not allowed, he is happy and whole. It is everything a mother could wish for, except how I yearn for the castle to be here and not in Heaven.
The pain of missing Owen is consuming. I am shocked by it. After a two year journey with a chronically ill child, I naively assumed my anticipatory grief would ease the pain once he was actually gone. Pete and I both feel it continues to be more painful the further we move away from October 16th. The weight of his body is no longer fresh on my arms, the warmth of his delicious cheek is no longer present on my lips. It is becoming harder and harder to conjure the feelings of his physical presence which means the reality is here. Owen is gone.
Owen is where he should be, I do not wish for him to be back with our family. We miss him so much, but it is comforting to know he is not feeling any pain. Ellie continues to struggle with the concept of Heaven. She often looks to the sky and asks us questions of where it is located and why we cannot go and visit Owen. Above those clouds, there is a mysterious place she is desperate to explore; she misses her brother. Ellie often looks to see if Owen is poking his toes down at her and I pretend to look with her. It has become a bit of a game for us, but now my eyes search with a new purpose. Maybe someday I will catch of glimpse of Owen in his castle on a cloud.
Having young children only affords me reading time before bed. This translates to averaging two pages each night, nodding off to sleep about one and a half pages into the story, and then needed to re-read at least one page from the previous night to remember what was happening in the story. At this pace, it will be a long time before I finish the series and need to look for another 'happy' book. Owen passed away as I was delving into book five, Harry Potter and the Order of the Phoenix.
At the end of book four, Harry witnesses the death of one of his classmates, Cedric Diggory. As expected, watching a peer die is a traumatic event. Harry feels isolated from his friends; it is hard to resume a carefree lifestyle after baring witness to such a tragic event. Owen has been gone for almost two months. Around me the world continues to move forward, but I remain consumed in the grief of missing my sweet baby boy.
I think about Owen frequently, I cry about Owen daily. I field questions from Ellie ranging from sweet stories about how she plans to go to Heaven and marry him, to asking when she is going to get a disease and go to Heaven. In our house, Owen is still very present. His cape hangs on the wall in Ellie's playroom (the room we had picked out to be his bedroom). Last night we put up our Christmas tree and it is adorned with many of his cherished ornaments, pictures, and hand and foot print from last year. His stocking is on our ottoman as I type this: do we hang it next to ours over the fireplace? Ellie averages two family drawings a day from preschool and Owen is always featured in them. He may not physically be present in our house, but he is still my little boy. He will always be a part of my life.
Watching Owen die, sitting next to him during his last few days on Hospice, having doctors explain what happens as the body slowly shuts down, changes your view on life. I find myself silently impatient when I hear people complaining about trivial things. My problems are no more important than the next person, but it is frustrating to see people focused on things that really do not matter. It is as though I am now viewing the world through a tinted lens, they are definitely not rose colored, but the view is different. When Harry returns to Hogwarts School of Witchcraft and Wizardry the next term, he is shocked by what he sees. After attending four previous years and riding in seemingly horseless carriages, he now can see the carriages are pulled by Threstals, animals invisible except to those who have witnessed death. I am experiencing my world differently now as well.
Pete and I had the opportunity recently to watch a production of Les Miserables. Our niece, Holly, was playing the role of Cosette and we were gifted tickets to watch her performance. She was outstanding. I have seen Les Mis at least five times and love the music and story. This was my first time watching it since Owen has died. Much like Harry, I was surprised by what I saw. Watching Fantine die, witnessing her anguish about her inability to help her child was heart wrenching. I could relate to her desperation. She sold her body to make money to help her child. There were no limits to her love for Cosette. I cried openly as she begged Jean Valjean to care for Cosette with her last breaths. I was shocked by how much this scene moved me. I have watched it passively numerous times, but for the first time I felt connected to Fantine and knew her feelings of helplessness.
