"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.

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

Silent Night

This post was also shared as an article on Hello Grief

My mother gave me a ticket for tonight's Christmas Sing Along with the Symphony. This was her second year to sing with the choir and she was so excited. I was happy to go, excited about singing some old favorites and who knows, maybe it would help my Christmas spirit. The music was wonderful and the atmosphere inspiring. There were people of all ages singing, laughing. When the orchestra began to play "Frosty the Snowman" a person dressed as a Snowman came out into the audience. The kids went nuts, rushing down the isles to see him and parents were snapping pictures like crazy people, and then it hit me. It hit me that Cooper would be 3 1/2 years old at this very moment, just like the little ones clamoring to meet Frosty, just like the little boy sitting behind me saying "look mommy!" My throat started to get that hard to swallow feeling and the silent tears began to fall. I was never more thankful to move on to the next song, to see Frosty exit, and the children to return to their seats. During the next few numbers I was able to pull it together and enjoy the music - 12 Days of Christmas, Rudolph the Red Nosed Reindeer, a reading of The Night Before Christmas, Silent Night. Oh, Silent Night and here come the tears. I just can't control it. I have no control over my emotions and I fear I will not be able to sit through Silent Night anytime soon. It's not that I in any way compare my son to baby Jesus, it's just the soft, somber, reflective tone of the hymn and the first verse which stirs me up. Even as I type, my eyes well up. Again.

Silent night, holy night
All is calm and all is bright
Round yon virgin mother and child
Holy infant so tender and mild
Sleep in heavenly peace
Sleep in heavenly peace

At this moment, it reminds me of Cooper's passing and not the birth of Jesus. It scares me that I felt like I had pulled myself together for awhile and now, suddenly, it feels as if I'm falling apart all over again.

This would be the point where I reason with myself and try to balance my emotions with logic. The reality, yes, Cooper would have been 3 1/2, but not like the other children who were running around tonight. Cooper could not walk, or talk and he would not ever have had that ability. He had a progressive disease which does get worse over time, not better. Cooper died peacefully and I was ready to let him go, it was time, but that doesn't make me miss him any less. It's been one year, and I have to remind myself that it has ONLY been one year. There have been so many positive things that came from Cooper's life. I try so hard to focus on the good stuff and most of the time I feel like I do a pretty good job of it. Tonight is just one of those nights.

Last year my husband and I didn't "do" Christmas. We did put up the tree and our stockings, but we didn't go crazy with decorations. We didn't buy gifts or even go to either of our families homes. Instead, we both took some time off and put together a puzzle of the beach because it reminded us of our last trip with Cooper. I'm sure it sounds lame, but it was what worked for us. Christmas is a lot harder this year than I expected it to be. It's hard to be out there finding a way to be okay everyday. It's exhausting.

Sandscript

I love to write. It helps me release the adrenalin born with a new thought. I suppose writing in the sand has become my own variation of message in a bottle. I'm able to let it out and let it go.

The last trip we took with Cooper was to the beach in celebration of his second birthday. On the last day of our trip David, Cooper and I took pictures of our feet in the sand; our little family of three. We wrote Cooper's name in the sand and said goodbye to the beach. It was later that day when we arrived home, not yet unpacked, Cooper turned shades of blue all the way down to his belly button. He stopped breathing for five minutes. It was terrifying and we thought he had earned his wings at that very moment. I started to cry, holding him in the rocking chair with David kneeling beside us. Cooper took in a giant gasp and started to breathe again on his own. He stayed with us for eight more days. In a quiet moment of retreat, David, Cooper and I were swinging under the tree in our backyard. It was there that Cooper peacefully took his last breath.













Writing Cooper's name in the sand has stuck with me. Perhaps that day was a bridge connecting one chapter to another. Something we did only once together, yet a way to continue to remember. If I'm holding onto something, I feel like I can write it in the sand and let the waves literally wash it way. The waves, symbolic messengers that will carry my thoughts to the point where the water meets the sky.


I have been fortunate to visit the beach a few times since then, but never put the messages together until today.  By starting with Cooper's name it's much like the beginning of a letter, waiting to be written.

Quiet Celebration

In anticipation of Cooper's 3rd Birthday and the 1st anniversary of earning his wings, I was fortunate to be granted a few weeks off work. We headed for the solace of the sand, the waves, the breeze, and the fish. David and I spent Cooper's birthday in Cabo, and went on a snorkeling adventure. We visited the place where the Sea of Cortez meets the Pacific Ocean, saw manta rays, a guitar shark, dolphins, held a few starfish and swam with hundreds of fluorescent fish. It feels weird to call it a "celebration" without Cooper here to actually be turning 3. We wrote Cooper a birthday message in the sand which quickly washed away by the gianormous crashing waves, as if the ocean were the messenger. Our adventure seemed more reflective of the things reminding us of our little boy, a quiet celebration, and that felt good.





