allysonbrown.com – Riding the Wave

Wes at Gasworks Park on Father’s Day 2012

Today is the three-month mark of  our sweet Hannah’s passing.  I miss our girl every moment of every day.

I’m trying to devote a few days a week to writing, carving out focused time at the computer.  Yesterday I felt compelled to explore how to take a story that takes hours to tell, and find its core.  What would it be like if you only had 5 minutes to tell the story?  What about 1 minute?

On Bainbridge Island there is a non-profit called Field’s End that serves the writers’ community.  I have admired their program from afar, not ever feeling confident or ready to explore a class or to attend an event.  I read that they are doing an oral storytelling evening in July.  The theme?  Away from Home.  The challenge?  Tell a story in 5-minutes, no notes, no cheat sheets.  The model they are using is from The Moth, a non-profit in New York where oral storytelling is taken to the stage and to radio.

After thinking about this for weeks, I finally took a stab at this challenge.  I spent the day writing – long essays, even a fairy tale version.  It felt great, and while I am likely not going to set foot on a stage anytime soon to orally tell this story, I love how it came together and how it brought me to the essence of our girl.

I was reminded of a quote by Joseph Campbell, “We must be willing to let go of the life we planned so as to have the life that is waiting for us.”

Our life lessons from Hannah.

I’m grateful for so many friends reaching out to me. Over time, I look forward to sitting across the table from you – really catching up.  I savor each moment.

After lunch today with a good friend at one of my favorite cafes, I was thinking of our talk and listening to music on my way home.  I heard the song “Thankful” by Rumer (from the album Seasons of my Soul),  and replayed it again as I sat in front of our house.

Greg’s family has done a bit of genealogy along the Vail side (Greg’s mom Marilyn’s maiden name, and the inspiration for our Hannah’s middle name).  Many generations back, there was a woman in the Vail family named “Thankful Barnum”.  The part of her name that we were always drawn to was the “Barnum”.  She was the sister of P.T. Barnum from the Barnum and Bailey Circus.  We thought the name “Thankful” such a curious one -not one you hear anymore.  However just like other classic names of virtue like Hope, Grace and Faith that continue to be popular today, I understand completely why a parent would name their daughter Thankful.

I’m thankful in so many ways.

Thankful (Rumer – Seasons of my Soul)

I haven’t written for a while.  These past few weeks, I’ve been struggling.  I’ve been so sad, missing Hannah.  More honestly, missing the possibility of the healthy Hannah I still see in my dreams.  And equally fierce, I’ve been struggling with control issues.

 I’ve always had strong opinions – a keen sense of right and wrong.  In the Enneagram test of personality types, I’m the quintessential Type 1 (the Perfectionist).  As it says in the link to this personality type,

 You have a strong ‘internal critic’ that reminds you of what you should and shouldn’t do. At times, you can be judgmental and critical of others, telling them what you think is right. You behave this way because you want to help people avoid mistakes. You believe that there is only one way to do things and that is the right way. As a perfectionist, you feel that if something is worth doing, it is worth doing right. As a result, you are only satisfied with what appeals to your strong sense of what is moral. Idealistic, you naturally wish to educate others to help them improve themselves.

 This personality type has served me well in so much of my life.  It made me a diligent student; it created the drive to work hard in my career; most recently, it provided me the strength and courage to partner with Greg as Hannah’s advocate through all the medical decisions, and gave me a strong sense to listen to her and focus on her comfort. 

 At the same time, this inner compass of mine runs contrary to all that has happened in our lives.  I couldn’t get Hannah better and her loss is so profound. The result now is a painfully deep need to control the things around me.  As I lose control, I am trying to regain some sense of doing things right by directing others.  The fact is it isn’t working.

 I was talking with a good friend this weekend that lost a baby many years ago.  She said that the first year was really tender.  She didn’t even come out of the fog until two or three months after the loss.  What she helped me realize is that we are just entering this grief.  The storms will come and go, and we’ll continue to get tossed by the waves.  Control isn’t something that can happen during the storm.  Hanging on, being patient – once again these are the lessons that are facing me.

 So, I sit here today, focusing on being patient with myself.  Remembering that there isn’t one right way to do anything, and that I don’t have to worry myself with these small things.  Letting go is actually providing me with control.  And I will once again surrender myself to the waves of grief that continue to come.

Wes created this image of the solo kayaker riding the waves this winter.  It hangs in our stairwell, right next to a beautiful photo of Hannah as a baby, and lots of other photos of our family. 

As I am writing this post, I am viewing this image with new eyes. 

The wisdom of a six-year-old.