As I collected myself, the play progressed and then Cosette was singing her solo, "A Castle on a Cloud". As I listened to the words, ones I have heard numerous times in the past, the tears returned:
There is a castle on a cloud,
I like to go there in my sleep,
Aren't any floors for me to sweep,
Not in my castle on a cloud.
There is a room that's full of toys,
There are a hundred boys and girls,
Nobody shouts or talks too loud,
Not in my castle on a cloud.
There is a lady all in white,
Holds me and sings a lullaby,
She's nice to see and she's soft to touch,
She says "Cosette, I love you very much."
I know a place where no one's lost,
I know a place where no one cries,
Crying at all is not allowed,
Not in my castle on a cloud.
I like to go there in my sleep,
Aren't any floors for me to sweep,
Not in my castle on a cloud.
There is a room that's full of toys,
There are a hundred boys and girls,
Nobody shouts or talks too loud,
Not in my castle on a cloud.
There is a lady all in white,
Holds me and sings a lullaby,
She's nice to see and she's soft to touch,
She says "Cosette, I love you very much."
I know a place where no one's lost,
I know a place where no one cries,
Crying at all is not allowed,
Not in my castle on a cloud.
The pain of missing Owen is consuming. I am shocked by it. After a two year journey with a chronically ill child, I naively assumed my anticipatory grief would ease the pain once he was actually gone. Pete and I both feel it continues to be more painful the further we move away from October 16th. The weight of his body is no longer fresh on my arms, the warmth of his delicious cheek is no longer present on my lips. It is becoming harder and harder to conjure the feelings of his physical presence which means the reality is here. Owen is gone.
Owen is where he should be, I do not wish for him to be back with our family. We miss him so much, but it is comforting to know he is not feeling any pain. Ellie continues to struggle with the concept of Heaven. She often looks to the sky and asks us questions of where it is located and why we cannot go and visit Owen. Above those clouds, there is a mysterious place she is desperate to explore; she misses her brother. Ellie often looks to see if Owen is poking his toes down at her and I pretend to look with her. It has become a bit of a game for us, but now my eyes search with a new purpose. Maybe someday I will catch of glimpse of Owen in his castle on a cloud.
Monday, November 11, 2013
Wearing the Badge
I strongly believe that women who give birth naturally (i.e. without an epidural), deserve to wear a badge proclaiming this feat. I have delivered two children and can attest to the excruciating pain involved in the entire process. I have not earned a badge and that is perfectly fine by me- epidurals are amazing and I highly recommend them. I have tremendous respect for women who chose no epidural- it takes a lot of strength, determination, and effort.
I envision these badges to be unassuming, but something all women would be able to immediately recognize. I could pass by and dip my head with a slight smile in recognition of their hard work. Perhaps it would fuel conversations for those who have not yet experienced child birth. Fellow badge wears would be able to recognize each other immediately and know they share a common bond; a unique experience that not everyone is able to participate in.
Since Owen has passed away, I have come to realize I want to wear a badge. I am not sure what it should look like, but I want it to say things like, "I get it!", "Is there any way I can help you?", "You are amazing and doing the best you can", and "We may look like a typical family of three, but we are far from it". Without Owen, Pete and I have worked very hard to stay busy. We fill our free time with projects and activities because idle time allows for the grief to sneak in. It is with us all of the time, but if we remain busy we feel like we are tricking ourselves into moving forward.
A few weeks ago, we took Ellie to the Franklin Park Zoo for a Boo at the Zoo event. We all wore costumes, visited the animals, and even got to Trick-or-Treat in a section of the zoo. It was a fun day- our biggest challenge was finding parking. What a different day it would have been if Owen had joined us. The packing of supplies and equipment, making of medicine and back-up medicine, extra clothes and diapers, formula and bottles, concerns about the weather, the long drive to the zoo, pressure sores from sitting in a car seat and then wheelchair all day... and the list goes on. This trip just entailed having money to get in and not forgetting the Rapunzel hair for Ellie's costume.
