"The only way out is through"

As I was sifting through old boxes, playing a game of keep or toss, I came across a stack of calendar scraps saved from years ago. A little 2005 square Mary Engelbreit desktop calendar, drawings with accompanying quotes to be torn off as the days go by. I don't know if I believe in coincidence anymore. Irony and deeply layered meanings, yes, I see it everywhere. Even in the form of a quote which surfaces the moment inspiration and soothing words are needed. Distracted from sorting, I absorb the pages, reading between the lines, dissecting text as if it were freshman literature. In the absence of an ocean, some words roll off the tongue and wash over us providing a similar comfort, renewal, and empowerment to take another step forward.

"Be not the slave of your own past ~ plunge into the sublime seas, dive deep, and swim far, so you shall come back with self-respect, with new power, with an advanced experience, that shall explain and overlook the old." Ralph Waldo Emerson

"To see a world in a grain of sand & heaven in a wildflower, hold infinity in the palm of your hand & eternity in an hour." William Blake

"The only way out is through." Robert Frost

I wonder if there really is another end of grief, a way out, a way through. It's hard to imagine my days without grief, but then again it was impossible to imagine life without Cooper. Why is it so hard to let go. I don't think letting go of grief is synonymous with letting go of memories, but I'm having a hard time picturing it. I can't quite wrap my head around it.

Blink

Four years old in heaven today. It still feels as if I'm caught in a time warp, a wrinkle. His blankets have lost their scent & I can no longer feel the weight of his body in my arms. I can't imagine what he would have been like at age four. I see my friend's children at this age and try to picture Cooper running around, talking, playing, eating off my plate, but the image just isn't there.

Yet, in this space between yesterday and years ago our memories with him are very real and I find myself hanging onto them, gripping tightly.

ONE

TWO

THREE

FOUR

Happy Birthday baby boy.

Sitting. Thinking. Waiting.

My Grandmother "Mawmaw Eva" is dying.

She is 94 years old. Nearing the end of life is not a surprise, but I am so sad she will be gone. She called me her namesake, Eva Michelle, and liked to use my full name often. We lived with her for a short time when I was young and I have lots of happy memories helping in the kitchen, snuggling up in her lap, reading stories, and taking naps or as she called it "resting our eyes." Mawmaw was the greatest nap partner because she didn't sneak away after I fell asleep. She actually napped with me and I loved that we would wake up together. Even now, all I want to do is whisper for her to scooch her over so I can lay beside her, staying there until she wakes up, but I know I can't make that promise.






She doesn't have the strength to say much and what is said lacks context. Staring in the direction of the window she asked "will he be there?" I don't know to whom or where she was referring, perhaps her late husband (Pawpaw) Doyle, her son (Uncle) Van, her great-grandson Cooper, her brothers, her friends, or even God? I have no idea, but yes, I'm sure he will be there.

She is and has been such an important influence in my life, present for so many milestones. I am elated that she was able attend birthdays, violin concerts, graduations, to know my husband, witness our wedding, hold her great-grand baby.

Grandma, Michelle, Mawmaw

Mawmaw & Cooper

Her breathing has slowed and I know she and Cooper will be together in heaven soon.

I went to visit the Gardens today, to sit on the rocks next to Cooper's spot. It is always so peaceful there and with much on my mind was a great place to just be. I was reminded instantly why we chose this place for his ashes. One of my favorite things is just past the roses and over the creek. There stands a statue of a family and a father holding up his son playfully. Reminds me of someone.




It feels strange to see her stepping out of this life and into heaven. There is so much about dying that I associate with Cooper and it brings all those memories rushing back. The smell of oxygen on her breath, making sure she's comfortable, pain free, lips aren't too dry, no bed sores or skin breakdown behind her ears where the cannula sits, listening to her breathe. It's all so familiar and not so scary this time around. I know what to expect and that makes me feel somewhat hardened.

During our visit Mawmaw kept trying to sing something and no one could figure out what song it was. She loves gospel music and hymns and since then I've had the children's bible song stuck in my head... Deep and Wide, Deep and Wide, There's a fountain flowing deep and wide.

I love you deep and wide Mawmaw. It's ok to rest your eyes, he will be there.

7,000 bracelets of hope

Most days I don't really give much thought to checking the mail, but every now and then there is a sweet unexpected surprise among the anticipated bills and weekly advertisements. Yes, postal mail. It takes time to address an envelope and requires a moment of thought for contents which makes it all that much more special. We live in an older neighborhood where mailboxes hang on the front porch and letter carriers actually walk from door to door. It's charming and neighborly and today, delightful!

