allysonbrown.com – Riding the Wave

Three years ago today, Hannah passed away in my arms at sunset.  With every milestone for her, I’m in awe of both how long ago she passed, and also how recent it was.  I realize now that time is a very elusive thing…we think we have a grasp of past, present and future, and yet we really don’t.  Our minds have ways of managing things for us.

This is our first time not being home for this milestone event.  We’re on a different island, far across the Pacific.  And yet we’re hoping to hold some of our dear, sweet rituals for her, and for us.  This morning I went on a super long walk, listening to my favorite music while I thought about the past 3 years – the people that have entered our lives, in many ways because of our sweet, sweet baby Hannah.

It seemed that my Pandora Station knew EXACTLY what to play – each song felt like it was talking to me.  The first song that came on as I started my walk was a medley of Blackbird and Yesterday by the Beatles.  Two songs that I listened to countless times during Hannah’s life.  I reached the end of the beach, where the lava rock takes over and you can cautiously pick your way across the tide pools.  I started going on the rocks, and then stopped in my tracks when I looked up and saw a dad and his daughter at the edge of the pools, looking out to the sea.  She was likely about 4 or 5, exactly Hannah’s age.  She reached up and grabbed her dad’s hand as they looked down into the tide pool below the rock they were standing on.  I took a few photos, enchanted by the sweet moment, realizing what life could have been like if our sweet girl had been in a healthy body.  And I felt the grace of getting to have our big guy with Greg at the pool, and a wonderful baby minutes away taking a nap, who will wake and play and delight in everything around her.

I stepped off of the rocks, and continued my walk down the beach, stopping at a secluded area of sand to write Hannah’s name and send her my love.  Just as quickly as I’d written it, a big wave came up and wiped it away – isn’t that life!?!

As I walked, I listened to lyrics of many songs in ways that I rarely do these days. The song that stood out for me – which shocks me – is Pompeii by Bastille.  I think of this as an uplifting, happy song.  But sung by Jasmine Thompson, it is hauntingly beautiful and meaningful.

Listen to her version on the link here.  POMPEII

I was left to my own devices
Many days fell away with nothing to show

And the walls kept tumbling down
In the city that we love
Great clouds roll over the hills
Bringing darkness from above

But if you close your eyes,
Does it almost feel like
Nothing changed at all?
And if you close your eyes,
Does it almost feel like
You’ve been here before?
How am I gonna be an optimist about this?
How am I gonna be an optimist about this?

We were caught up and lost in all of our vices
In your pose as the dust settles around us

And the walls kept tumbling down
In the city that we love
Great clouds roll over the hills
Bringing darkness from above

But if you close your eyes,
Does it almost feel like
Nothing changed at all?
And if you close your eyes,
Does it almost feel like
You’ve been here before?
How am I gonna be an optimist about this?
How am I gonna be an optimist about this?

Oh where do we begin?
The rubble or our sins?
Oh where do we begin?
The rubble or our sins?

And the walls kept tumbling down
In the city that we love
Great clouds roll over the hills
Bringing darkness from above

But if you close your eyes,
Does it almost feel like
Nothing changed at all?
And if you close your eyes,
Does it almost feel like
You’ve been here before?
How am I gonna be an optimist about this?
How am I gonna be an optimist about this?

If you close your eyes, does it almost feel like nothing changed at all?

In so many ways, it does feel like we’ve moved on – life continues, we bring new people in.  And yet we are forever changed by those moments – the ones we love and the experiences of being human.  Every single day I think of Hannah.  I thank her for her gifts to us, and I wish she could be here, living the life we’d dreamed for her as she grew in my belly.

So from this distant land, we’ll gather at sunset and send up our love and messages to her, and I know she’ll get them.  Below is the photo of sunset that graced us on the night she departed, taken by our friend John from the ferry.  Love that baby.  Here Comes the Sun.

