allysonbrown.com – Riding the Wave

Grateful for family this Mother’s Day.  Generations together, celebrating our lives, cooking dinner with each other, growing with every experience we share.

Hannah is as present as ever…like every day, we look at her photos, remember her sweet life and our wonderful memories of our amazing girl.

We carry her with us as we celebrate the upcoming arrival of the newest baby McNutt, due September 28.  So far, baby is healthy and active – I’m feeling great and we are basking in the glow of knowing in about 19 weeks we’ll get to once again hold a little one close.  As the Beatles sing in “Golden Slumbers,” it feels like going home.

Golden Slumbers

We’ve kept this pregnancy quiet but with great news from our recent ultrasound, we are happy to let you all know our family is growing.  We’ll continue to post as we get closer to our date and are as always, thankful for your love and support. 

Greg and I recently had the opportunity to get away together for a long weekend in Arizona.  The beautiful Scottsdale sky gave us warm, luxurious days and glorious sunset-filled evenings.  We drank it in, honoring all that we have experienced over the past few years, growing together and loving our kids. 

Each sunset still brings us to our sweet Hannah – we are instantly connected to her.  As I hiked Pinnacle Peak one very warm morning, I was followed by yellow and white butterflies – and as always had a great little conversation with our girl.

Hannah is with us – every moment of every day.  I can still feel her, imagine her sweetest soft skin and her little kissable mouth.

 One year ago tomorrow she passed away.  I have been thinking so much about the fact that she would be just over two years old right now…but it feels like it has been a decade since I was pregnant with her.  At the same time, the year has flown by – I can’t believe it has been a year.

 What seems an amazing, perhaps ironic twist – we just learned that the genetics team at Seattle Children’s Research Institute has been able to diagnose the gene mutation that caused Hannah’s sickness. 

 For a year, the team has been studying her gene sequence (and ours as well) to see if we might get an answer.  We have it.  We meet with Bill Dobyns, the researcher that has been leading the effort next week to get the details, but it appears Hannah had a “spontaneous mutation” of gene ATP1A3.  They know that it was a spontaneous mutation rather than a passed on condition because neither Greg nor I have the mutation.  Thankfully that means that Wes does not have it either – somehow this gene mutated in Hannah.  I’ll share more in the coming weeks as we learn, but attached is a link to an article that helps lay things out in the simplest terms I could find:

http://www.dukehealth.org/health_library/news/gene-discovery-set-to-help-with-mysterious-paralysis-of-childhood

 What is very unusual for us is that the onset so early in Hannah’s life is not a common trait of this genetic mutation, nor is the severity of the condition – in fact from what we understand, the way that this mutation attacked Hannah has only been seen in mice and not documented in humans.  There are not currently any therapies to treat this disease, but each case that is diagnosed helps to deepen the understanding and leads to new research.  Perhaps a family that has a child with similar symptoms to Hannah’s can test for this gene mutation and have an answer to what is happening to their child.

 I have many times referred to Emily Rapp, the mother of Ronan, a little guy with Tay-Sachs disease (she is the author of the “Dragon Mom” article).  After his diagnosis at 9-months-old, Emily wrote a blog about her experiences knowing that her son would not survive.  She has turned her blog into a wonderful memoir, “The Still Point of the Turning World”.  I have the book but am not able yet to read it fully.  I have read and listened to a number of her interviews, and she spent time with NPR’s Terry Gross this week talking about her book and experiences.  http://www.npr.org/2013/03/18/174419920/still-point-a-meditation-on-mothering-a-dying-child

 Having a diagnosis gave Emily time to process letting go – we had that, too, but it took us much longer to get to a place where we knew we would focus on Hannah’s comfort because nothing else was working.   For us, time was truncated into a few months of comfort care.  After a year of trying every type of seizure medication, we couldn’t help control her epilepsy.  Now we know it was due to this gene mutation.  