My first realization of needing a badge happened soon after we arrived at the zoo. As we entered the first exhibit we encountered a mom with two little girls, both under the age of five. One girl ran ahead pointing out the animals as she spotted them. As the mom reminded her not to get too far ahead, she remained close by her other daughter, who was blind. There was a look on this mother's face of calm intensity- she was focused on helping her daughter navigate a crowded hallway and making sure the children running by in all directions did not knock her off balance. I immediately felt a sense of camaraderie with this woman; Owen was also blind. I wondered if she was bothered by the fact that her daughter could not see the animals? Then I immediately thought of all the other senses coming into play in the enclosed bird exhibit. The echos, the dim hallways with brightly lit animal enclosures (perhaps she had some vision like Owen and could see contrasts in light and dark?), surely she could smell the smells you only find at a zoo. I wanted to touch this woman's shoulder and tell her I understand. I get it- I can imagine all of the things going through her mind and she is not alone.
A few exhibits later, we came across a little boy in a wheelchair. We were once again in an indoor exhibit. I don't remember the animal, but I do remember, to get to the glass, you had to walk down long stadium seating. No problem for Ellie and the numerous other children, they bounded down the elongated steps and got up very close (perhaps too close to that glass...all those germs...). The mom and the little boy hung back at the top step. She would not be able to navigate the wheelchair down those five steps on her own. This time I did say something, I offered to help carry him down. I mumbled something incoherent about having a son with a wheelchair and how I understood. The mom declined my offer and I retreated. She didn't know I was her a few short weeks ago. I know what it is like to have a child in a wheelchair who is missing out on the freedom a typical child enjoys.
I knew what we looked like to these moms: a perfect family; Rapunzel the typical three year old, a Red Sox player dad, a cat mom, and even an extra body to help out- Meme the witch. What they couldn't see was the gaping hole following us through the zoo where Owen should have been dressed as a pumpkin. I didn't have my badge on to let them know I was actually one of them.
When we went places with Owen, I would make eye contact with numerous people, we would acknowledge each other silently and know that we each understood the mutual challenges we face each day. I am no longer part of that group and I still want to be. If I had a badge, one easily recognizable to parents who have children with special needs, maybe it would provide comfort to those families. It would provide comfort to me. I have lived life with a healthy baby girl and I have lived life having a special needs child. My family may appear to be healthy and complete, but it is not. Owen is missing and it hurts to not be able to share that part of me at all times.
I want everyone to know our son is missing from our group. I want people to know that my offers to help come from a deep need to make their day easier. I understand how difficult even the simplest outing can be. If I was wearing my badge, maybe the mom with the child in the wheelchair would have let me help bring her son closer to the glass. She needed a helping hand, and unfortunately both of mine have been empty for three and a half weeks.
I envision these badges to be unassuming, but something all women would be able to immediately recognize. I could pass by and dip my head with a slight smile in recognition of their hard work. Perhaps it would fuel conversations for those who have not yet experienced child birth. Fellow badge wears would be able to recognize each other immediately and know they share a common bond; a unique experience that not everyone is able to participate in.
Since Owen has passed away, I have come to realize I want to wear a badge. I am not sure what it should look like, but I want it to say things like, "I get it!", "Is there any way I can help you?", "You are amazing and doing the best you can", and "We may look like a typical family of three, but we are far from it". Without Owen, Pete and I have worked very hard to stay busy. We fill our free time with projects and activities because idle time allows for the grief to sneak in. It is with us all of the time, but if we remain busy we feel like we are tricking ourselves into moving forward.
A few weeks ago, we took Ellie to the Franklin Park Zoo for a Boo at the Zoo event. We all wore costumes, visited the animals, and even got to Trick-or-Treat in a section of the zoo. It was a fun day- our biggest challenge was finding parking. What a different day it would have been if Owen had joined us. The packing of supplies and equipment, making of medicine and back-up medicine, extra clothes and diapers, formula and bottles, concerns about the weather, the long drive to the zoo, pressure sores from sitting in a car seat and then wheelchair all day... and the list goes on. This trip just entailed having money to get in and not forgetting the Rapunzel hair for Ellie's costume.