It has been a long time since I’ve posted!  In part because I’ve been really busy – kids, work, life.  But I think more importantly, I’ve been waiting for that stirring – the rumination that I feel when it is time to write.  I also attended a yoga and writing retreat in November – and had the chance to go deep deep deep into my writing again, and found I was both exhilarated and exhausted.  I worked on a number of stories linked to my life with Hannah, and realized that the story that I feel is inside of me – the one that I most want to share if I can figure out how – is about parenting Wes through Hannah’s journey.  Taking care of the ones that are still here with us.

As I sit here today, I realize that I’ve had the urge to write, but have been hesitating.  It feel a lot like the baby book I intended to keep for Mimi (and Wes, and Hannah for that matter!) and never got around to.  I was cleaning out a rarely used cabinet in our bedroom this weekend and found the First Year Journal.  Blank.  It was sitting right alongside the Pregnancy Journal.  In this one, I put my name and the date we found out we were pregnant.  The rest of the journal?  Blank.  Hmmm.  Hoping that baby photos will suffice for the kids as they want to look back on their lives (even tho they are only on the computer at this point, too).

I guess the good news for Hannah’s short life is that I wrote a lot – Caringbridge and then this blog.  I had a place to tell her story – to tell our story – and it felt so great getting input from all of my friends about what we were experiencing.  It gave me immeasurable support, and it gave me incredible confidence.  It also helped me rekindle my love of writing and a reassurance that I am a good writer.

Well, today I’m back in the saddle of blogging.  In part because I’m feeling the stir and have a few things I’d like to get down in writing over the coming days and weeks.  And in part because I have exciting news – I’m being published AND I get to be a part of “Listen to Your Mother”!  And to top it off, a team from Seattle Children’s just published this month the journal piece about Hannah’s genetic condition.

As I’ve shared in the past, we knew from the start that Hannah was a great teacher.  My hope for her as her disease progressed was that her life would be meaningful well beyond the teaching she was giving us.  We saw the role that she played with her caregivers at Seattle Children’s and elsewhere, and we were grateful that our story – her story – would make a difference in the treatment of other babies.

Recently one of our beloved ICU doctors Jonna Clark asked if I would take part in writing an article to be published in a medical journal.  I felt honored and unsure of what role I could play in supporting this work.  Dr. Clark did such an amazing job integrating the scientific concerns of the article with the heart-full stories from my writing during Hannah’s life.  I’ll post the link to this article when it gets published in several months, but the article is focused on supporting Neurologists to partner with families to bring in palliative care earlier in the process when children have undiagnosed conditions.  The whole-family care from the palliative team can partner with the rest of the curative medical approaches to support the family, and help early on focus hope not just on cure but on comfort, too.  This is exactly the kind of teaching I hoped Hannah’s life would have.

“Listen to Your Mother” is a wonderful program that brings together women from a
variety of backgrounds to share stories of motherhood.  As they say on their website,

The mission of each LISTEN TO YOUR MOTHER production is to take the audience on a well-crafted journey that celebrates and validates mothering through giving voice to motherhood–in all of its complexity, diversity, and humor–in the form of original readings performed live on-stage by their authors.

LISTEN TO YOUR MOTHER aims to support motherhood creatively through artistic expression, and also financially–through contributions to non-profit organizations supporting families in need. Each LTYM show donates a minimum of 10% of ticket proceeds to a local cause, as well as providing the cause awareness/fund-raising opportunities.

I’m so thrilled that a piece I wrote was selected to be part of the inaugural Seattle show on Saturday, May 9.  I’ll post more information about tickets as they become available.

And finally, the amazing genetics and neurology team at Seattle Children’s Research Institute (and now other organizations as some of Hannah’s doctors have moved on) were published last week in the journal “Epilepsia”.  They featured Hannah’s case along with one other, and shared the findings about the gene variation that Hannah had, and its very rare form that cause Hannah’s condition.  My hope is that as other families struggle with undiagnosed conditions that present like Hannah’s, the medical team will be able to do this genetic test and get an answer for the family of “what is it?”.  While during those dark days of Hannah’s life we felt grateful each time we had a genetic test come back negative, I look back now and know that having a diagnosis would have let us come to terms with our impending loss earlier, and we could have focused on her comfort and the sole act of being together and loving each other without fighting to find a cure that much earlier.  I don’t understand most of the language in the article (it is definitely written for neurologists!), but I know the outcome of it being published.  And perhaps this may also be a step towards finding a cure in the future.