Today has been a year, one whole year, since Cooper earned his angel wings. It was hard to sleep last night just thinking of how different things were on this day, down to the hours. Images of what we were doing the night before he died drift in and out of my mind; David, Cooper, and I had all taken up camp in our living room sleeping together in shifts on the hide-a-bed because it was easier to access the oxygen concentrator and the kitchen for mixing meds. It's still all very surreal. We choose to focus the good times, and the happy moments, so today is especially hard because it's the day our light went out.
It will be a hard day, but I know we will get through it. These are the memories that hurt, yet they are the memories that compel us to live each day to the fullest, for Cooper.

A full moon every night. Goodnight Moon, Goodnight Cooper

Peace & Wonder

Approaching One Year

It is only the beginning of June, and I'm sure these next two months will bring out the emotions in all of us. May was rough enough on it's own and I must say that I was glad to see the month come to an end. I expected that the one year anniversaries would be hard, but I didn't expect to feel knocked off my feet. It's not like we didn't know it was coming, yet the lull wasn't long enough between waves to stand back up. Every week in May revealed a giant waving red flag reminding us that Cooper was gone.

May is a pretty rough month for us. It has been two years since Cooper was diagnosed with GM1 and as much as I'd like to, I will never forget that day. Last year we held the first ever Cooper's Quest event and it was the only one Cooper would be alive for. One year ago, on Memorial Day, was the last time we heard Cooper laugh out loud. I think that because laughter as a first was so significant, it makes the last time much more poignant. It's one of my most favorite and coveted memories, to think Cooper so giggly over silliest sounds and noises. He would laugh so hard pausing only long enough for you to do it again and again creating a never ending cycle of laughter.

Oh month of May
You burn, you sting, you left a scar.  

Diagnosis Day lay stagnant,
within these walls of May.  

Two Mother's Days I had with you,
and now there are no more.  

A founding quest amongst these Days,
bittersweet memories.  

Memorial Day on summer breeze, a smile, a laugh, the last of these. 

All these memories are still so close to the surface and I find myself still trying to obtain that elusive {balance}. A way to grieve and the space to feel sad while relishing the joy he brought to our lives. I still try to live life to the fullest even in his absence, one of the top lessons learned from my little one. Most days the good memories take over and I find myself remembering laughs, and hugs, a family surrounded in love.

Memory Quilt

We received a beautiful memory quilt on Saturday from Over the Top Quilting and the timing could not have been more perfect! We will be moving the week following Mother's Day and I have been really apprehensive about packing up Cooper's room.





It will feel so strange to live in a new place that Cooper never knew, but it doesn't feel right to put his room back together in a new place either. There were certain pieces of clothing and bedding that were just so Cooper and I couldn't imagine passing them on to someone else. Taking those pieces and turning them into a quilt has kind of created an adult size security blanket. I can't stop touching the blocks or running my fingers over all of the loopty-loos! The whimsical stitching reminds me of a roller-coaster, which is more than fitting. When I'm all snuggled up it almost feels like I'm just hanging out in his room.

I think that all quilts tell a story and this one certainly doesn't lack in content as it was created from Cooper's t-shirts, onesies, socks, diaper covers, his bath towels, sheets, crib skirt, and even the dragonflies off of his baby mobile. Chris and Susan handled Cooper's things with such respect and care, and I was so touched by their genuine interest in his life. They have done a remarkable job! As I wrap myself up in memories so many different things seemingly jump off the quilt... of course there are the obvious things like where we went or what we experienced, but there are also things that no one else would know like how many different brands of shirts we had to try before finding one with a big enough neck hole to fit over his head! There's the mobile that I just had to have for Cooper's room which wouldn't you know, was backordered. It finally arrived in the mail two days before Cooper was born. All of these little things bring on the happy tears, laughter, the warm and fuzzies and memories that will forever be a part of us.

Chris and Susan blog about the stories behind the quilts they make. They recently posted more pictures and a bit about the creation that has become Cooper's Quilt.

Nostalgia

January 8th marked six months since Cooper has been gone. In my nostalgia I started flipping through pictures and was honestly shocked at how fast everything changed. Some days it feels as if 10 years have passed me by and I'm still trying to figure out what happened during all that time. This picture of our happy little boy was taken January 2009, just one year ago. He was 18 months old; eating gourmet purees by mouth, smiling, laughing, and cooing. He was so expressive and still had the ability to wave his arms and kick his feet when he was excited. His eyes were so bright. He could still see and turn his head toward things of interest. If someone would have asked at the time this picture was taken ... I never would have guessed that within a month Cooper would have lost the ability to swallow; that the NG tube feedings, respiratory issues, and seizures would follow so closely or he would be gone 6 months later.  Looking at these pictures from one year ago, I am reminded of all the little things, laying outside under the trees, dancing to silly music, splashing in the bath, bouncing and marching around the house, the hours spent rocking in the rocking chair. He loved to be snuggled up close to me in the sling/carrier while I vacuumed the house and I think about that every time I pull out the vacuum. I could go on and on, but my ultimate thought is that the good memories outweigh the bad ones by a mile and short of a cure, I wouldn't change a minute of it for anything.

