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.
Thursday, December 26, 2013
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.
Saturday, October 12, 2013
Genetics Follow-up
Pete and I had the opportunity to meet Owen's new geneticist on Thursday afternoon. Owen has been very ill and did not make the trip with us into Boston, but he was still the star of the show. Owen's previous geneticist moved out of state at the beginning of the summer and we were ready to start anew with a different set of eyes on Owen. We had very low expectations about what would be discussed at the meeting, but left two hours later with renewed hope.
We are running two new tests for Owen. One deals with a more detailed analysis of Owen's mitochondria. When we did the muscle biopsy in June, the results did show an abnormality. It is possible that this was explored and ruled out by Owen's previous doctor, and it did not show up on the Whole Exome Sequencing (WES), but we all felt it was worth investigating. They are also going to run a few tests related to Owen's creatine. There have been abnormal levels that our new geneticist, Dr. J, feels are worth exploring. The third new path is related to the abnormal sodium channel gene that both Pete and I passed on to Owen. When we received the WES results, this was the only useful bit of information it included. Pete and I both have an abnormal (although benign) gene. We each gave it to Owen. It is possible this is related to his disease. Seizure activity is related to the sodium channel genes, and we all know Owen has a very severe uncontrolled seizure disorder. Dr. J contacted some researchers in Michigan who study this gene exclusively and they are VERY interested in Owen. I have always felt there was someone who would find Owen fascinating; we just needed to find them. I am hopeful that Owen will provide some interesting information to these researchers; maybe they will be able to help solve the mystery that is my boy.
The second part of our meeting was genetic counseling. Pete and I are hopeful we will be able to expand our family in the future. We were seeking the statistics related to the genetic risks we face with future children. We have Ellie, so we know it is possible for us to create a healthy child. Our discussions were very scientific, there will be no wine or candles involved in creating a possible baby #3, but we have renewed hope for another child in the future.
All in all, it was an encouraging meeting. It is nice to have a glimmer of hope related to genetics after feeling like the door had been closed on us.
We are running two new tests for Owen. One deals with a more detailed analysis of Owen's mitochondria. When we did the muscle biopsy in June, the results did show an abnormality. It is possible that this was explored and ruled out by Owen's previous doctor, and it did not show up on the Whole Exome Sequencing (WES), but we all felt it was worth investigating. They are also going to run a few tests related to Owen's creatine. There have been abnormal levels that our new geneticist, Dr. J, feels are worth exploring. The third new path is related to the abnormal sodium channel gene that both Pete and I passed on to Owen. When we received the WES results, this was the only useful bit of information it included. Pete and I both have an abnormal (although benign) gene. We each gave it to Owen. It is possible this is related to his disease. Seizure activity is related to the sodium channel genes, and we all know Owen has a very severe uncontrolled seizure disorder. Dr. J contacted some researchers in Michigan who study this gene exclusively and they are VERY interested in Owen. I have always felt there was someone who would find Owen fascinating; we just needed to find them. I am hopeful that Owen will provide some interesting information to these researchers; maybe they will be able to help solve the mystery that is my boy.
The second part of our meeting was genetic counseling. Pete and I are hopeful we will be able to expand our family in the future. We were seeking the statistics related to the genetic risks we face with future children. We have Ellie, so we know it is possible for us to create a healthy child. Our discussions were very scientific, there will be no wine or candles involved in creating a possible baby #3, but we have renewed hope for another child in the future.
All in all, it was an encouraging meeting. It is nice to have a glimmer of hope related to genetics after feeling like the door had been closed on us.
Monday, October 7, 2013
Owen Being Owen
My guy has yet again pulled off an amazing feat of trickery. Owen became very sick on Tuesday. To backtrack a bit, Owen has basically been sick since the end of August. He has battled cold after cold, relentless seizures, respiratory distress, fevers, and irritability. September was a long month with Owen. On Tuesday, his overall discomfort reached a point where we felt it was necessary to give additional medication to sedate him. By Wednesday, his 'illness' had reached such a point of respiratory distress that we were asked to contact Hospice because his doctors were concerned he had reached an end of life stage. I was called home from my job as his work to breathe became frightening and he was having frequent apnea episodes with his nurse.