 We hope that part of our sweet baby Hannah’s legacy will be to help document this gene mutation, and offer another clue for Neurologists to investigate when a baby presents like ours.

 So tomorrow, we hold each other close.  We go to the edge of the water to Hannah’s bench, look out to the city, release balloons with our special messages up to heaven, and continue to dream about our wonderful, amazing baby.

 This little girl below moved me – I don’t even know where I found this image, but it was in my photo stream on my Iphone as I was browsing today – I must have saved it close to a year ago.

This is how I picture Hannah – in a field of flowers playing and dancing – our sweet 2-year-old lover of life.

Hannah is always on my mind, but this morning, I am feeling a longing for her that is again bringing me to tears. 

I’ve been so busy in our lives these past months, just like labor and delivery, I can remember the good times, but so much of the dark, sad days are there, but not at the surface.  Thankfully our recall brings us to the good times.

I was searching for this photo on our computer today and found hundreds of videos – some of Hannah, but more of Wes that first winter of our sweet girl.  I see in these videos not the trauma and heart ache, but the fun – the love that we all shared.  It warms my heart, and I know that we had such wonderful times together, even in the storm of our daily lives.

Hannah Talking Video February 2011

 What a month!  Life has been at a break-neck pace the past weeks, between holidays, Wes’ 7^th birthday, time with family and the One Call for All campaign I’ve been leading (which broke $1 million last week!).

 Wes and I have been doing dance parties a lot these days – we put on Pandora, choose “Rock You Like a Hurricane” station (thank you Scorpions, or as Wes calls it, “thank you Godzilla music!”), and dance around the living room.  Inevitably the playlist goes through the classic 80s rock hits, with a little Bon Jovi, a lot of one hit sensations, and a fair deal of Guns ‘N Roses.  I always get a little nostalgic when I hear “Sweet Child o’ Mine”…brings me right back to those fun days at Alpha Phi.

 I don’t think I’ve ever listened to the lyrics until this recent reconnection – I always hear Axl’s voice and the guitar solos.  I’m grateful once again for Wes helping me connect in ways I never imagined.

 She’s got a smile that it seems to me
Reminds me of childhood memories
Where everything was as fresh as the bright blue sky

Now and then when I see her face
She takes me away to that special place
And if I stare too long, I’d probably break down and cry

Whoa, oh, oh, sweet child o’ mine
Whoa, oh, oh, oh, sweet love of mine

She’s got eyes of the bluest skies
As if they thought of rain
I’d hate to look into those eyes and see an ounce of pain

Her hair reminds me of a warm, safe place
Where as a child I’d hide
And pray for the thunder and the rain to quietly pass me by

Where do we go?
Where do we go now?
Where do we go?

 This month has also had the biggest emotional storms we’ve felt in a while.  Hannah’s first Christmas was spent at Seattle Children’s.  We have very vivid memories of her there with us, Greg spending Christmas Eve night so that I could be with Wes; me and Marilyn at home on Christmas morning, unwrapping gifts, and packing up to go to the hospital.  One of my favorite photos of sweet Hannah was on Christmas afternoon at the hospital, in grandma’s arms.  We didn’t know then the path we were on – we thought whatever it was would pass…we’d find a solution.  She was vibrant, happy, aware of us around her.

Hannah’s second Christmas was very different.  While we weren’t in the hospital as the year prior, Hannah was a changed baby.

  While we knew the toll of her disease and treatments were causing degeneration, living in the day to day, I didn’t see the outcomes as clearly as I can see them here in the photos.  I think Hannah became our angel baby well before she passed.  It was like she went inward – and had such incredible peace.  It looked like she stopped fighting and found peace just being.

 We recently read Dr. Eben Alexander’s book “Proof of Heaven.”  His story is an interesting one, and while Greg and I are skeptical about a little of his story, I believe in so much of what he describes…I believe Hannah’s life was meant to be the way it was.  My hope is that with each seizure, Hannah was able to take a little journey to the divine – to have a break from her reality and to check out heaven just a little bit.  And I believe (or perhaps better to say hope more than anything) that this brief stay on earth is part of a bigger journey.  Our sweet teacher.

