allysonbrown.com – Riding the Wave

As I sit in my home office working, throughout the day I hear the thumps and dribbles of our son outside at the hoop practicing basketball. I’ve watched his vertical jump double, and his constant attention and practice now means that his left-handed layups are as good as his right-handed ones. Practice. Perseverance. Resilience. All of those qualities that we value in our teams at work are also what has been growing in our kids through this year of uncertainty.

Just before the pandemic hit, Wes was selected to be part of the inaugural class of www.boundlesswa.org. He had never applied for anything, and was proud of himself for writing the essays and completing the interview process. The program has had to transition to keep kids safe, but it has still honed self-awareness and deepened what it means to be a leader. Grateful mom is learning, too.

BI boy receives honor from state Senatewww.bainbridgereview.com • 2 min read

“Oh, Hannah.” So many hundreds of times I uttered these words during her short, intense life. I’ve said them over and over again since her passing – 10 years of “Oh, Hannah.” My loving, sweet baby brought us so much sorrow and so much joy.

This morning, I’m once again saying “oh, Hannah”. We sit here in the precipice of the future of our country. For the next 4 years, but likely for decades to come.

Hannah is now 10. She was born a decade ago, into a family who loved her infinitely, with a body that wasn’t able to survive without significant intervention. More than a decade ago, gene and stem cell therapies were showing potential and expectations for the new technology were high. The solution for her disease would have been there if only we’d had the science to diagnose her condition and the stem-cell and genetic therapies to fix the mutated gene that caused her seizures.

It wasn’t until after her death and subsequent autopsy that we learned about the spontaneous mutation of the ATP1A3 gene. It will take significant funding (primarily from the NIH) for science to be able to move this gene therapy work forward. As this article in Nature puts it, we need gene therapy to correct a genetic blip.

I am heart sick and tired today. Hannah’s life touches many of the areas that are glaring issues with the Trump Train mentality.

• Healthcare should be a right not a privilege
• Science is real and should be funded
• Women should be able to make the best choice for their body
• Disability rights should not be debatable, and someone with a disability should never be scorned or mocked

I know this election is not over. I have faith that every vote will be counted and those millions of voters who trusted the system and mailed in their ballot will have the same rights as someone who stepped up to a machine yesterday. Biden/Harris may very well win. Dear God, I hope so. And yet like so many of my friends and family, I weep for our country and the disparity between our thinking and that of the Trump world. I don’t want to get Covid. I don’t want to see anyone else in our family become sick or die unnecessarily. I want science to be respected.

So on this, Hannah’s 10^th birthday, I’m making a birthday wish on her behalf. Like every birthday wish, I’ll keep it a secret so that it can come true.  Oh Hannah, let it come true.

Nine years ago right now, this minute, I held our healthy baby girl Hannah in my arms. She had been born an hour earlier, and I marveled at her perfection. She was alert, bright, had already latched on a little, and while exhausted from the labor and delivery, Greg and I were over the moon.

It wasn’t until a few hours later that our 16-month journey through seizures, hospitalizations and her graceful passing would begin. Those first hours we took for granted. Those first hours were our starting point on the immeasurable love we feel for our children. Those first hours are still one of the highlights of my life.

And yet here we are, 9 years later. Hannah is still with us every single day. Every beautiful sunset is because of her. Every butterfly that crosses our path is her coming for a visit (she even brings a butterfly friend to play with  sometimes). Mimi and Wes know her as well as Greg and I do…through stories, photos, and her uncanny ability to show up at just the right moment in nature. And for me, she shows up in song all of the time. Both songs from her life, like Annie’s Song and Here Comes the Sun, to new songs that weren’t even written during her lifetime like Something Just Like This and Can’t Stop this Feeling.

Because I know deep sorrow, I also know unspeakable joy. Hannah’s short life, and every milestone since then are more vivid – more textured – because of the extraordinary journey we started 9 years ago.

Happy Birthday, baby girl. We love you.

Seven years ago right now, I held sweet Hannah for the last time. Just a few hours from now, she would pass away in my arms. Still the most powerful moment in my life, and one I will never forget. It is a vivid, lifelong memory.

I was supposed to be at Michelle Obama in Vancouver, BC tonight for her ‘Becoming’ book tour. The snowstorm in February and its havoc shifted that for me, and I’m grateful. I am in the midst of one of the worst flu viruses I have ever had – rendering me completely bedridden yesterday, and finally moving slowly today. As I prepare for the rescheduled BSF gala on Sunday, it is important to be able to sit back and reflect. I didn’t really have a choice yesterday!