   

A few months ago I registered for the Global Genes Project 7,000 bracelets of hope campaign. It was World Wide Rare Disease Day and I thought the bracelets were a brilliant idea for raising awareness of rare diseases and spreading hope.

Hope, as involved as finding a cure, or as simple as the warm and fuzzies, to know someone is thinking about families touched by rare disease. Today it appeared in the mail, a little reminder that we are not alone. An unexpected surprise with impeccable timing.




A special thank you to the thoughtful woman who made and donated the bracelet I received.

It's beautiful and I will wear it with pride.

Part 1: Diagnosis

May16. The anniversary of Cooper's diagnosis which in many ways feels harder to deal with than his death. It seems appropriate to start posting "Philosophy of Care Video Script" responses today because it is in essence the beginning of a chapter, diagnosis day.

See post "Conference Abridged" for background on Philosophy of Care Video Script 

After the shock of the diagnosis, how did you come to understand it and what to expect?
The shock of diagnosis was just that, a shock. Honestly at this point we had prepared ourself for some type of physically dibilitating condition or chronic illness, maybe Cooper would need in a wheelchair, or ongoing therapy. The idea that he might have something terminal did not even enter our minds. Death was not on our radar. Immediately after Cooper's diagnostic MRI, before we had even left the hospital, the neurologist called to set up a consult as soon as possible. The urgent yet evenly collected overtones in his voice caused my heart to plunge into the pit of my stomach, trailed by a deafening silence. My mind filled with thought bubbles, like the gophur hunt game at a children's arcade trying to hit one on the head and another pops up elsewhere, questions both exponential and revolving. The very next day I remember checking in for the consult with David and Cooper, but instead of being led to an exam room we were shown to the neurologist's personal office. He asked us to sit down and then my mind goes blank. I can't remember his exact words, only that he handed us a box of tissue and said he was going to step out to give us a moment. Before we left his office, we were scheduled for a follow up appointment with a geneticist who would provide further explanation of the disease, and what to expect. That next appointment lasted almost four hours and was much like a cellular biology break-out session amid an anatomy physiology workshop. We certainly had a foundation for understanding lysosomal storage disease and GM1 after that, but it still didn't feel real. If there is such a thing as an out of body experience, that was it, surreal and mind numbing.

Questions about coping with diagnosis?
Internet, internet, internet. My first instinct was to delve into research. I guess this in some ways constitutes denial. I was certain that someone out there had the answer. If our doctor here didn't have a cure, surely there was a researcher in another state, another country. It was uncomprehensible that our baby, who didn't look like he was dying, might only live one or two years. Of course we were ready and willing to do anything, travel to the ends of the earth, whatever it took to give Cooper the long and happy life he deserved. The reality that we couldn't "fix" him and the fact that a cure really didn't exist was crushing, but we knew every stone had been turned and all possible avenues exhausted. It was then, and only then, that we were able to focus on the present. Our son was still with us in that moment and we needed to put our best foot forward for him, one step at at time.

Which doctors were most helpful?
The geneticist was helpful in terms of explaining what was happening physiologically and providing textbook version of what could be expected. In hindsight, I wish we would have consulted the pediatric palliative care doctor at this point instead of waiting until Cooper started experiencing challenges due to progression. Our palliative care doctor (and team) was most helpful with navigating day to day needs, challenges, support, and even medication changes that went hand in hand with progression which never seemed to occur duing business hours!

How did NTSAD help?
NTSAD was the first organization we reached out to and I am so glad we did. When facing a rare disease it's easy to feel isolated, hard to find someone to connect with and even harder to find someone who's gone through it. Most doctors have never seen a child with GM1 or allied diseases and medical textbooks don't acknowledge the realm of daily living skills necessary to cope much less function. NTSAD was able to put us in contact with other parents who have been down this road, some with children who were living and some who's children had passed. It was so beneficial to have an opportunity to ask experience based questions and have a network of parents for support.

Mother's Day

For me it feels complicated and confusing, unsure if I still belong amid this hallmark day. A reminiscent, joyful, memorable, bittersweet, significant day. I remember the excitement, anticipating Cooper's arrival. I was going to be a mom and what an amazing high to think that this was the first of many Mother's days to come. I don't know if there is an antonym to describe the polar opposite of "on cloud 9," but I certainly felt it the following year. Devastating, yes, yet unable to derail the unconditional, unending love that is motherhood.

I don't fit into the commercial mold that is Mother's Day and have been struggling with this question of identity since Cooper passed away.  I came across a blog post by Carmen's Mom, Lana, that had me in tears yesterday as she has so eloquently shared her experience, feelings which mirror my own.