Music is powerful.  I think more than any trigger, a song can bring me to my knees in grief.  I don’t remember this sense being so powerful in any other time in my life.  Today, I turned on my iPod and didn’t recognize the song that came up in the shuffle.  I hit play, and the guitar started.  This is Hannah’s Song, written by the nonprofit “Songs of Love.”  My heart breaks when I hear it…oh, Hannah did have beautiful blue eyes.  01 Hannah McNutt – Songs of Love

 We had a wonderful Mother’s Day yesterday.  Wes and Greg took me to brunch at Ray’s Boathouse, a restaurant perched on the edge of Puget Sound looking toward Bainbridge Island.  We had a fabulous table, right on the water in the corner.  We lingered over our meal, enjoying the unseasonably warm weather.

 After brunch, we went for a drive up the beach to a park called Golden Gardens.  We are continuing to work with the parks district to determine where to put Hannah’s Seattle bench.  One option is on the beach at this park.  It appeared most of Seattle had the same idea to go to the beach.  We decided on the spot that this park wasn’t the fit for her.  Too crowded, too exposed.

 We drove down to Discovery Park and confirmed that the beach down there is the perfect spot.  Unfortunately the parks district has a restriction at Discovery Park.  The good news is that we can have a bench in the location we love.  The bad news is that we can’t have a plaque or marker in honor of Hannah.  Since our hope is to have a place to snuggle on the beach and look west to Bainbridge, we decided that the bench was most important.

Wes and his planes at Cowan Park

In the afternoon, Wes and I planted some flowers, and painted and assembled little balsam wood planes.  We spent the rest of the afternoon flying our planes.  We had such a great time at home and at the park.  It was wonderful and filled with laughter.  A fabulous sunset completed a beautiful day.

 As I was getting ready to go to bed, I turned on NPR in the bathroom.  “Sound Opinion” was on – one of my favorite weekly shows where they highlight music.  The guys are usually really funny, and I learn new music.  Last night, the feature was on mothers.  I picked it up toward the end, and they were just introducing a little known song, “This Woman’s Work” by Kate Bush.

 The song was created for a John Hughes movie in the ‘80s, “She’s Having a Baby.”  I remember the movie vaguely – mostly Kevin Bacon and his crazy hair.  The song apparently comes in at the end of the film as the wife struggles with child birth.  It is a powerful, strong song, and hit me hard last night.  After a day of joy, I was once again leveled to my knees in sadness.  The ’80s music video features Kate and brings me back to such a long time ago.

 This grief I feel day after day – it is beyond what I ever imagined.  It never seems to creep in…it is always a huge, unexpected wave that knocks me off my feet, usually just for a minute.  But when it does – it is a total and overwhelming wipe out.  The wave has such power.

 My final thought today is Wes’ song.  The songwriter and singer is Sheira Brayer.  We love her.  She spent so much time with us on the phone last February, asking specific questions about our guy.  She captured him.  This song puts a smile on my face. 01 Wes McNutt – Song of Love 2012

Mother's Day Sunset in Seattle - 2012

 Today, I’m feeling inspired.  I just met with Jan, the Executive Director of the Medic One Foundation, and came away certain that telling Hannah’s story will help Medic One – with whom we credit so much of our time with Hannah.  I realized in my conversation today that had Medic One trained folks (including the medics in Seattle, on Bainbridge and Airlift Northwest) not been so highly skilled, Hannah may not have lived past her first six weeks, when we had her scary and intense first bought with metabolic issues and our first flight to Seattle Children’s Hospital.

When I came home from my coffee with Jan, I found a couple of emails that included a link to a video that has gone viral – created by the Seattle Children’s team and patients on the hemoncology unit.  Wow.  After a good cry, I realize that I miss Children’s.  I miss the inspiring people with whom we spent so much time – the nurses and doctors, and fellow families on a similar journey of hope.  Ah, that hope never goes away.

Yesterday I was rummaging through a drawer and found a greeting card I purchased months ago.  The image is by an artist from Portland, OR, Kelly Rae Roberts, who we first discovered while we were in the NICU at Swedish Hospital, and then again at Children’s.

  I learned last night from her website that she was a social worker who had a passion for art.  After years of thinking about it, she finally jumped into making art.  Now her work is licensed and sold everywhere (including Trader Joe’s where I found this card).  What I love about her is that her message is getting out, too.  I find courage in her art – and I see our sweet Hannah in each image, our raven haired beauty with so much purpose.  And I am inspired.  I am learning how to listen to my inner voice.