Over the weekend we went to visit Cooper's spot, as we so often do. It always feels good to just go and sit for a little while and listen to the creek. I have been trying to sort through the "storage room" where we have all of Cooper's therapeutic equipment along with the baby gear, car seats, strollers, etc. Last week we emptied Cooper's drawers and put all of his clothes in storage bins. I though it would be a lot harder than it was, so I guess that means it was time. I kind of rationalized with myself (big surprise!) that he would have outgrown them by now anyway. Only now the drawers will stay empty instead of being replenished with the next size up.

Puzzled

A Christmas wish for peace, for the pain to lessen, and be filled with happy memories. We have opted out of a celebration this year, no decorations, no family gatherings, no gifts. Just the two of us, David and I, working a puzzle in unison, neither feeling the need to talk, appreciating the silent reprieve which allows us to grieve together. I wish there was such as thing as true bereavement leave. I'm not talking about taking a day or week off work to plan a service. I'm thinking more like the three months or more someone can take off work after having a baby. I would love nothing more than to hide out in a remote cabin in the mountains somewhere far away, to escape the forward movement of time for awhile, returning when I'm ready not when someone says my time has run out.



Signs Everywhere

Wednesday was hard, harder than most days. I have yet to find the word which adequately describes the emptiness. I park the car and automatically open the back door, reaching for Cooper, but he isn't there. To take Abbi for a walk leaves my hands searching for the stroller and Cooper's face looking back at me. The day is no longer full of therapy, floor time, meds and feedings. We still say goodnight to Cooper every night, but there is no more bath or bedtime routine. Each day is just another day. 

For some crazy reason I thought it would feel better, maybe even good, to put Cooper's crib back in his room. The DME company came to pick up all of the borrowed medical equipment on Tuesday and I wanted his room to feel like it did before the gm1 became more intense. Once we had the twin beds back in the guest room, the crib in Cooper's room and the doors back on their hinges, I knew it was wrong. I was thankful for David's patience and that he just quietly helped me put it back the way Cooper left it. 
This week I tried out an adult horseback riding class. For one hour it felt good to focus on the movements of the horse and let go of my thoughts. On my way home I was flooded with memories of Cooper riding with me on his first birthday and the look of content and enjoyment on his face when riding (hippotherapy) with Mrs Jennifer. 

This morning I woke up longing for morning time snuggles and the smell of last night's bath. What I wouldn't give to feel the weight of his body in my arms and his head on my chest. 

Little reminders of Cooper are everywhere... the bluejay feather we found on a walk, the butterflies that tease each other above our swing, the dragonfly that welcomed me home from the grocery store... maybe it's just me missing him so badly which makes me hold onto this feeling that everything has a deeper meaning. It certainly helps me get through the day to think so, even if it sounds a little crazy. Maybe it's all perspective, seeing what we want to see, but at times those little reminders make me smile so I'm not going to analyze it.

The other day I went to visit Cooper at the Gardens and just as I was sitting down a little frog popped up! It surprised me a little but then it just sat with me as if to say don't worry, he's never alone. Cooper's little frog was still there when I left.



Baby Book Remodel

I am often asked "how are you doing?," and occasionally my stock answer doesn't cut it because that question is followed by "no, how are you Really doing?" So, here goes...

I was looking around Cooper's room while he was getting a vest treatment and found myself staring at his baby book. The realization hit me that I haven't picked it up or looked at it since the day he was diagnosed. I can't believe it's been almost a year. How can one little book bring back so much? It was all part of planning for our baby to be. I remember how excited I was when we found it... the perfect book to document our adventures... full of milestones, firsts, favorites and room for lots of pictures. It even matched the theme of his room; a room decorated with bugs and trees, bold classic colors in the likeness of Eric Carle and all things boy.





When we created his room I imagined him climbing trees, camping out, fishing with David... I could just picture it. I picked up his baby book this morning and started flipping through it. His NICU pictures are there and the pages signed by all the nurses who took care of him in the moments after he was born. His tiny little footprints and the festive name tag that claimed his spot in the nursery. Pictures of putting Cooper in the car seat for our long awaited trip home from the hospital. The story of 'Our first night home'... we had bad storms and tornadoes in the area... I called the NICU and asked if we could come back! After that page I'm at a loss. It's blank. The next section is full of milestones and firsts... things like rolled over, held a bottle, sat up, waved, clapped, crawled. I think it's true that grieving begins the day you get the diagnosis. For us, for Cooper, these pages are somewhat a reflection of our reality and they will never be completed.


There is one page near the end of the book titled 'Keeping You Healthy' which leaves a two line space for First doctor visit, Immunizations and Tests, Illnesses and Mishaps. I don't really know what to do with this section either because there aren't enough pages. I am seriously thinking about sitting down with my label maker and creating new titles because we still have adventures and milestones, even if they aren't the ones we imagined.