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.

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.

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.

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.