I will continue to tell our story as it unfolds.  I’m hopeful that we may help other families and caregivers, and support the organizations that are changing lives, literally every day.  I learned from Jan today about a woman that was my age and had a massive heart attack while driving.  She died, and the medics from Seattle were able to revive her with CPR.  While timing and other things were in play, I think she survived because of their incredible skill.  Every day when I hear the sirens and know an aid car is rushing to help, I think of Hannah and I feel grateful.  We never would have known all of these amazing men and women in our community that are saving lives each day had it not been for her.

Each day, I am thankful that our family is close.  Not only do we live within 600 miles of our immediate family (with most living within 200 miles), but we are also close in deeper ways.

Wes is so lucky to have grandparents that he really knows.  He sees them so much, there is never a time that he has to reconnect or get through that awkward phase of remembering.  Wes has deep connections with Grandma Marilyn, Grandpa, and Grandma Anne.

He can be silly or sad, goofy or mad.  No matter his mood, he knows he is loved and cared for by his army – our family.  Add in my grandma Ethel (“Grammy Animals”), auntie Gigi, aunts and uncles and all of his cousins, and we really do have a small army.

Grandpa is the coach of Wes’ t-ball team, the NE Seattle Little League Godzillas.  We love having him come over at least once a week for games, and it brings back such fond memories of watching my dad coach my sister Angela’s teams throughout my childhood.  The kids love him, and you can tell he loves them right back.  We are so thankful to have him in our lives in such a rich way.

I was thinking of May Day today.  Not only is it the birthday of my grandpa Elmo (Ethel’s husband) who would have been 91, but also one of the days of the year that I recall so fondly from my childhood.  As a very little girl, I remember all of the kids in our neighborhood would use construction paper and shape them into cones to make May Baskets.  We would draw on them, or cut out shapes and glue designs on the cones.  We would then go out into our yard and pick flowers – usually lilacs – and fill them up.  When we had all of our bouquets, we would sneak to our neighbors’ porches.  Most of the neighbors where we grew up in Bremerton were retired – like my grandparents, most were WWII vets and their wives.  We would place the flowers on the porch, ring the doorbell, and run and hide.  It was such fun to see the neighbors open their doors and watch the delight on their faces as they found the flowers.

On this May Day, I want to send our thanks to Marilyn.  I wish we could blink our eyes and arrive on her porch in Salem, and drop off a May Basket.  Marilyn has been such a stable force in our lives, especially since Hannah arrived.  She was there – through countless days, weeks and months of uncertainty – and provided Wes with a constant sense of well being and love.

Hannah and Grandma Yellow Trucks at Gasworks Park - July, 2011

As I think about Hannah’s 16-months with us, not a memory goes by without a role that Marilyn played.  She gave her all to us, and we are forever grateful.  Wes still asks almost every day when Grandma Yellow Trucks is coming.  He knows that she has her life in Oregon, and he isn’t worked up that she can’t be with us all of the time.  But he loves her – oh, how he loves her – and knows that she loves him in return.

Thank you, Marilyn.  This May Basket is for you. And you, too, dad.

The past few weeks reminded me of how amazing nature is, and truly, what a wonder. I connected both figuratively and literally.

A few weeks ago, I put my very unfit self onto my bicycle and rode from our home down to the ferry terminal. It is about 6 miles, with a few hills and as I later learned, a lot of construction along the way. The ride felt great. While I am a far cry from the fit self that took spinning classes at least 3 times a week through most of my pregnancy with Hannah, at least I felt like I could complete the ride. My plan was to bike from our home to the 11:25 AM ferry, then bike over to Rockaway Beach Park to meet Mike from the Bainbridge Parks Department to finalize the placement of Hannah’s bench. It was a beautiful morning, with scattered clouds. The weather forecast said sun with showers, but I didn’t see any dark clouds.

I arrived at the ferry at 11:23:10 – 10 seconds AFTER the ferry worker would allow me to board the ferry. They started a 2 minute rule a number of years ago. No boarding the ferry it you are within 2 minutes of sailing time. I tried to negotiate, but that didn’t work. So, I sat in the sun and ate my lunch over the next hour. I could see dark clouds over the island coming and going, but had wonderful sun the full hour in Seattle.

I hopped on the next ferry and rode to the park. It was quite a bit further than I remember – ugh. I definitely felt the bike ride by then. The roads were wet on Bainbridge, but I continued to have sunny weather. When I arrived at the park, my friend Marla met me. Her first question – “oh my gosh, did you get caught in the downpour?” Ah, thanks to the missed ferry, I was on the dry side of the sound, soaking in the sun, not the rain. Thank you, nature!