My first realization of needing a badge happened soon after we arrived at the zoo. As we entered the first exhibit we encountered a mom with two little girls, both under the age of five. One girl ran ahead pointing out the animals as she spotted them. As the mom reminded her not to get too far ahead, she remained close by her other daughter, who was blind. There was a look on this mother's face of calm intensity- she was focused on helping her daughter navigate a crowded hallway and making sure the children running by in all directions did not knock her off balance. I immediately felt a sense of camaraderie with this woman; Owen was also blind. I wondered if she was bothered by the fact that her daughter could not see the animals? Then I immediately thought of all the other senses coming into play in the enclosed bird exhibit. The echos, the dim hallways with brightly lit animal enclosures (perhaps she had some vision like Owen and could see contrasts in light and dark?), surely she could smell the smells you only find at a zoo. I wanted to touch this woman's shoulder and tell her I understand. I get it- I can imagine all of the things going through her mind and she is not alone.
A few exhibits later, we came across a little boy in a wheelchair. We were once again in an indoor exhibit. I don't remember the animal, but I do remember, to get to the glass, you had to walk down long stadium seating. No problem for Ellie and the numerous other children, they bounded down the elongated steps and got up very close (perhaps too close to that glass...all those germs...). The mom and the little boy hung back at the top step. She would not be able to navigate the wheelchair down those five steps on her own. This time I did say something, I offered to help carry him down. I mumbled something incoherent about having a son with a wheelchair and how I understood. The mom declined my offer and I retreated. She didn't know I was her a few short weeks ago. I know what it is like to have a child in a wheelchair who is missing out on the freedom a typical child enjoys.
I knew what we looked like to these moms: a perfect family; Rapunzel the typical three year old, a Red Sox player dad, a cat mom, and even an extra body to help out- Meme the witch. What they couldn't see was the gaping hole following us through the zoo where Owen should have been dressed as a pumpkin. I didn't have my badge on to let them know I was actually one of them.
When we went places with Owen, I would make eye contact with numerous people, we would acknowledge each other silently and know that we each understood the mutual challenges we face each day. I am no longer part of that group and I still want to be. If I had a badge, one easily recognizable to parents who have children with special needs, maybe it would provide comfort to those families. It would provide comfort to me. I have lived life with a healthy baby girl and I have lived life having a special needs child. My family may appear to be healthy and complete, but it is not. Owen is missing and it hurts to not be able to share that part of me at all times.
I want everyone to know our son is missing from our group. I want people to know that my offers to help come from a deep need to make their day easier. I understand how difficult even the simplest outing can be. If I was wearing my badge, maybe the mom with the child in the wheelchair would have let me help bring her son closer to the glass. She needed a helping hand, and unfortunately both of mine have been empty for three and a half weeks.
Wednesday, October 30, 2013
Two Weeks
Today marks two weeks since Owen passed away. I have composed many blog posts in my mind since then, but have not been motivated to type one out until now. Two days after losing Owen, we moved. This was actually really helpful for Pete and I- we were consumed with the stresses of packing, moving, and unpacking (and ripping up questionable wall-to-wall pink carpet). We only slept in our Clinton Street house for one night after Owen died and it was very obvious to me I had emotionally moved on from that house. My dining room-turned playroom-turned-Owen's room felt empty without my boy sleeping within sight of the living room. I turned my head to check on him many times on the last Thursday in the house. I was happy to leave- the neighbors are dearly missed, but that house is not.