Blessed Are Those Who Mourn (on Mother’s Day)
May 8, 2011 in Lana's Journal

This post is dedicated to all the moms out there who have lost babies through miscarriage and still birth, lost children young and old, and had failed adoptions. Special hugs today to the moms who have lost their only children and find themselves in the strange place of being both a mom and childless. You ARE a mom.

To all the women who have never been able to have children and find this day especially painful, my heart goes out to you.

Blessed are those who mourn, for they will be comforted. Matthew 5:4

***

Nine years ago, Dave and I were visiting relatives on Mother’s Day. I had recently suffered my second miscarriage and was feeling vulnerable and emotional on the day dedicated to moms. As we sat in church that Sunday morning, I was hoping that the pastor wouldn’t make a big deal about all the moms. I thought I might sink into the ground when he asked all the moms to stand up and the ushers passed out pens decorated with flowers and “Happy Mother’s Day.” Everyone smiled and clapped. I was on the verge of tears.
As soon as the service ended, my father-in-law disappeared. A few minutes later he came back into the sanctuary, handed me one of the Mother’s Day pens and said, “You are a mom. I want you to have this.”

I felt like a mom but I didn’t think anyone else viewed me as one.

But someone did.

Thank you Doug.

Since that day, I’ve never been able to fully enjoy Mother’s Day. I feel for all the women who are hurting on that day.

And now I’ve joined another group of women, those who have loved, cared for and said goodbye to their child or children way too early.

Today is my first Mother’s Day since Carmen passed away.

I have my two bundles of joy who will make this day extra special. Lauren will be ecstatic to give me her Mother’s Day school project and the present I bought for myself but that she thinks Daddy bought (hee, hee!). Hope will be her usual ball of energy and exuberance. And Dave will do all sorts of things to make the day wonderful for me.

I am thankful.

But someone is missing.

Etymology

Lack of a word for bereaved parents has become a perseveration and just this morning it occurred to me, perhaps there hasn't been the need for such a definition until now. The word orphan for example dates back to the late 1400's, and it appears the term orphanage wasn't documented until the late 1800's amid the industrial revolution. What to call an institute for parentless children seemingly created out of necessity for the time. Even more recent words like parentcraft from the 1930's evolved into parenting, which wasn't recognized until the 1950's. I know, fully aware of my geek out moment and moving on.

I was thinking about the mortality rate of children during or within a year of childbirth 20, 50, 100 years ago and how our expectation of life saving measures morph in perpetual motion with medical advancement. As our knowledge of disease and genetics improve so does the potential treatment. In this day and age it's hard to imagine that yes, there are still diseases, conditions, syndromes, without a cure. I think about my grandparents who grew up on farms and their understanding of death at such an early age. The circle of life was a fact of life, may not have made it any easier to cope with loss, but it wasn't a shocking or unprecedented event either. As we become more urbanized, sheltered from the throws of nature, I'm willing to bet more people look to "The Lion King" for explanation rather than draw from an actual experience with death. Yes, bereaved parents are less and less common {thankfully}, which also means fewer people are able to relate. A vicious cycle.

If trends in music, mashups, create new sounds by blending pre-recorded tracks together, surely there is a similar market for new words too. So here goes. 

Starting with the definition: 

bereaved parent, to mourn the death of a child

Origins: 

Bereaved from Latin orbus, Greek orphos "bereft" and PIE (Finnish) orbh "to change allegiance, to pass from one status to another." 

Parent from Latin parentem (parens, pare) "to bring forth, give birth to, produce."

Mourn from Old Norse murna "to grieve over the dead," PIE (Finnish) smer "to remember," and mer "to die, wither." 

Possible Words: 

Parorbus

Paromer

Parormer

Parorm

Parorhm

Parorphem

Conference Abridged

I may be physically home, but my brain is still in Boston. How to summarize an experience so full of raw emotion, acceptance, compassion? A utopian assembly where strangers instantly become family and everyone shares a common purpose no matter their station. Parents, affected children, healthy siblings, carriers, affected adults, spouses, grandparents, researchers, doctors, nurses, caregivers, friends, the newly diagnosed, and the veterans all together under one roof lending support, swapping stories, sharing tips, listening, learning, laughing, crying.

I feel like this is the one place where I can be known just as Cooper's mom, which is strangely comforting. Here, it's okay to introduce myself as Cooper's mom even though he has passed away. No one thinks it's weird, no explanation required, no need to brace myself for a reaction. I shared this thought with my bestest friend {Cooper's Godmother} and appreciated her response. She said something along the lines of "I get it, at home you wear many different hats and there you just wear one. There you are first and foremost Cooper's mom." David and I met a couple our first year who claimed to attend annual conference instead of therapy or counseling back home. It's taken me a few years to fully absorb that impact of that statement, and yes, it is that meaningful.