 During the holidays, I would have moments where a memory would come into my mind, and I would burst into tears.  The most poignant was at the Seattle Center with Wes.  We were at the Center House waiting for Geeg and Anasophia to join us for a snack before the Nutcracker. Wes and I were eating and playing, enjoying ourselves.  There was a dance performance up on the center stage – a group of kids from a suburban dance studio doing a bunch of numbers.  They reminded me of growing up dancing, and we were enjoying ourselves very much.

 At a table adjacent to us, a family sat resting and enjoying themselves.  A little girl, probably about 4 or 5, was next to the table, swirling and twirling to the music.  She was in her own world, and I could see she saw herself as a ballerina.  Her parents were laughing and talking to each other, not noticing her, and she was perfectly content in her beautiful dance world.  I thought of myself at that age, and how my imagination would take me into the same magical dance world.  And then I thought of Hannah, and not the little baby that we knew so well, but that hope of her – what we (as all parents) dream of when we’re expecting our children.  And just as I began sobbing, Geeg and Anasophia came up behind us.  The moment was so fast – to go from delight to sobs…and that’s how it goes these days.

During that same week, I received a post on Facebook from followers of Kahil Gibran.  I get daily quotes sent to me, and they always have stunning images.  However none has struck me so deeply – mainly because the baby in the photo looks so much like Hannah.  It isn’t one of our photos, but I swear it is her.

And then to sleep with a prayer
for the beloved in your heart
and a song of praise upon your lips…Kahlil Gibran♥

We are wishing all of you peace in 2013.  Our focus will be on taking care of ourselves, finding moments of laughter, being kind to ourselves, and continuing to be thankful for all that life has given us.  Hannah continues to be on my mind all of the time – not a moment goes by when she isn’t with me.  And I am so grateful.

I’ve had a hard time sitting down at the computer lately…in part because I’ve been really busy with One Call for All, and in part because the emotions are hitting so often and fast, I can’t really make sense of anything.  My hope is to be able to sit down and write next week.

In the meantime, I wanted to share a link to my friend Robin’s blog.  I mentioned her before – she beautifully writes about loss and survival.  Robin wrote a piece this week that brings in the saddness from Newtown, and talks about all families – the common thread of courage.  http://www.griefgratitude.com/

As always, we are grateful to our friends and family for helping us navigate these uncertain waters.  I can’t wait for school to be on break so that Greg and I can spend our time with Wes, our puppy Rooney and our extended family.  Big loves to everyone.

Today is Hannah’s 2^nd Birthday.  I have been in and out of melancholy for the past few weeks, holding her so close to my heart that it physically hurts.  A fall cold that has never really gone away has turned to a lingering tightness in my chest.

 As always, there are reminders of Hannah everywhere we look.  The beautiful, watercolor skies we have had over the past few weeks during an unexpected clearing at sunrise or sunset; a surprise hummingbird grabbing a drink at a friend’s feeder on Halloween eve; the mustard-yellow banana slug that Wes and I saw on a walk today.  She is here – we feel her love and energy.

 Yesterday I went over to Seattle in the morning by myself.  I walked from our home to the ferry, listening to music.  I listened to Alexi Murdoch – one of my favorite singers.  From the first words, tears began to flow.  Orange Sky is one of my favorite songs of his, and now when I listen to the words, I hear Hannah.

 Attached is a video of Hannah’s first two years, including photos from our visit today to her bench.  As she is so good at creating, the sun came out and the rain stopped as we played on the beach and released balloons with messages to her up to the heavens.

 Enjoy the video and the song – it may take a bit of time to load,  and the pictures are a little grainy in order to fit the blog size restrictions. 

Hannah is our Orange Sky.

Hannah’s 2nd Birthday Video – Blog

 Love to our baby and much gratitude to all of you for being a part of our lives.