I am less confident the timing of the move was helpful for Ellie. She has struggled with Owen being gone. We have a wonderful family therapist and my best friend is a psychologist. They have both been very helpful in explaining the level of understanding Ellie has of everything that has happened at a 3.5 year old level. She misses Owen, she initially asked frequently when he was going to come back from Heaven, but seems to have now accepted he will not return. She then decided that she was going to Heaven in two weeks to be with him. She also expressed concern about who was next to go to Heaven. She has now moved on to making 'wishes' such as: before I eat this piece of candy I am going to make a wish: "I wish that Owen would come back from Heaven." It is heartbreaking. We work hard to speak concretely to her about what has happened. When Owen was living, we often pointed out the ways Owen's body was different from hers and how it did not work properly for him. We have continued this conversation with her now that he is gone. We speak plainly about how his body stopped working for him, that he died, that no one did anything to make it happen, that we miss him, that Mommy and Daddy are not going anywhere, and that he is in Heaven.
The concept of Heaven is a bit abstract for her. You can see how her mind is working to understand where Heaven is located, what exactly constitutes an angel, and will gobble up any nugget of telling regarding these subjects. A few days ago, she asked me, "Mommy, do you think sometime if we look up at the clouds, we will see Owen poke his toes down at us?" I can only hope- I really miss those long, pale stinky feet. They were some of the cutest toes I have ever encountered.
For me, it has been far more difficult than I anticipated. Loving Owen was an exhausting endeavor. His need of round-the-clock care, round-the-clock medication, and unpredictable moods left Pete and I with very little reserve after two years. I do not miss those parts of Owen's life. I sure do miss holding my boy. I miss dressing him, bathing him, I miss calling to check on his day when I am at work, kissing his face until he would grimace, I miss listening to him breathe and hearing him clang his toys on his toy bar, I miss feeding him bottles and having him pee on me almost daily, I miss putting lotion all over his body as he would wiggle and protest, I miss rubbing Aquafor on his face and telling him he wasn't going to be a crusty boy, I miss putting gel in his hair to make those red curls look adorable. I could continue this list for a long time before I ran out of all the things that made Owen such a blessing in my life.
I do not miss the making or dispensing of medication, the constant trips to CVS to pick up medication, the cleaning of syringes piled up endlessly next to my sink, the long phone calls to insurance and pharmacy companies for supplies, the stress and planning required to take him out of the house for a simple trip, or watching him have seizures, cry out in distress, or struggle to breathe.
I am thankful that his body is now at peace and his soul is in Heaven, but I know it will be a long time before I will be able to get through my day without feeling like a large piece of me is missing. The grief I feel comes in waves and unfortunately it seems to be harder two weeks later than it did in the days after Owen passed away. I remember the dark days after Owen was diagnosed as a two month old. I was deeply depressed and did not feel I would ever be capable of feeling joy again. At some point, I came out of that place and was able to live life and love my two kiddos as any mom does. I know the overwhelming sadness I feel right now will eventually dissipate. A dear friend, who lost her son a number of years ago at the age of twenty-three, shared with me she still has days where she cries over the pain of him being gone. It is daunting to know I will forever have these dark days of sadness and ache for Owen. If this is the return for the two years that I got to love my boy then I can accept that exchange.
I am less confident the timing of the move was helpful for Ellie. She has struggled with Owen being gone. We have a wonderful family therapist and my best friend is a psychologist. They have both been very helpful in explaining the level of understanding Ellie has of everything that has happened at a 3.5 year old level. She misses Owen, she initially asked frequently when he was going to come back from Heaven, but seems to have now accepted he will not return. She then decided that she was going to Heaven in two weeks to be with him. She also expressed concern about who was next to go to Heaven. She has now moved on to making 'wishes' such as: before I eat this piece of candy I am going to make a wish: "I wish that Owen would come back from Heaven." It is heartbreaking. We work hard to speak concretely to her about what has happened. When Owen was living, we often pointed out the ways Owen's body was different from hers and how it did not work properly for him. We have continued this conversation with her now that he is gone. We speak plainly about how his body stopped working for him, that he died, that no one did anything to make it happen, that we miss him, that Mommy and Daddy are not going anywhere, and that he is in Heaven.