Yes, my name tag does say OCD. The self-descriptive ribbons made me laugh and this one seemed particularly fitting, so why not!

I was thankful for the opportunity to participate in several studies this year; (1) to better available carrier testing, (2) to identify potential biomarkers, and (3) a natural history. The biomarkers and natural history study will both be used to solidify metrics for use in the upcoming chaperone therapy clinical trial. The notion that by recounting our experience, and providing a single drop of blood another family might one day (soon) have a viable treatment option, it's invaluable. For me, participation enhances purpose, knowing we might have a some small impact and the ability to affect change. Empowering stuff.

This year I was asked to share a bit of our experience in the symptom management session and a more complete account as part of an NTSAD "Philosophy of Care" video. It was humbling to have been asked and I was honored to share. The idea behind the video being to "discuss experiences finding, developing their philosophy of care showing a range of approaches and how philosophy evolves as the disease progresses." The end result, available media of personal accounts for newly diagnosed families who may be interested in knowing what worked for others and provide another source from which to gather information. As I reviewed the interview template outlining topics and questions to be covered, I was impressed with the thoughtfully inclusive progressive structure. All of these questions and concerns, the same ones David and I waded through with Cooper. I jotted down some key points so as not to loose train of thought, but once in front of the camera I was asked to put all notes aside to avoid any crinkling sounds which may be picked up by the mic. In hindsight, I should have been prepared to respond to general topics instead of pointed questions. I didn't feel like my answers alone were anywhere near complete and wished David could have been there to help make it so. I may revisit the script and create a blog post for each topic providing more complete, concise responses, sans nervous fidgeting or inappropriate smiling.

Just Like Summer Camp

Our first year at conference we were able to attend as a family, David, Cooper and I. We were a bit apprehensive, nervous to meet the other families, yet wanting to learn every angle and possibility of what we could do for our son. That first conference was like jumping into uncharted waters feet first surrounded by lifeguards at the ready. We are eternally grateful for support and insight provided by NTSAD staff, parents, and presenters. It was overwhelming to say the least, but more like learning a foreign language though emersion, actually visiting the foreign country rather than taking the 16 week course from an instructor who's never walked the streets. Still, I am enlightened everyday by NTSAD family checking in on each other, sending words of encouragement, and sharing information. 

NTSAD Family Conference 2009
Boston MA

Last year we did not plan on going to conference at all. It had only been 6 months since Cooper passed away, and we couldn't bear the thought of attending without him. I knew I would be a mess with every hug, touch or smile and the commemoration ceremony, unfathomable. I was afraid to fall apart in front of everyone, afraid I wouldn't know what to do with myself. Though the day before conference I quite literally felt knots in my stomach knowing that I may regret missing out completely. We mustered together a last minute flight to Florida making it possible for me to attend one of the four momentous days. As feared, I did fall apart, however; I was not alone. I was engulfed by a mutual love and understanding that made it more than okay. I was so glad to have been there even if only for 24 hours. No regrets. 



NTSAD Family Conference 2010
St. Petersburg FL



Needless to say I'm hooked, I'm in. Come Thursday I will be Boston bound for the the annual NTSAD family conference; anxious to hug old friends and connect with new ones, to celebrate the lives our children and remember our angels. Here, friends easily pick up where they left off as if there is no time or distance between them, forever tied together through experiences. Just like summer camp, only we are all too aware of time. It ticks by with each new diagnosis and is marked with every pair of wings, our allied diseases both progressive and fatal. It has been said many times that this is a club no one every wants to be a part of, yet we're all so thankful it's here. This year I am eager to hear news of research advancements, clinging to the hope that time can soon be redefined. No longer a sponge soaked newbie or stumbling through the thick fog of grief, ready for conference to unfold.