Hannah's Bench Location at Rockaway Beach, Bainbridge Island

We met the parks department team and found the best place for the bench. It will be situated over a set of amazing tide pools, with a 180-degree view from Wing Point around to Restoration Point. You can see the ferry, Discovery Park (where the other bench will be), and all of Seattle. Awesome!

When we approached Mike from the parks department, his first comment was, “oh, did you see that little hummingbird? It came right up here with it’s little red head.” Ah, I like to think that sweet Hannah was paying a visit and approved our location.

The ride back to the ferry felt a lot more difficult – while it didn’t seem down hill getting to the park, it sure felt like a lot of up hills getting back to the ferry. I just kept thinking, “this is good for me…this is really good for me…” And the last few hills up to Winslow are ones that humility forbids walking, so I slowly made my way on the bike. Thankfully my aunt Gigi was coming through Seattle when my ferry was arriving and offered to drive me back home – just in time for the downpour in Seattle.

Fast forward a few days. Wes and I decided to take a mom/son road trip for spring break. Seattle schools have a really late break this year, starting on 4/16. Wes and I decided to visit family on the west coast, starting with Grandma in Salem, then continuing on through the Redwood forest in CA to auntie Angie and uncle Karl’s in Redding.

We left on Sunday and had a nice drive to Salem, stopping in Portland to have a taste of our friend Kim’s ice cream. Kim founded Salt & Straw Ice Cream (www.saltandstraw.com) in SE Portland, an independent shop that offers the most incredible flavor combinations. It was so great to see her, and to eat nature’s bounty. I had a lemon and Oregon honey scoop that was delicious. The line for ice cream traveled out the shop door and around the corner – I totally understand why. What an amazing way to bring the flavors of nature together in heavenly cream. Yum!

We spent the rest of the afternoon playing at grandma’s with Jack the dog, enjoying some sun and fun. Then Monday we packed up the car and headed south.

As is usually the case, getting North/South on I-5 is usually pretty easy. Getting East/West to the coast is usually pretty hard. Winding roads always make for long days. This ride was no exception. Thankfully Wes is a fantastic passenger – he didn’t inherit the cars-sickness gene from both me and Greg. We arrived at our destination – Crescent City, CA (the Best Western with the best treat – an indoor pool). We played in the pool and hot tub and relaxed for the evening, anticipating our journey to the Redwood Forest.

This morning, we got up early, had breakfast, and were the first people at the ranger station to get info on how to navigate the vast forest options along the Northern California coast. With our plan in place, Wes and I hopped in the car and took off.

I think I saw the Redwood forest with my parents when I was really little, but honestly, I don’t remember. I really wanted to take this in, and get to experience it with Wes – even if it was just for a day.

The "drive-thru" tree in Klamath, CA

Wes, Paul Bunyan and Babe, the Big Blue Ox in Klamath, CA

We started out by visiting something I do remember – the GIANT statue of Paul Bunyan and his big blue ox, Babe, just outside of Crescent City. Next stop, the tree we can drive through (courtesy of a family with a locked box in a welcome shelter on the side of the road where you leave your $5 to visit). From the onset, I felt grateful to the Seattle schools for choosing such a late spring break – there was NO ONE here! The odd timing, coupled with 50-degree weather and drizzle, made for good roads and no company anywhere we went. Wes and I drove through the tree about 6 times – each time amazed that a tree could grow so big, accommodating a car, but also still feel so solid and alive.

Next stop was the Lady Bird Johnson Grove deep in the Redwood Forest. Wes and I spent a few hours hiking the interpretive trail, wondering at banana slugs, ferns, the growth, death and rebirth of the forest and the magnificent Redwood trees. What an amazing display of nature. To walk among 2,000 year old trees – we just couldn’t believe it. Again, we were alone on our journey – crossing paths with just one other family as we strolled among the giants. We climbed in burned out hollows, felt the bark and found the cones of the trees, and continued to be awed by the experience. We laughed at the cones – why does the Ponderosa Pine have a HUGE pine cone, but the Redwood have one the size of an olive? It seemed so contrary, and yet nature cares for itself again.

Lady Bird Johnson Grove - Redwood Forest

We heard bird song throughout the forest, and thought and talked a lot about Hannah. She is alway in thought – just visible in everything we experience. Our sweet girl.

We arrived at Angie and Karl’s around 4:00, ready for a snack in the back yard. It was a warm 65-degrees in Redding, and as we stepped outside to sit and rest, we saw the first of what would be many hummingbird sightings tonight. So sweet. Then the sun-tinged clouds with sunset, making for a perfect close to the day of wonders of nature.

Grateful for the opportunity to experience this – together with my boy. Knowing that the wonders of nature are already touching him in ways that I don’t think I appreciated until I was an adult.