So, while not a lot of writing has occurred the past months, things are moving.  I’ll be better about writing in the future, and I once again remember how much I love this part of myself.

It has been a long time since I have written a post, in part because life has been so full.

As always, I can feel this churning inside when it is time to write.  It is a nagging, bubbling sense to see what might come out if I sit down and focus for a bit.

I am forever grateful for our family, and the past year of wonderful experiences with the kids.  I am aware of how lucky we are to have Mimi.  She has been such a delight for all of us.  When I see her and Wes playing, reading together, snuggling…there really isn’t anything finer in life.

I also know (as I did from the beginning) that she isn’t Hannah, and will never replace our sweet, sweet girl.

Mimi is a light that warms my heart and provides much needed illumination.  I see the world clearer because of her, and I have joy beyond measure from our family.

And yet I still have these waves hit – the grief, and heartache.  The longing for what can’t be and in some very poignant ways, the guilt of being unable to fix the situation.

The poet David Whyte is someone that I have admired since I had the opportunity to hear him read a number of years ago at IslandWood.  He uses nature as metaphor, and so beautifully captures the human spirit.  I get a Facebook feed from his site, and today he posted the poem below.  It is this grief that I feel…grief that will forever be a part of me.

I am richer because of Hannah.  I thank her every day for the gifts she gives me – the strength and confidence I have in myself because of her.  I care less about the superficial, and am kinder to myself and others.  I give myself permission to pause in ways I never would have before our lives together.

I don’t often cry anymore, but when I do, it still hits me like a wall of water – knocks me down and is unrelenting.  These waves require my full attention…there is no turning away or pushing them aside.  Sometimes I can feel them brewing, but it isn’t something I can stop when it hits.  It happened last week at a time and place that I wouldn’t have imagined and couldn’t control.  And all I can do is to be kind to myself.  Know that this is me, and I am vulnerable.

[RE-POSTING WITH A FEW EDITS AND A GREAT LINK TO A PSYCHOLOGY TODAY ARTICLE]

Wes insisted on playing soccer this spring.  We’ve done a little bit of soccer here and there – a few camps last summer, fall rec league last October.  But this is our first real touch into the world of SOCCER on Bainbridge Island – BIFC (Bainbridge Island Football Club).  This is their Spring Academy – a fun season of skills and drills and friendlies, so nothing like I hear the fall experiences are like with select teams.

Last Wednesday I went to the first friendly game day.  I wasn’t sure what to expect.  There are 8 teams of boys in the U8 group with 10 boys per team, and 4 teams of girls.  I’m still in awe that this small island can have 120+ kids from 6-8 years old playing soccer (and that doesn’t include the kids playing up in the U10!).  I get why Wes wants to be a part of this – it is an incredibly popular thing to do and the energy is high!

I knew that I’d see many familiar faces at the practices and games, but I didn’t expect to feel the emotion that I did taking all of it in.

I’m still amazed that we’ve lived on Bainbridge Island for 10 years.  We’re in the same house we found on a quick search when our home on Queen Anne sold in a day and we had to find a place fast.  A decade of life here on the island, we have so many friends and connections.

As Wes played soccer on Wednesday, a steady rain fell down on all of us committed parents on the sidelines.  I had Mimi in the stroller and she was on the edge of sleep, so I walked her around the fields of the high school, each being used by a wide range of sports – soccer, baseball, and lacrosse – each field filled with kids working hard and parents supporting them on the sidelines.

A few things struck me as I pushed the stroller in the rain.  One was a sense of gratitude to have found this place – Bainbridge Island.  It is a small little haven, where we have resources like these amazing fields our kids can use to play and run, and where dedicated parents get to connect with each other.