The concept of Heaven is a bit abstract for her. You can see how her mind is working to understand where Heaven is located, what exactly constitutes an angel, and will gobble up any nugget of telling regarding these subjects. A few days ago, she asked me, "Mommy, do you think sometime if we look up at the clouds, we will see Owen poke his toes down at us?" I can only hope- I really miss those long, pale stinky feet. They were some of the cutest toes I have ever encountered.
For me, it has been far more difficult than I anticipated. Loving Owen was an exhausting endeavor. His need of round-the-clock care, round-the-clock medication, and unpredictable moods left Pete and I with very little reserve after two years. I do not miss those parts of Owen's life. I sure do miss holding my boy. I miss dressing him, bathing him, I miss calling to check on his day when I am at work, kissing his face until he would grimace, I miss listening to him breathe and hearing him clang his toys on his toy bar, I miss feeding him bottles and having him pee on me almost daily, I miss putting lotion all over his body as he would wiggle and protest, I miss rubbing Aquafor on his face and telling him he wasn't going to be a crusty boy, I miss putting gel in his hair to make those red curls look adorable. I could continue this list for a long time before I ran out of all the things that made Owen such a blessing in my life.
I do not miss the making or dispensing of medication, the constant trips to CVS to pick up medication, the cleaning of syringes piled up endlessly next to my sink, the long phone calls to insurance and pharmacy companies for supplies, the stress and planning required to take him out of the house for a simple trip, or watching him have seizures, cry out in distress, or struggle to breathe.
I am thankful that his body is now at peace and his soul is in Heaven, but I know it will be a long time before I will be able to get through my day without feeling like a large piece of me is missing. The grief I feel comes in waves and unfortunately it seems to be harder two weeks later than it did in the days after Owen passed away. I remember the dark days after Owen was diagnosed as a two month old. I was deeply depressed and did not feel I would ever be capable of feeling joy again. At some point, I came out of that place and was able to live life and love my two kiddos as any mom does. I know the overwhelming sadness I feel right now will eventually dissipate. A dear friend, who lost her son a number of years ago at the age of twenty-three, shared with me she still has days where she cries over the pain of him being gone. It is daunting to know I will forever have these dark days of sadness and ache for Owen. If this is the return for the two years that I got to love my boy then I can accept that exchange.
Wednesday, October 16, 2013
Flying High
My beautiful baby boy earned his angel wings this morning. Here is the obituary written by my wonderful friend, Lisa. He was so very loved.
Owen O’Donnell Marshall, age 2, died peacefully while in hospice care on Wednesday, October 16, surrounded by his family.
Born in Newburyport, Mass., on August 27, 2011, he is survived by his parents Peter and Sommer Marshall of Georgetown, formerly of Amesbury; his big sister Ellie Marshall of Georgetown; his maternal grandparents, Marylou and Tony Hammond of Minneapolis, Minnesota; his paternal grandparents, Jason and Linda Marshall of Tewksbury; and his many aunts, uncles, cousins and friends.
Owen, a blue-eyed, red-haired, loving little boy, was cherished by his parents, big sister, family, friends and caregivers. He earned the love and affection of many supporters from across the state and country for his courageous battle with a brain disease—documented by a blog his mother updated faithfully, chronicling his triumphs and challenges.
“This blog is my way of celebrating the blessing he is in my life and sharing the painful journey he has in this world,” his mother wrote.
Owen brought joy to all those who knew him and melted the hearts of those lucky enough to catch a glimpse of his bright, blue eyes. He loved being held and snuggling and became quite the traveler, taking special family trips, including one to New Hampshire and Santa’s Village this summer.
Like his parents, he was an avid sports fan. He wore his jerseys proudly on game days.
Owen recently celebrated his second birthday with a party and gifts with his family and friends, including a special dinosaur cake baked just for him.
To celebrate Owen’s life, a memorial service will be held Sunday, October 20, at 1:00 p.m. at Main Street Congregational Church, Amesbury, MA. A small reception will follow.
In lieu of flowers, donations can be made in Owen’s name to: Pentucket Early Intervention, P.O. Box 356, West Newbury, MA, 01985.
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