Pen to Paper

"Profound losses leave us paralyzed & mute, unable really to comprehend them, still less to speak coherently about them. Yet, eventually, we do speak — we breathe, we sleep, we eat, we go for walks in the sun, we find ourselves laughing with our friends, as we lose the white-hot flame of the most intransigent grief, and pass into another, less desperate sort of being." ~Joyce Carol Oates

NY Times article "Why We Write About Grief" By JOYCE CAROL OATES and MEGHAN O’ROURKE

Who Am I



I often wondered about my role, my title, my purpose since Cooper passed away. In the years before Cooper, I would have described myself as a confident twenty-something, a wife, aspiring to do good in the world, following my dreams and creating a family. I turned 30 the year Cooper was born, and my ideallic swan-dive into motherhood looked more more like a cannon-ball. After a long stay in the NICU we managed, as most new families do, to find our own rhythm and jump back in to the hustle and bustle. It was when Cooper was 10 months old that he was diagnosed with an incurable and fatal childhood disease. All of our planning for the future; moving to a "good" school district, dreaming of a house on acreage for Cooper to run and play, only to learn that he would never walk and he wouldn't be alive long enough to ever attend school. Enter the first of many waves of grief, loss of a future with our son. At that moment, however; he was still alive and I was still his mother. We were incredibly blessed to have Cooper with us for 2 years and 11 days.

Now that he is gone, I wonder, am I still a mother? Those who lose a spouse become widows, and those who lose a parent become orphans. What becomes of a parent who loses a child?

When we meet new people and someone inevitably asks, "So, do you have kids" sometimes I freeze up, unsure of what to say. I don't always feel comfortable saying (some version of) "No, he passed away" because experience has taught me most people either instinctively withdrawal, feeling badly that they have asked in the first place, or become curious as to the cause of his death. I once tried to just say, "No, I don't have any children." Instant pangs of guilt ensued as if I had completely denied his existence which felt worse than the latter. Sometimes I wish I could respond with "No, I am a ____" and then divert the conversation elsewhere without having to go into a long explanation, but I am left searching for a word. Of course, I am {was} more than just Cooper's mother and he is {was} a gianormous part of me. That piece of me is missing and no one knows what to call it.

Today I am a childless mother taking it one day at a time, trying to remember who I was in order to learn who I have become.

The Moral of this Story

It is not uncommon for me to read something and ponder it for days, thinking about how it relates to my life, looking for connections and a bit of profound advise. I feel like there is always room to grow and perhaps see life through another lens, another vantage point, to actually walk a mile in someone else's shoes. I used to lie on the floor with Cooper as close as possible, our heads smooshed together trying to see the room, the lights, the fan as he saw it. Perspective intrigues me. There is no contesting life with a special needs child and the loss of a child are difficult roads. Our perspectivies and philosophies may differ, but we all grieve, we all search for understanding and we all celebrate the little things. Each in our own tidepool. 

"Shoes" 

Author Unknown

I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them. I get funny looks wearing these shoes. They are looks of sympathy. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off. I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some woman are like me and ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I will forever walk in the shoes of a woman who has lost a child.

"God’s a Zebra Too!"

Rev. Ron Campbell

I noticed a zebra figurine sitting on my pantry door-frame this morning. It reminded me of the only time I’ve ever written a preface to a pastoral prayer. It was Easter Sunday, 1999. Although it’s not Easter now, this might be a helpful word of comfort for some of you.

     “I feel led to share with you the context of the formulation of this Easter Sunday pastoral prayer. On Thursday afternoon I was standing in the checkout line at Albertson’s. In my basket I had several containers of vitamins. The lady behind me asked me if I were a doctor.  I said, ‘No, I’m a pastor.’ After a brief exchange she said she hadn’t gone to church in over two years. I invited her to attend our Easter Service. She said she might come the Sunday after Easter, as it would be too difficult to be in church on Easter Sunday. She was still grieving her son’s death. Her son had died two years before from meningitis at 18 years of age. She was grateful for the six weeks they had together to say goodbye, but now church was too painful an experience for her to bear.

     Tears welled up behind her eyes. I told her that I couldn’t relate fully to her pain as I had not had to make a place in my heart for this kind of loss. My son was alive. But I knew people who did understand her pain. One of my friends, whose daughter was tragically killed when she was 20, told me that although we’re all in the horse family, those who loose a loved one tragically or outside the expected life span are a sub-group. They’re zebras, with strips that can only be recognized by other zebras.

     The lady behind the woman who’d lost her son had been listening in. She looked at us with tears in her eyes and said ‘I’m a zebra. I’ve lost two sons.’ We shared a moment of quiet empathy, and then I inadequately expressed my hope that this Easter God would comfort them with his assurance.

     Later in the parking lot it came to me what I could’ve said and wish I’d said; ‘Although I can’t fully relate to your loss, there is someone who can. God knows your pain. He also lost a son. He knows what that’s like. And God also knows what the joy of reunion is like. That’s what we celebrate at Easter. God’s a zebra too. He has the same kind of stripes as you.’

     Church should be a place where zebras can come and feel God’s comfort in their pain. I offer our prayer today with these two mothers in mind as we pray as Jesus instructed us, not for the well, but for those who truly need of a word of assurance and hope from God.”