Two, I was in awe of how many people I knew as I strolled – some very well like good friends from my book club, others acquaintances that I have met along the way with Wes or through our lives here on the island or growing up in Kitsap County.  My heart leapt as I saw faces of friends I hadn’t seen in years, and I had fun recalling how we first got to know each other (baking bread on Friday morning at Madrona School, or mommy and me music classes when our big guys playing soccer now were in our arms, etc.).  So many fun, happy memories.

And three, I also felt a sense of dread (maybe I should call it fear) that there is so much pressure on our kids here on Bainbridge to be productive, and be really good at what they are doing.  While we aren’t yet to a place of having to hone in on “what Wes will be?” in terms of athletics or other definers, questions came to me about parenting on Bainbridge.  What if your child just isn’t really good at anything?  What if they struggle physically or socially?  What is they don’t have fun playing sports or other competitive activities?  What if they burn out at a young age because they’ve been too invested too young?  Why is it that if you don’t start digging in and playing now in second grade (or even earlier), you’ve missed your window to be part of the team?   Yikes.  These questions terrify me.

I grew up dancing, and from an early age was in ballet, tap and jazz.  This transitioned to an intense requirement to dance in a local dance company, and by the time I was in junior high, I was at the studio 6 days a week, often until 9:00 at night.  I was joined by a number of girls from a young age that also dedicated themselves to dance.   When I was ten, I asked my mom to let me stop dancing and start playing soccer.  I was told that we had invested too much into dance and that I was too good to quit.

Over the next few years, I started seeing that my skill and ability were falling behind a few of my friends with whom I’d always felt an equal.  I just didn’t have the strength or skill to keep up.  As they got better and better parts in ballets, I continued to be in the chorus – working so hard, but unable to step up to the next level.  My heart broke each time we had to audition for productions and I was once again an alternate for a lead, always in a secondary role.  I felt worthless and defeated.  As I write this what amazes me most is that all of this occurred before I was 14.  At fourteen years old I started getting stress fractures in my feet which brought my dance career to an end.  Outwardly I was sad and acted bummed, but inwardly I was so grateful.  I felt done – tired of the competition, tired of pushing myself, tired of having all of my energy go to dance.  I didn’t have a future career as a ballerina – I knew that.  I wasn’t going to go to university on a dance scholarship – I knew that.  And yet I was dancing with such intensity that it ruled my life.  And then with an injury, like that, it was over.  I was free.

Pushing Mimi in the stroller around the fields, looking at her sweet almost-seven-month-old face, I became acutely aware of how hard it is to be a parent.  We want what is best for our kids.  We work hard (and spend A LOT of money) to make things happen for them.  I want to be able to listen to my kids…hear their needs…and be able to respond to what makes sense for them.  How do you do it?  I think my plan will be to do what we had to do over the past few years during Hannah’s short life.  Try to guide the process.  Be open to what comes.  Be present for what we want for right now and give our kids permission to try something, stop something and focus on having fun.  Most important, be there for our kids and let them know we love them (and ourselves) no matter what.  A recent article in Psychology Today focuses on just this issue.  While our family is not rich, we live in a community that faces these challenges every day.

I look back at these times in my life with the wisdom of age.  Like all of us, we’ve faced so many obstacles and things we thought we could never, ever survive.  Hannah’s greatest gift continues to be showing me these lessons.  And the lessons keep coming with Wes and Mimi.  A few weeks ago Wes had the Wilkes 2nd grade concert – the kids sang, and then had the opportunity to display a talent.  Some played instruments, others did acts.  Wes played a sweet little song on the piano.  He was really nervous leading up to the day.  The afternoon of the concert, I picked him up after school like normal.  He was gushing because they had the opportunity to practice everything in front of the 3rd and 4th graders.  He told me that he was so glad he was playing the piano because after he did his song, a few kids came up to him and told him how well he did.  He said to me, “mom, it made me feel all warm and glowy!”  We had never talked about that “glowy” feeling, but I knew exactly what he was talking about.  He was really proud of himself.

