The Remembrance

I remember the drive home when the blind hope

Turned to crying and screaming, “Why?”
Flowers pile up in the worst way
No one knows what to say about a beautiful boy who died

By Taylor Swift and Maya Thompson

 

Courtesy of Crossroad Photography, Heather Kusunoki

Courtesy of Crossroad Photography, Heather Kusunoki.

Around October of last year, as we approached Halloween, a very difficult time for me as it was right there with Christmas as Jax’s favorite time of year, my mom emailed my wife and I a link to a song Taylor Swift performed about a boy with cancer. Swift wrote the song “Ronan” based on a blog Maya Thompson, the mother of Ronan, created when her 3-year-old son was diagnosed with neuroblastoma in August of 2010. Ronan died in May of 2011 three days before his fourth birthday.

My wife’s brother created a beautiful tribute video that we showed last night at Jax’s Remembrance. I’m guestimating about 100 people came to Mountain Gate Park in Corona to be together as a community to share stories, hug, laugh and cry.

Projected on to a make-shift movie screen (as you can see in the background of the photo above), the video wrapped up with “Ronan” playing as we watched videos of Jax performing for the infant twins and photos as we all last remember seeing him. The song crushes me every time I hear it. I managed to mostly avoid tears throughout the night until that song played. Even though I watched the video earlier in the day and wept alongside my wife, I still lost it at the park, standing in the background and swigging Macallan scotch from a flask while I wiped away tears. (thank you my very kind friend for sharing).

Courtesy of Crossroad Photography, Heather Kusunoki

Courtesy of Crossroad Photography, Heather Kusunoki

The best way to describe last night was beautiful. We gathered beyond the outfield fence since the Corona American Little League all-stars practiced on the large field. Blankets and camping chairs filled the grass area and children played wiffle ball as we listened to some good music and mingled with each other. The way the sun’s glow shined upon us as it set in the crystal blue sky filled me with warmth and peace.

My wife made some keepsakes for people to leave with. Maria, a mother of one of Jax’s t-ball teammates, created this beautiful graphic shortly after the event, displaying and engraved washer and a jack, our symbol for Jax.

Courtesy of Maria McRoberts.

Courtesy of Maria McRoberts.

Several courageous people stood in front of us all and spoke of fond memories, how Jax’s life and death has affected them and the love they have for our family.

Following the multimedia presentation we lit the night up by candle light. Following a moment of remembrance we released balloons. We invited people to write messages on some of the balloons while others came installed with a LED light and glowed red (Jax’s favorite color) deep into the dark sky.

Courtesy of Crossroad Photography, Heather Kusunoki.

Courtesy of Crossroad Photography, Heather Kusunoki.

The day wasn’t without any hiccups and stresses, but the evening came off as well as my wife and I could have hoped. Thank you so much to everyone that attended. We hoped this night would be for you as much as it was for us. We all continue to grieve in our own ways and doing it all together, I think, made it less awful.

Several of you asked about the “Ronan” song, so I’ll end with the lyrics and a link. While it’s written for Ronan, maybe you’ll think of Jax every time you hear it.

Jax – you were my best four years.

I remember your barefeet down the hallway
I remember your little laugh
Race cars on the kitchen floor
Plastic dinosaurs, I love you to the moon and back

I remember your blue eyes looking into mine like we had our own secret club
I remember you dancing before bedtime then jumping on me waking me up
I can still feel you hold my hand
Little man, and even the moment I knew
You fought it hard like an army guy
Remember I leaned in and whispered to you

Come on baby with me
We’re gonna fly away from here
You were my best four years

I remember the drive home when the blind hope
Turned to crying and screaming, “Why?”
Flowers pile up in the worst way
No one knows what to say about a beautiful boy who died

And it’s about to be Halloween
You could be anything you wanted if you were still here
I remember the last day when I kissed your face
And whispered in your ear

Come on baby with me
We’re gonna fly away from here
Out of this curtained room and this hospital gray
We’ll just disappear
Come on baby with me
We’re gonna fly away from here
You were my best four years

What if I’m standing in your closet trying to talk to you?
And what if I kept the hand-me-downs you won’t grow into?
And what if I really thought some miracle would see us through?
But what if the miracle was even getting one moment with you

Come on baby with me
We’re gonna fly away from here
Come on baby with me
We’re gonna fly away from here
You were my best four years

I remember your barefeet down the hallway
I love you to the moon and back

Songwriter(s):Taylor Swift, Maya Maria Thompson
Copyright:Taylor Swift Music, Sony/ATV Tree Publishing

Thank you Heather Kusunoki for the beautiful photos. You can find her work at Crossroad Photography.

Dreaming of the Sea

Written by Gordon Livingston

Written by Gordon Livingston

My therapist loaned me a book from author Gordon Livingston entitled Only Spring, based on the journal he kept after the news of his 6-year-old son’s diagnosis with leukemia and ultimately the agonizing cycle of faith lost and hope gained.

I’m in the faith lost part of it all in my life and I’ve forgotten the definition of hope. I mentioned my blog to my therapist so she told me about Livingston’s book. It seemed like a good fit on multiple levels. It only took the foreword to inspire me to share.

Written by author Mark Helprin – educated at Harvard, Princeton and Oxford and served in the Israeli Army, Israeli Air Force and British Merchant Navy – the foreword hit a nerve. It struck my longing to clutch Jax tightly once again.

Whether Lucas (Livingston’s son) rose into a world of light or was taken with a roar into waves of speeding darkness as if into the deep ocean, he went alone. The way I see it, he is either clasped tightly to the breast of God, or there is no God. One way or another, he has given his father, and in some respects all of us, a great gift. He has made death a prospect of fulfillment, an excitement, for what greater need is there but to find the lost child, or at least to chance that one may find him? If you were on a ship battered by immense waves (and, believe me, you are) that swept your child from your arms would you not (given that you had no others for whom to remain) throw yourself into the deep, hoping for the chance that in the vast black ocean you might grab onto him? Comforted just to know that you would suffer the same fate?

And if you had to remain, to protect others, would you not dream all your life of the day when, your responsibilities over, you would finally get to the sea?

I’ve mentioned before in this space that my wife and I no longer fear death, and Helprin’s words explain exactly how I feel. For now, we’re here to protect our twins. But I will dream every day of hitting that sea and feeling his little hands in mine again.