 Below is a piece of artwork that I saw on my visit in the city yesterday.  The artist is Brian Andreas, and a number of his pieces are in our home.  This one is called “Living Memory”. 

When I think of ‘island time’, I usually think of slowing down.  That doesn’t seem to be the case for our family.

 We’ve been back on the island for just over a month and have had lots of action.  There were things we expected – Greg resumed his ferry commuting and life crossing the sound; Wes began first grade at Wilkes Elementary and has started piano lessons and  swimming lessons; we celebrated my birthday and the 6 month mark of Hannah’s passing.  But life has also brought us a few unexpected twists that are really exciting.

 On Tuesday, we will bring home Rooney – our darling 8-week-old Wheaten Terrier.  Rooney is named after one of Greg’s favorite soccer players, Manchester United’s Wayne Rooney.  She is a local island dog, found through our moms yahoo group on the island and living just a few minutes up the road from us.  Wes and I went to meet the puppies on my birthday, and Wes knew which one was for us.  He kept saying, “mom, that’s her.  I just KNOW that’s her!”  As we’ve been getting to know her on our frequent visits, we are learning that she is a little dog with a BIG personality.  Yikes!  We are preparing for some exciting days ahead.  We can’t wait for her silly energy, her playfulness and her love.  She is a welcome addition to our family.

 But for me, the warp speed is wrapped around my work.  If I could have sat down to write the perfect job for myself, I would have included a role focused on the community, where my skills in marketing, non-profit leadership and strategy could be of use.  I also would have included the fact that while I want work that is fullfilling, I also want to be able to devote time to our family, writing, and taking care of myself.  I would want a role that is part time, but where I could fully show up when I was working, where I knew that the work was making a difference in people’s lives.

 What I didn’t expect was that the role would present itself to me the first weekend we were home on the island.

 While reading the local newspaper that first Sunday morning, I saw an ad for the Executive Director at One Call for All.  I was immediately drawn to the ad, as I have been a long admirer of the organization and its work (see here for details).  Moreover, the role was 50%, allowing for the balance I was seeking in a future role.

 Long story short, after a few interviews and lots of discussions, I’m in!  I began jumping in feet first last week, as our annual “Red Envelope” campaign to every household on Bainbridge Island will go out with the help of more than 100 volunteers stuffing envelopes together last Friday…a great time to start. 

This extraordinary organization has a unique mission, through an appeal to all homes on the island, we raise money that is distributed to more than 85 local non-profits that are designated by the donor.  And the awesome thing is that 100% of the designated funds go directly to the organizations chosen by the donor!  Last year, the community gave over $1 million back to our local non-profits through this effort – a huge sum of money that goes a long way in making all of our lives better.

 As I was preparing for my first interview, I was looking through some boxes of things from my past work.  In the first box, I found a bunch of things I had hung up on a bulletin board above my desk.  I found a poem by Marge Piercy that perfectly fit my hope for work, and what work means to me.  I think I found my place at One Call for All, and can’t wait to dive in.

 I’ve learned over the past few years that sometimes things are just meant to be, and the less you have to work for it, the more right it is.  I felt this time after time with Hannah – from the doctors that entered our lives, to the homes and transitions for all of us.  While each move was challenging in its own way, they all happened in our lives without the pushing and shoving that I’ve felt in the past.  We’ve been vulnerable – open to what may come, and listened to ourselves as we stepped into these new adventures.

 I’ll continue to write, posting on the blog when it feels right.  I plan to keep the big picture of my writing going, telling Hannah’s story and helping her continue her role as teacher.  But now I have this new work…this place to be of use.

 Poem: “To be of use” by Marge Piercy from Circles on the Water. © Alfred A. Knopf.

I love the poetry of Mary Oliver.  I’m grateful to have found her as a young woman, introduced by my Aunt Gigi with a volume of her poetry for my 22nd birthday.

Today is Mary Oliver’s birthday.  She is 77, and from what I understand, still going strong.  Her work is timeless, and she continues to produce new volumes.