Sweet Hannah would be in 2nd grade right now, enjoying the sweet sunny days of the first of spring. This little one on the swing makes me think of her and who she might have become. I hold her as she will always be – a baby, but I can’t help but think of her own ‘Becoming’. We get to have that in our imagination, and I will forever think about who she would be if she were still with us.

I recently read this article about how caregivers never stop thinking of the children they care for. I know that the special doctors and nurses that cared for Hannah are still in our hearts, and I imagine that she is in theirs. Nothing replaces our kiddos that have passed, but knowing that she is held by many is wonderful salve for the pain we feel.

On this 21st of March, the first day of spring, I honor sweet Hannah. I miss her and love her, and hold her in my heart. And here’s her song, written in the final days of her life by Songs of Love.

I rarely write posts anymore, but I read an article yesterday in the New Yorker, and it stopped me in my tracks. This piece – written by a wonderful author that passed away in July – talks through her process of answering questions from friends as she was facing her terminal cancer.

It made me stop and think about our care for Hannah, and how we are all in that question of life and death.

I think a lot about the place where Greg and I were 6 years ago right now, when we had to make choices for Hannah’s care, and knew that while we could extend her life, we couldn’t stop her disease from progressing. We had to go to that quiet place, and come to terms with how we could best support her – and without her being able to tell us, make decisions for her that we knew would be life-limiting, but would maximize her quality of life.

The people in our lives often fell into one of two camps: those that avoided us because it was just too painful, and those that leaned in and weren’t afraid to ask the questions they were curious about for how we were making decisions for Hannah (I’m so grateful so many of you were in this second camp). We were honest and open about sharing – how our hope changed from cure to comfort; how our hearts broke thinking of her end of life, but how we also owed her the opportunity to have the best experience possible with the time that she had, and with a graceful transition and passing. That dance of cure and comfort is a hard one, isn’t it? I think in so many ways it must parallel what our loved ones with terminal conditions are facing. I’m so glad that we all have people in our lives who so deeply love us, and who will be there through the cure and comfort dance, too. I hope that we can be part of that support for all of our friends and family should you need us (we are leaning in and are here for you).

I find This article in the New Yorker is so connected to how we thought about Hannah, and how I think about my own mortality. It may be interesting for you and those in your inner circle.

Sweet Hannah. Gone 5 years today. Even in my wildest dreams I couldn’t have imagined how we could be here in this lifetime. We work it out. We walk it out. We live and we feel.

The past two days I’ve been in Denver with Seattle Children’s at a Pediatric Parent Collaborative hosted at The Children’s Hospital of Colorado. We are here with 15 other pediatric hospitals from across the country, talking about how we move the needle on the patient and family experience. How do we work with these teams to bring the HUMAN part of all of us to the forefront – for patients, families, physicians, nurses, support teams? What matters most? What can these institutions do to bring hope to all the families that are in their institutions?

It has been a powerful few days. The people doing this work are remarkable in so many ways. There is so much care and love flowing through here. And most are authentic, open and loving people (almost all women, of course!). It felt great to be in that room, to be an honored parent voice, but also to be one of them. Carrying this anniversary with me, I reflected deeply on what our care givers meant for us. I’m also sitting in the question about what my role is in moving this work forward. I don’t have an answer for that, but I’m enormously grateful for the chance to be in the conversation.

I also see the challenges – risks – road blocks – that these organizations face. From fear of lawsuits to lack of organization-wide support and cost. So many sides to this challenge.

I’m getting a little more clear about how I might help with this work in a way that is sustaining for me, but not overwhelming – not taking over our lives in any way. I’m here for my family. I’m here for IslandWood. I’m here for my community. I need to let those things be the center of my world. But my heart will stay open to this family centered care work, and I’ll continue to weave it in where it makes sense.

These past few days, I’m also aware of the burning need for all of us to RISE UP. To break through the barriers – the negativity caused by the president and his closed-minded and extreme beliefs. By the lack of compassion with each thoughtless signing of the pen. The cavalier way that we slice the things that help us be human while inflating those things that are fraudulent symbols of strength.

We will Rise Up. Day after day. Moment after moment. In spite of ache. Like Hannah. We Rise.

“It was the most incredible experience…”

That is what I say now whenever the topic of our middle child comes up. It isn’t as often as it used to be. Sometimes I’ll have someone ask, “wow, that is a lot of years between your children, was that planned?” Other times I’ll get a simple question, like “did you use a doula with your children?” and I’ll say without thinking, “yes, when the one that helped with Wes’ birth retired, we had another amazing doula with us for our second two”. Then I realize they only know us to have two children.