Such great learning lessons in this Soccer Season.

I was just searching our computer looking for an old email message. What came up instead was an email that had the attached story.  What Happens_Die

After Hannah passed away, I heard the story of the soul’s journey as told by Kafka from a few folks.  Here it is again, written so well.  We have always said that Hannah’s life was so profound and she did such meaningful work in her short, 16 months.  I love this explanation (“And then Kabbalists said, when a young child dies, don’t cry too much, because in all likelihood that soul needed to come to earth for just a brief time in order to be purified so it could join God in paradise.”).  Not a day goes by that I’m not in Hannah’s presence – her life is still being lived by all of us who were touched by her.

Life is very full for us.  Maura is a vibrant, dynamic little being – she is already showing us her energy and strength.  At 10 weeks old, she is working very hard on being present – from following action with her eyes, to finding great delight in sitting up on her own, working on holding fingers and standing, and just starting to explore her voice.  She thinks Wes is just about the most awesome person ever.  Wes and his friend carpool home each day, and literally argue about who gets to sit next to Maura.  They both have their tricks for how to get her attention, stop her from crying, see if she’ll smile, etc.  It is very sweet to see this bond already so deep.

Every day I am reminded of what a joy and trial it is to be a parent.  The work is so hard at times, and yet the rewards are so great  – often from the simplest things.  I can stare for hours at Mimi’s sleeping face, and am so grateful to nurse her and feel her sweet skin against mine.  I am in awe of Wesley’s wisdom at 7 years old – he connects to concepts that I honestly don’t think I was even exposed to as a child, and he asks deep, thought provoking questions that lead to conversations I love having with him.  And, like most parents these days, we deal with screen time limits, expectations, and all of the other realities of parenting.  Balance is never easy, and I struggle on a daily basis with these things.

I was reminded this week of a book I read a year or so ago by Brene Brown, called “Daring Greatly“.  The focus is on vulnerability, and it hit home with me in many ways for stepping into life.  One of the things she discusses is wholehearted parenting – being fully present and available for your children.  Being vulnerable and allowing and encouraging that in our families.  I found online this great image of her “Wholehearted Parenting Manifesto.”  I keep it hung up in my closet so that I can see it every day.  I am reminded of this again as I think about our sweet, strong-willed Mimi and our future together.

Wishing all of you happy holidays and good times with your families.  I’m ever so grateful for ours.

Today is Hannah’s third birthday.  At 12:42pm, we welcomed our wonderful baby girl into the world.  Not a moment goes by that we don’t think of her and feel her deep meaning in our world.

Recently I was looking for our Flip Video camera (a little handheld video device that we used a lot before we got Iphones).  I found it in a box, and turned it on to see if it still worked.  There were 29 short home videos on the camera, most of Wes being silly with dance parties, etc.  The last 2 videos were taken on 11/4/10 – one during Hannah’s birth and the other about 30 minutes after she was born.  We were so happy – Greg and I are beaming with our sweet little girl in our arms.  I remark on the video how surprised I am with how perfect she is.  I can’t believe our good fortune.

Now I look at this video and hear those words with a whole new lens of what good fortune is.  We were so blessed to have Hannah in our lives.  The heartbreaking reality of her disease made each day with her so very, very precious.

It is hard to believe that we’ve now had Hannah in heaven longer than we had her with us on earth.  She continues to be our teacher, providing wisdom and grace far beyond what I ever imagine possible.

Yesterday Wes, Maura and I were walking home after brunch.  We were talking about Hannah, and within a minute a hummingbird came to the bush in front of us and sought out the few flowers that were still there.  Our little sign from nature that Hannah is with us.

We love you and miss you sweet Hannah.  Today we will go to your bench, send up balloons (including one from your baby sister) and again thank you for being a part of our family.