A friend posted on Facebook today with “In Blackwater Woods.”  This is one of those poems that I knew, but until today, I didn’t really know.

Happy Birthday, Mary Oliver.  Thank you for your insight and grace.

(To make it even better, attached is an archived link to “the Writer’s Almanac”.  If you get through the first few minutes, you’ll hear Garrison Keeler reading this poem)

http://writersalmanac.publicradio.org/index.php?date=2009/05/03#

In Blackwater Woods

by Mary Oliver

Look, the trees
are turning
their own bodies
into pillars

of light,
are giving off the rich
fragrance of cinnamon
and fulfillment,

the long tapers
of cattails
are bursting and floating away over
the blue shoulders

of the ponds,
and every pond,
no matter what its
name is, is

nameless now.
Every year
everything
I have ever learned

in my lifetime
leads back to this: the fires
and the black river of loss
whose other side

is salvation,
whose meaning
none of us will ever know.
To live in this world

you must be able
to do three things:
to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.

“In Blackwater Woods” by Mary Oliver, from American Primitive. © Back Bay Books, 1983.

It is reunion season.  This past weekend, it was my high school 25^th reunion.  For many reasons it didn’t work out for me to go.  I enjoyed seeing photos of my classmates, and reading about the connections on Facebook.

Talking about the past few years still feels overwhelming to me.  It is nice when I run into people who know about Hannah – then I don’t have to start from the beginning and comfort them, or worse yet, try to not talk about Hannah when I tell the story of “what’s been going on with me” since we last spoke.  If the person with whom I’m talking doesn’t know about Hannah, either way, it is awkward.

I was able to make it to a beach party hosted by a couple that I’ve known forever.  Many of the friends there I don’t see often, and a few I haven’t seen since my early years in college.  It was wonderful to see them, and to reconnect on some of the funny, simple things of our earlier days.  I love that you can transport back in time, and be that same, goofy 18-year-old that you were when you all started hanging out.  I’m so glad to have been able to linger at the party, and for most of the folks to have known about our situation so that it wasn’t the center of conversation.

This week, I came across a song that makes me think of those old friends in my life. It’s by Canadian singer-songwriter Justin Hines.  As I looked up the video for this song, I was amazed to see that Justin has a rare genetic condition – Larsen’s Syndrome.  This is very different from Hannah’s, with a host of different symptoms, but I’m sure this young man has spent many weeks in Children’s Hospitals throughout his life and his parents supported him, feared for him and loved him just as we did our girl.  I love seeing and hearing what is possible from such an inspirational guy.

The song’s lyrics connect to where we are in life – transitions, reconnections.  Sweet Hannah passed away four months ago yesterday.  I held her in my heart as we sat on the beautiful beach, and admired other families with their little gals.  Hannah would be 20 months old now – and I see her in my mind, so full of life.  I see her with wispy brown curls hanging down to her shoulders, and her laugh is full and clear.  What might she have now, 8 or 10 teeth that show when she smiles, and the same high dimples in her cheeks as Wes?  As I see babies her age, I feel transported to her.  It is just recently that I am able to see baby girls and not feel that deep, aching in my heart…I can now be happy for the family, and I can connect with the baby and delight when they give me a response. 

It was again a lovely sunset last night.  These warm days, there are few hummingbirds near our home, but there are wonderful butterflies.  Whenever I’m out walking, I often have a white one that comes close (I think they are actually moths, but they seem so much sweeter).  I say a little hello while it darts around me, I get a reminder of our constant connection to nature, and I feel like I’ve had a brief visit from Hannah.

Wish You Well

In times like this
I start to ponder all the things we’ll miss
We can always reminisce

When you come back from the grey beyond
with moonlight in your hair
I will meet you where that dark road ends
and it won’t be long until we’re there

Once, once again
we’ll talk about way back when
Oh but until then, I wish you well
Oh, I wish you well