Usually there is a follow up question, and I have the chance to mention Hannah. And what I now roll her whole life into are those six words, “it was the most incredible experience.” Hannah’s birth…her life…her passing…her legacy.

Our sweet girl celebrated her 6th birthday yesterday – how can it be 6 years? Hannah would be in kindergarten this year, and I can only imagine how our lives would look if gene therapy had been available, or if the small mutation that forever changed our lives hadn’t been there. It is now just a passing flash of the possibility, before once again the sense of awe of our experiences with Hannah overtakes the loss.

Amazingly, the weather here on Bainbridge Island was exactly the same yesterday as it was in 2010. A rainy, cold October opened up into a few sunny, unseasonably warm November days. On November 4, 2010, I remember the dawn hours, seeing the sunrise to the east from Swedish Hospital on First Hill as my labor had quieted – and thinking to myself, “what a lovely day to be born!” A few hours later, Hannah was in our arms.

The story of the hours after her birth and the following sixteen months I’ve shared many times, but the story of that sunrise before her birth – I rarely think about it but carry it with me. I often talk about Hannah and sunsets, since she passed away at sunset. Hannah was my sunrise girl, too. I always thought I was a ‘west-facing’ person. Now I realize I am also ‘east-facing’. The beginning. The dawn. This photo was taken looking to the city on a morning this week, but the sky looked just like this six years ago, too.

My heart is with our wonderful, sweet girl. Carrying you always, my love. Happy Birthday, Hannah!

I mentioned in a previous post that I was thrilled to be a part of the inaugural cast of Listen to Your Mother – Seattle.  The event happened on May 9, an it was amazing in so many ways.  The women who I joined on stage were truly remarkable.  Beautiful writers, wonderful story-tellers, and oh, so funny and charming.  I think the thread that all of us brought to this was a
vulnerability that we don’t often get to see in people.  They were real, honest, and fully present.  Each story brought me closer to them, and in just 90 minutes of listening, I felt like a much richer person.  I’m so grateful.

Unfortunately there were some production issues with the show, and we are not
certain if there will ever be video of the event.  Heartbreaking for all of us, but a lesson in making sure that all things are well buttoned-up, even if you’re not in charge!  The group is trying to figure out what our options are…we’re hoping to fix the video from the event, or even try to do it again…we don’t have an answer now.

In the meantime, inspired by my fellow cast mates (many of whom are published writers that share stories throughout a wide range of publications), I decided to see if the story had any interest beyond my personal circle.  I submitted it to a few online publications, and it was picked up!  The first journal to select it is one that is near and dear to my heart.  The Mighty is a magazine I found on Facebook through friends, and I’m always touched by the stories told from families.  The audience is primarily parents of special-needs children, but it goes far beyond that, too.  Here is the link to my story as told and edited by them…The Mighty – Allyson Brown

In addition, I just read the final proof of the piece that will be published in “Seminars in Neurology” – I’m excited to have Hannah’s story reach Neurologists all over the world.  To get a sense of the piece, here is the draft abstract:

Rather than in conflict or in competition with the curative model of care, pediatric palliative care is a complementary and transdisciplinary approach used to optimize medical care for children with complex medical conditions. It provides care to the whole child, including the physical, mental, and spiritual dimensions, in addition to support for the family. Through the voice of a parent, the following case-based discussion demonstrates how the fundamentals of palliative care medicine, when instituted early in the course of disease, can assist parents and families with shared medical decision making, ultimately improving the quality of life for children with  life-limiting illnesses. Pediatric neurologists, as subspecialists who provide medical care for children with chronic and complex conditions, should consider invoking the principles of palliative care early in the course of a disease process, either through applying general facets or, if available, through consultation with a specialty palliative care service.

Pretty dry reading for sure, but what I just love is that this is a piece from an ICU doctor to Nuerologists, encouraging them to improving the quality of life for children with life-limiting illnesses.  I’m so grateful that Dr. Clark saw this possibility in the writing I did during and after Hannah’s life, and that it might influence her peers to think about family-centered care.

Next week will be my last meeting on the Seattle Children’s Family Advisory Council.  It is hard to believe that I’ve served on this council for four years.  It has been my joy to provide a family voice to Children’s, and I appreciate that the maximum time to serve is two, two-year terms.  It is a group that is best represented by families that are in and at the hospital often, using the services that tens of thousands of children and families in our community count on all of the time.  While we’re still there often for Wes, it isn’t like our intense times with Hannah.  I’m searching for what might be next for me with Children’s – I’d like to continue staying involved.  However I’m grateful for the chance to open a spot for another family to share their experiences and wisdom.