And our song for sweet Hannah…

Annie’s Song by John Denver

http://www.values.com/inspirational-stories-tv-spots/122-Annie-s-Song

You fill up my senses like a night in a forest
Like the mountains in springtime like a walk in the rain
Like a storm in the desert like a sleepy blue ocean
You fill up my senses come fill me again

Come let me love you let me give my life to you
Let me drown in your laughter let me die in your arms
Let me lay down beside you let me always be with you
Come let me love you come love me again

We have had a whirlwind three weeks with our sweet girl  Maura.  She is a strong little person – physically, emotionally and spiritually! 

Her body is so strong – the crazy kicks and movements I felt while pregnant are now evident during Mimi’s waking moments.  She is always going, hands moving, legs peddling, wiggling and holding her head up as high as she can.  This little one is a mover and shaker – so glad to have Wes here to help keep her company!

She also has a very strong personality – we’re liking the dual name approach to her – the serene, calm Maura meets the wacky, feisty Mimi – she is either off or on – and when she’s on, watch out!  She is quick to anger and thankfully quick to quiet.

And spiritually she seems to be a very old soul in this little, new body.  Already she is looking deeply into our eyes, able to hold her gaze for a long time.  She is a rich little person with a story to tell!

We’ve had a lot of visitors – family and friends coming to meet our new little one and we are so grateful for the support.  Our friend Tracey set up a mealtrain for us – if you live locally and would like to drop off a meal, we’d love it and would love to see you.  You can sign up here https://www.lotsahelpinghands.com/c/709881/

We already have hundreds of photos of Maura and our family.  Below are some of our favorites from the past few weeks.

Please reach out – we’d love to hear from you!

The morning of Maura’s birth

Maura’s first photo

Well, we’re entering the final stage of bringing our new baby into the world. This little being is very active – it has been from the beginning. I’m in awe of the movement – the patterns of wake and sleep; the response to stimulation – voices, scents, what I eat, temperature; the way it is working itself down to join us very soon.

We’ve been nesting – cleaning the garage, going through closets, doing some home improvements to make space for this new little person. Today I was going through the bookshelf in our bedroom, looking at all of the books I collected during Hannah’s life and shortly after – books on grief; on loss; on being vulnerable; on karma. Tucked into some of the books were notes, cards, letters. Most of these I have placed in a special box where we’ve collected so many of the wonderful words that you shared with us as we grieved the passing of our sweet baby.

Today I found this picture from a magazine – with the image of the woman running into the surf, facing the waves. What perfect timing. The waves of labor should start pretty soon – I can tell that my body is ready. The baby seems ready, and our family is ready, too. Grandma Yellow Trucks is here now, Wes’ best pal and confidant. The fridge is stocked, laundry is done. The sun is out and the moon is full.

As the quote says, “High tide! Time to move out into the glorious debris. Time to take this life for what it is.”

We’ll let you know when our newest family member is in our arms. Can’t wait to look into those beautiful eyes and get to know this new, precious life.

Well, we’re entering the final stage of bringing our new baby into the world. This little being is very active – it has been from the beginning. I’m in awe of the movement – the patterns of wake and sleep; the response to stimulation – voices, scents, what I eat, temperature; the way it is working itself down to join us very soon.

We’ve been nesting – cleaning the garage, going through closets, doing some home improvements to make space for this new little person.  Today I was going through the bookshelf in our bedroom, looking at all of the books I collected during Hannah’s life and shortly after – books on grief; on loss; on being vulnerable; on karma.  Tucked into some of the books were notes, cards, letters.  Most of these I have placed in a special box where we’ve collected so many of the wonderful words that you shared with us as we grieved the passing of our sweet baby.

Today I found this picture from a magazine – with the image of the woman running into the surf, facing the waves.  What perfect timing.  The waves of labor should start pretty soon – I can tell that my body is ready.  The baby seems ready, and our family is ready, too.  Grandma Yellow Trucks is here now, Wes’ best pal and confidant.  The fridge is stocked, laundry is done.  The sun is out and the moon is full.

As the quote says, “High tide!  Time to move out into the glorious debris.  Time to take this life for what it is.”

We’ll let you know when our newest family member is in our arms.  Can’t wait to look into those beautiful eyes and get to know this new, precious life.