As hard as I try to not 'drink Owen's drama-filled Kool-aid', he suckered me in once again. I have never seen him look so ill or so in distress. I was prepared to say good-bye to my sweet little boy. Over the course of the next three days, Owen improved slowly. The fevers have slowly come down and the breathing has very slowly regulated back to his previous poor baseline. Unfortunately, Owen continues to struggle with uncontrolled seizures and intense irritability. He has almost zero positive awake-time right now. He cries, he arches, and he is not consoled by being held. Putting him down is impossible when he is like this. We have drastically increased his medication to provide him with comfort (ie. sedation), because he is achieving a failing grade on our 'Quality of Life' scale.
I don't know what this means for the future with Owen. I assume the irritability is related to the unrelenting seizures, but we do not have an effective way to stop those. It breaks my heart to think we are now moving into an moment in time where sedation is the only way to keep him calm and peaceful. Living a life with a mystery child- one with no diagnosis to help guide us though what to expect for him is a form of torture. Every decision made is second-guessed because we never know what is approaching next. I did not foresee this in Owen's near future at the end of August as we celebrated his second birthday.
We meet with a new geneticist on Thursday, Owen's previous doctor moved out of the area around the time of his surgery this past June. Maybe there will be hope for answers or new ideas on Thursday? I really don't think so, but Pete and I have no other choice right now. We need to keep searching for why this is happening to Owen. We just need to keep moving forward- even if the future is filled with terrible things for our boy and his life with us.
As Owen battled for his life on Wednesday, Pete was with our amazing doctor, Karen. He had the opportunity to speak on a panel at a palliative care conference for about 200 area physicians. Pete provided a parent's perspective about coordinating care with medically complex children who have a poor overall prognosis. I am extremely proud of him for doing this. I read over the notes he had written prior to the panel, and the message he had to share was so important: We can accept the realities of our child and diagnosis, but we need help and guidance about making decisions for care related to the big picture. With palliative care, it is less about 'fixing', and sometimes those who have spent their adult life training to heal and fix have a hard time recognizing this reality.
Even in the dark times we are experiencing with Owen right now, he continues to inspire and motivate us. It is occasionally hard to feel blessed to be Owen's parent as he screams from 2-4am, but in the quite moments, Pete and I know he has shown us how important it is to live life in the present. We try to be grateful for every moment we have with Owen...even the 2am moments.
As hard as I try to not 'drink Owen's drama-filled Kool-aid', he suckered me in once again. I have never seen him look so ill or so in distress. I was prepared to say good-bye to my sweet little boy. Over the course of the next three days, Owen improved slowly. The fevers have slowly come down and the breathing has very slowly regulated back to his previous poor baseline. Unfortunately, Owen continues to struggle with uncontrolled seizures and intense irritability. He has almost zero positive awake-time right now. He cries, he arches, and he is not consoled by being held. Putting him down is impossible when he is like this. We have drastically increased his medication to provide him with comfort (ie. sedation), because he is achieving a failing grade on our 'Quality of Life' scale.
I don't know what this means for the future with Owen. I assume the irritability is related to the unrelenting seizures, but we do not have an effective way to stop those. It breaks my heart to think we are now moving into an moment in time where sedation is the only way to keep him calm and peaceful. Living a life with a mystery child- one with no diagnosis to help guide us though what to expect for him is a form of torture. Every decision made is second-guessed because we never know what is approaching next. I did not foresee this in Owen's near future at the end of August as we celebrated his second birthday.
We meet with a new geneticist on Thursday, Owen's previous doctor moved out of the area around the time of his surgery this past June. Maybe there will be hope for answers or new ideas on Thursday? I really don't think so, but Pete and I have no other choice right now. We need to keep searching for why this is happening to Owen. We just need to keep moving forward- even if the future is filled with terrible things for our boy and his life with us.
As Owen battled for his life on Wednesday, Pete was with our amazing doctor, Karen. He had the opportunity to speak on a panel at a palliative care conference for about 200 area physicians. Pete provided a parent's perspective about coordinating care with medically complex children who have a poor overall prognosis. I am extremely proud of him for doing this. I read over the notes he had written prior to the panel, and the message he had to share was so important: We can accept the realities of our child and diagnosis, but we need help and guidance about making decisions for care related to the big picture. With palliative care, it is less about 'fixing', and sometimes those who have spent their adult life training to heal and fix have a hard time recognizing this reality.
Even in the dark times we are experiencing with Owen right now, he continues to inspire and motivate us. It is occasionally hard to feel blessed to be Owen's parent as he screams from 2-4am, but in the quite moments, Pete and I know he has shown us how important it is to live life in the present. We try to be grateful for every moment we have with Owen...even the 2am moments.
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