allysonbrown.com – Riding the Wave

Today my heart is aching. In about an hour, it will be exactly 14 years ago that Hannah entered the world. Our beautiful, perfect baby girl.

Our world unraveled shortly after her birth, and we painstakingly rewove a new tapestry – one filled with a different kind of awareness about how fragile and precious life is and how even in the most heart-wrenching grief, you can find an abundance of joy.

This morning I was looking back at my Facebook posts on this day over the past 2 decades. I reread many of the birthday posts I wrote in honor of Hannah (they are on the blog if you’d like to peruse). I still feel that same love and yearning that I expressed when her loss was recent. However what I didn’t realize until today was that it was on this day, in 2008, that Barack Obama was elected president.

I remember how much joy and relief I felt – how inspired and hopeful. How much love I felt for my fellow Americans. I can’t tell if my heartache today is my continued grief with the life Hannah could have had if she’d not been born with a life-limiting condition, or if my heart is heavy with the impact of what the election tomorrow will mean for our country.

I often focused on a song to share in my posts during and after Hannah’s life. All have special meaning in our lives (many are featured on this wonderful list of 50 songs created for a better world. https://playingforchange.com/articles/songs-of-hope-50-songs-created-for-a-better-world. But this one. This is how I feel now – Hannah taught us as parents; we teach our children and I know Wes and Maura are the people they are because of all of the adults who love and teach them. Our kids do see the truth. They know. Praying for a future we can be proud of together.

Teach Your Children

Song by Crosby, Stills, Nash & Young

You, who are on the road
Must have a code you try to live by
And so become yourself
Because the past is just a goodbye

Teach your children well
Their father’s hell did slowly go by
Feed them on your dreams
The one they pick’s the one you’ll know by

Don’t you ever ask them why
If they told you, you would cry
So just look at them and sigh
And know they love you

And you, of tender years
Can’t know the fears your elders grew by
Help them with your youth
They seek the truth before they can die

Teach your parents well
Their children’s hell will slowly go by
And feed them on your dreams
The one they pick’s the one you’ll know by

Don’t you ever ask them why
If they told you, you would cry
So just look at them and sigh
And know they love you

Don’t you ever ask them why
If they told you, you would cry
So just look at them and sigh
And know they love you

Ooh, and know they love you
And know they love you, yeah
And know they love you

Tonight at sunset, it will be 11 years since Hannah passed away in my arms. Our sweet girl would be almost a teen.

Yesterday in the car driving home from a playdate, Mimi asked me if doctors know how to fix what happened to Hannah (surely science would be there she thought). Mutation. “A mutation is a change in the DNA sequence of an organism. Mutations can result from errors in DNA replication during cell division.” One small mistake on our seemingly infinite line of DNA.

I suppose the first step is to be able to identify exactly where the mutation occurred. We have this now from the great genetics work of the SCH Research team that identified the spontaneous mutation that caused Hannah’s disease. But like so many others who have faced the dreaded ‘rare disease’ diagnosis, we didn’t have this during Hannah’s lifetime. The second step would be the ability to edit the gene so that the mutation is no longer an issue. Unfortunately for Hannah and the other kiddos with rare diseases, this isn’t yet a treatment option. But we know, like so many cell biology advancements, it is coming.

At sunset tonight, I’ll think of Hannah (as I do everyday when I see a hummingbird, hear a special song, or see the sun rise or set). I’ll also pray for our extraordinary scientists who are working fast on gene therapies that will one day (soon I hope) help other children and their parents who are living with the uncertainty of a diagnosis that they are helpless to heal.

Sweet Hannah, we love and miss you every single day.

It has been so much fun going through my photos and videos of Tanzania. I am in awe of the beauty – landscapes, people, animals, flora. I put together a little video, but it really doesn’t do it justice. Volume on!

https://vimeo.com/797877620

What an incredible journey! I arrived home on Thursday and am in awe that I actually was in Africa last month. I am sorting through more than a thousand photos and videos, but put together this little video with some of my favorite highlights. I’ll recap more later, but here is the extraordinary experience we had climbing Mount Kilimanjaro. You’ll want sound on/volume up!

I’m here and so excited to be in Africa. I arrived yesterday morning to Arusha, and dove in getting to know my group of 8 and our guide Ben. Arusha is a thriving city of more than 3 million, and showcases the color and vibrancy of the Tanzanian people. We depart tomorrow for the climb. Follow us tomorrow and beyond on the cybercast at www.alpineascents.com/mount-Kilimanjaro-cybercasts

I’m so excited to share that as of earlier this month, I’m officially the National Director of Leadership Giving with JDRF! I am thrilled that I get to bring my personal and professional experiences together to work on finding a cure for Type-1 Diabetes (T1D).

The journey over the past 15 months has been a rocky one, with Covid impacting every area of our lives (and those of the lives of everyone we know). While my career transition included a lot of heartache, I was able to immerse myself in being home with Wes and Mimi.

Each day (at first with 100% online learning, then later with hybrid in-person school) I was Mimi’s learning partner. We read together, did math together, played outside together…time I wouldn’t have had otherwise with this amazing little person. Her first-grade year was nothing like we imagined but was filled with fun and adventures that we will treasure. Similarly, for Wes, his freshman year allowed us to see how strong he is – as a student, an athlete, and a young man. He amazed me with his commitment to doing well in his classes, and not once did he miss a zoom class, assignment, or check in with his teachers. He showed up and tried hard. I’m very proud of my kiddos for all that they accomplished during a crazy, uncertain year.

For me, I had the chance to examine what matters most. As I started thinking about my next career, I realized that I wanted to take the time to really understand my values, strengths, and vision for what I wanted in my work. I reached out to Linda Glass, a former Starbucks colleague and now an amazing coach (who often works with people like me who are exploring big career moves). Linda’s process allowed me to take inventory of my life, my work, and where I wanted to go. It prepared me for the job search process and reinvigorated my sense of purpose. And it helped me navigate the rocky waters of finding my dream role. I’m grateful to Linda and her process – it worked wonders!

As I was deeply steeped in my job search, I watched an amazing film about the author Amy Tan, “Unintended Memoir”. In it, she talks about her life, and shares information about her book, “the Opposite of Fate”. I couldn’t stop thinking about this idea – that it isn’t fate that drives us, but something so much deeper. I thought of our life with Hannah, and with T1D and the role it plays all day, everyday with our family. As described by a review of Amy Tan’s work, they summed it up:

What is The Opposite of Fate? For Amy Tan, the opposite of fate is “choice, chance, luck, faith, forgiveness, forgetting, freedom of expression, the pursuit of happiness, the balm of love, a sturdy attitude, a strong will, a bevy of good-luck charms, adherence to rituals, appeasement through prayer, trolling for miracles, a plea to others to throw a lifeline, … the generous provision of that by strangers and loved ones”, and, above all, “hope”.

It is this hope that has driven me through the past decade…from the heartache of loss, to the joy of birth, and through all the highs and lows of being human. I also believe firmly that it is this hope that has landed me exactly where I need to be for my work – partnering with donors and scientists to create a world where no one has to worry about T1D.

From improving lives to accelerating cures, JDRF is on a mission and I am thrilled to be a part of creating a future without T1D. I know it isn’t fate that brought me here. HOPE. It is hope.