Cousins - Spring Break 2012 - Redding, CA

I wrote a post while Wes and I were on our spring break road trip. While away, we were able to let go of a lot of our sadness, and focus on the fun of being on the road, seeing amazing natural wonders, and spending quality time with family. It was awesome. I didn’t send the post, because I couldn’t get the photos to insert properly using my ipad. I figured I’d wait until I got home, and then use our PC to do the work.

We were so glad to see Greg, and the house looked better than ever – clean, fresh, inviting. We had sun filtering in all the windows (and the blossoming trees were visible from every window), and Greg had everything spotless. Anna had spent the week helping us find homes for a lot of Hannah’s baby items, so the clutter was reduced to a minimum. It should have felt great. But it didn’t. Wes and I both felt sad, and tentatively walked into the house.

Waiting for us was a small pile of mail, including the book that we had made of Hannah’s Caringbridge, as well as a package from an organization called, “Songs of Love”. I was thrilled – this was a nonprofit that we connected to through Hospice, that creates custom songs for loved ones that are sick. We were able to have two songs written and recorded – one for Wes and one for Hannah. We began this process way back in January, and I talked to the woman who would write Wes’ song back in February. Sheira Brayer is a delightful woman who lives in the town of Amenity, NY. She has had a successful children’s PBS show in New England, and is a mom and songwriter. We talked for a long time in February, about Wes and Hannah, about our family. She had her own family health issues that hit her in March, so she emailed us early in the month to say that the song would be delayed. We emailed back and forth after Hannah passed away.

I opened the package with the CDs, thrilled to have them and not thinking about the fact that it might make us even sadder. The minute the guitar started, Wes said, “mama, turn it off!” I did, and we both burst into tears. We went into the play room, sat on the love seat and cried. I realized later that evening when I was talking with Greg that it was the one month anniversary of Hannah’s death. We have yet to listen to the CDs – we will in the coming days or weeks. I’ll link them when we finally listen – I have the lyrics and know that both songs are really beautiful.

We feel Hannah everywhere, but most especially when we look out the skylight in the upstairs bedroom that was hers before we moved her crib to the family room the final month. The skylight is beautiful – the only natural light in this little room, but so large that you see the top of a giant Douglas Fir tree in our neighbors yard, the sunset to the west, the clouds, and last night – a full, bright sky of stars.

Greg and I talked a lot last night. We miss Hannah, and continue to miss the possibility of the healthy child that we had so hoped we would have. We still linger on that sense of hope, the “what if?” that we held on to, even as we accepted her body’s decline. We do not regret our course of action for her – we feel we really listened to her. I will hold tight forever to that amazing knowing that I will always have, from the experience of graciously holding her as she passed away. I’ve never known anything to be so right.

Now my work begins. I will start exploring what life looks like in this post-Hannah life. My first deep dive will be seeing what and where Hannah’s story might make a difference. I was in a bookstore this weekend in Salem, OR, browsing while I had a few precious moments of quiet. I picked up a memoir by the journalist Ian Brown called “the Boy in the Moon,” about his journey with his son who has a degenerative genetic condition different than Hannah’s in many ways, but also with some similarities including profound disabilities. I wonder if there are many memoirs written by families with children like ours that have chosen a different path? A different outcome?  Would it be a story that might be worth telling? And if so, how do you do it – what does it look like?

Hannah’s neurologist Dr. McDaniel sent us a note about a talk she heard a few weeks ago from a visiting doctor, Chris Feudtner, MD, PhD, MPH,  from the Children’s Hospital of Pennsylvania.  He is focused on palliative care now, and his Grand Rounds talk at Seattle Children’s was focused on his work that was summarized in a recent journal article (Arch Pediatr Adolesc Med. 2010;164(9):831-839). I was moved by his findings – which so fit our situation with Hannah. As he stated in his paper,

In other words, the more hopeful a parent, the more likely they are to provide orders to the team to limit life-sustaining intervention, with a focus to “prevent suffering and promote comfort, quality of life, and dignity”.

The question Greg and I held so dear over the past year was “what is right for Hannah?” We know that it is not the same for any two children, and there is truly no one right way. For us, the path of listening and enacting LOI orders felt right, and I hope that my future work may enlighten others that are in this same, awful place of having to sit in the question of what to do for their beloved child.

How might my past direct my future?  I’m looking forwarding to exploring.

I’ll upload the photos from “Wes and Mom Spring Break Road Trip 2012” to the Redwood forest later this week. What an awesome place to sit in wonder and really feel the past among 2,000 year old trees.