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Our Beautiful Birthday Boy

Dear Rett,

Today you would be 7 years old–Lucky 7. Seven is the number of completeness and perfection (both physical and spiritual). It is directly tied to God’s creation of all things, and is associated with a deep inward knowing–like what we saw in your eyes and your owl-like persona. In our world, you are one of the Seven Wonders and always will be.

Although you are no longer here, we’ll still take the time to celebrate you, even though it isn’t the same. Each year your birthday comes around and each year we’re blown away by how quickly time passes without you. As we watch your sister grow, you stay the same size in our hearts. We can only imagine what you would look like, how your voice would sound, how proud you’d be making us.

Please know we are ok. That we cherish and trust the signs you send us. Like last week, when I drove down to meet with our friends the Austins for an afternoon hike, the sun poured into the moon roof heading south on I-95. I felt warm and content–lucky even. Suddenly I noticed the license plate of the car in front of me… 4RT 222. I literally almost drove off the road. 4RT=For Rett, 222=the day you left this earth. Clearly you were telling us, “I’m watching over Evan Austin, I will protect him for as long as I can from that DIPG monster.” Or that’s what I like to believe.

Or yesterday, when your sister was outwardly expressing the eternal void of a bereaved sibling. Her sweet, social-emotional nature intuitively shines through during these days around your birthday and death anniversary. She cries over silly things, wants extra cuddles, and says “I love you” at least 70 times upon waking. Getting dressed after her tubby turned into spontaneous tears. As I hugged her tightly, acknowledging her grief, the fire detector nearby suddenly started blaring for absolutely no reason. “Hi Rett,” I thought. “Yes we see you. Yes we hear you.”

Last night, the eve of your birthday, was the brightest night so far this year as a Pink Super Moon filled the sky after sunset and into the early morning of April 27. You were born at 6am seven years ago and I feel the downward pull in my abdomen. The phantom limb of giving birth that any mother knows well. I know your cells are still within me–that an infinitesimal part of you lives on. And I feel utterly blessed to have carried you in my womb, nursed you at my breast, and held you for your last breath.

Your birthday buddy, your dad, feels this loss as deeply as Evie and I do. Each night he tirelessly lucubrates over his memoir of you–(he’ll love the big word, but I probably used it incorrectly)–a shrine to you his third eye’s focus, the ambient sounds of Brian Eno to pacify the intensity of this work. His discipline and determination an honorable expression of his fatherly love. He fills the chasm of your demise with words and sentences that ascend and blossom like morning glory, like the glory we felt the morning you arrived.

I will always remember fondly your first birthday–how is it we never even spent one together!?–at the monastery of Sant Benet de Montserrat in Barcelona, Spain. But I can do this sacred day no justice and prefer to share the beauty of what your dad wrote instead.

Montserrat steals our hearts more slowly, endearment swelled with every step and gaze around its sprawling crag-embedded grounds. It cuts an otherworldly stance even from afar, the mile-long tram from the mountain base bringing the monastery into ever-grander focus. An April Monday crowd makes for near-solitary walks along the trails surrounding the Abbey of Santa Maria, along which stands a series of modest shrines erected to regard the Virgin Mother, one every fifty or so yards. Beneath each are tiny trinkets or tokens of remembrance, candles melted to nubs and wax cascading off the makeshift altars. We time our hike to coincide with 12:22, the trio of threes marking the day of his death, at which point we’ll visit the closest shrine and honor his first birthday. Many have said the first will be the hardest, a warning we’ve internalized well enough to plan this cross-pond whirlwind. Though no amount of movement or views can fully thin the venom forever coursing forth: the fury we feel that he never knew the sound of people singing solely for him.     –Jim Cavan, When You Rise

We will forever know and love you, son, no matter how old we grow and how far from you we feel. Or should we instead trust the old adage, “we will meet again one day?” So that in essence, each passing day brings us not further but closer to you.

Love to eternity and back,

Your Family

301 Days & A New Year

While I wouldn’t say I’m completely in tune with the spirit world, Rett continues to knock us over the head with his signs. I find it fascinating that his angelversary last year was on the full moon and his sister was born on the new moon two weeks later. Full moons are all about letting go, new moons represent new beginnings. Rett lived exactly 301 days. Today, January 2nd, 2017** is the exact day Everly turns older than Rett ever was. While I am so grateful to have a healthy child now, it just doesn’t feel like this should be an accomplishment or a day to celebrate. Instead, I look at it as another sign from above. An evolution of sorts. Time to begin again at the start of a new year. Time to resolve to change focus, change paths—and feel good about it.

His birthday, the anniversary of his death, and Christmas will come each year, but this single moment in time is one that holds a lot of power. From now on we can’t really compare Evie to Rett. The approach of this imminent day affected me a lot, as I watched my daughter grow to her brother’s last age—becoming more and more mobile  and eating all kinds of food, two things Rett never got to experience. I remember just days before Rett passed giving him a fruit smoothie, and he loved it. That made me so happy. At least he got to taste something deliciously sweet once in his life. And while he could never explore from his tower of tubes and machines and medicines, he did learn to be a pro-bouncer.

As many bereaved parents will attest, year two can be even harder than year one. I have found this to be definitively true. Despite the bundle of joyousness that is Evie Jane, and the consistent success of Rett’s Roost, the last few months have been more difficult than we ever could have expected.

Let me explain…

Last summer at our first bereavement retreat, Jim made the difficult decision to accept a job in Chicago. It was a big deal to move our family out to the Midwest, but we took the challenge in our life as a leap of hope and necessity. It seemed this was the change we needed to move forward in our grief. Jim was hired by Time, Inc/Fansided because of his edgy, eccentric style of writing, as well as his attention to detail (ie., grammar policing). We know that they were happy with his work from the beginning–writers liked him as their editor-in-chief, his officemates enjoyed his presence, and the website was getting more traffic than before.

Suddenly, however, hope all came tumbling down, after he published a piece that received a miniscule amount of troller backlash on Twitter. Without any warning, someone high up a Time Inc pulled the plug on Jim’s position. We’ll never understand why this happened, since no one at Fansided reached out to speak to Jim about why he lost the job we moved halfway across the country for after two months of honest, dedicated effort.

So as the anniversary of Rett’s diagnosis and major surgery passed for the second time, and the holidays came and went without our two year old son, we faced another major decision and transition to leave Chicago. It’s been so hard to pack up (again) and leave a city that we were really excited about making our home. The fall in Chicago was beautiful, the Cubs won the World Series, we loved our neighborhood and exploring all the other pockets of culture and delicious food. Evie, and even Lulu our dog, seemed to fit right in to an urban lifestyle.


It’s tough to look past the stream of bad luck that has cursed us ever since Rett’s cancer. Sadly, it feels like we are still living in its haze of suffering. We really don’t want to reach out to our community for more sympathy, since you’ve all given us so much of your love already. But our story must be told. Jim has stayed quiet about this loss but the pain that this huge corporation caused our family is immeasurable. And I just wish that whoever made this impulsive decision from their corner office in NYC could feel themselves the stress we have felt.

After losing Rett, I picked up my shattered heart and kept going. I started Rett’s Roost and brought another child into the world. I’ve heard so many times, “You are so strong.” While I do take that as a compliment, I know in my heart it’s not always true. This fall has been a true test of my strength and faith in goodness; I still feel beaten and bitter. I’m not any stronger than any of you. You would all have taken care of your child like we took care of Rett and you would all have carried on if you lost your child like we did. I live in a world of bereaved parents who did exactly what we have done. Sadly, we are not a rare breed (7 children die of cancer each day in the US).

I want to believe that we can create a better reality just by focusing our mindset on what we want. But, in these last two years, I’ve met so many people that are also living through tragedy and bad luck. Many of these people already live a life of good deeds and positive thinking. So, in my mind, I oscillate back and forth–observing how unfair life is and adjusting my negative reaction in the present moment to focus on a brighter future.

I’ve seen many people commenting on social media about how difficult 2016 has been. All the influential people we’ve lost and the surprising election result are universal examples; but I even feel on a personal level that the cosmos have been misaligned for most. Even though Jim has to remind me again and again, I know we are all in this together and that he and I aren’t suffering alone.

Our wonderful Rett’s Roost photographer, Caitlin, posted a Rumi quote the other day, “You have seen my descent. Now watch my rising.” I can’t say when that rising will occur, but all I can do is envision it happening now, as we embark on 2017, as our daughter continues to thrive. This significant day when Evie outlives Rett is hopefully a turning point for us. I’m trying to look at it that way. It’s also a new year, where my intention will be to create the life I want to have by shifting my perspective to what could be rather than what is not.

Our little detour in Chicago was not easy, but it was an adventure. Hopefully we can look back on it in a few years and realize that this suffering we endured was only a glitch in achieving the life we deserve. And that our efforts to be good people, with open hearts, close friends, and a modest life will eventually create an easier path forward. I am certain our family will get through this time and emerge in a place of solitude, for a while at least. Please, hold us in your hearts until we are there.

**Also, a little numerology fun on this day, 1/2/2017 = 1 + 2 + 2 + 0 + 17 = 22!