Acknowledgments
Our family is blessed to live on the Island of Pesamkuk, one summer home of the Wabanaki people.* Some of the beaches near our home are shaped by smooth rocks that tumble with the tide, a sound that soothes my soul.
Can you imagine a beach full of stones, each stone etched with somebody’s name or some treasure we received for which we are grateful for on this journey through Childhood Cancer? Our gratitude for the ‘Community Coast Guard’ that held us during our journey, if spelled out, one name on each rock, would cover the beach, layers deep. Some of the rocks, through tumbling, may lose their definition. Now imagine capturing all those stones onto an acknowledgement list… how will we possibly round up each one?
First may we thank all those whose names are already faded: the anonymous donors, the foundations of support, the uncountable people ‘behind the scenes’ in all the arenas, as well as those in concentric circles round the globe praying. Anyone and everyone who shed tears when they heard the news (as we believe in the necessity of releasing grief to nourish the cycle of life!) The supply chain people who filled orders and the delivery drivers who got Haji’s meds and supplements here on time, week after week.
Next, our deep appreciation for all involved on the Western medical front: our oncology and orthopedic teams both at Northern Light Eastern Maine Medical Center and Boston Children’s Hospital/Dana Farber: Dr. Mazzone, Dr. Raulji, Dr. Santa Cruz, Dr. Casstrucci (& James!), Dr. Anderson, Dr. Janeway. Dr. Brewer and Dr. Yardley.
Extra gratitude to the Infectious Disease doctors: the life-learners, the deep listeners. On the one hand, they delivered the disconcerting news that how much they know is minimal compared to the vast unknown. Together we sank into the mystery and made the best possible choices at the time. On the other hand, by allowing the mystery of the unknowns they also welcomed the possibility of miracles. Conversations with you built trust, sustained our faith. Thank you, Dr. Mary Herbert-Grant and Dr. Kohler (and team).
The Pharmocogenetic team at Boston Children’s Hospital, particulary Dr. Shannon Manzi. May the day soon arrive when all people undergoing intensive medical interventions have access to pharmocogenetics, as part of the protocol. May protocols evolve to create variations for people who deviate from bell-curve norms!
Much gratitude to Northern Light Pharmacy at the Brewer clinic: in particular, David, Ivy and Leebra – something you exude there brings comfort and acceptance. Also, Lyn greeting us at clinic, you offered us calm reassurance, even when I arrived feeling frazzled.
Three cheers to all the nurses, the valet parking crew, the folx in registration. The Northeast Harbor and Northern Light ambulance drivers, EMT and ER staff in both hospitals. To the essential workers who clean the spaces we dwelled in, especially those of you in Boston who traveled there from faraway lands, shortening your treasured names so that inattentive Americans could call you by new, concocted nicknames. (How interesting that our ill children are given multi-syllabic named medicines, and we can rattle those off almost unconsciously: methotrexate, fluconazol, levofloxacin, but can’t (won’t) take the time to learn the true names/pronunciations of the people around us! Gratitude extended to those who were willing to share their true names with us.
Thank you to Cindy, you entered our room to grab the trash and wet mop the floor and left rays of sunshine that lifted my heart for the rest of the day: you were the first angel who showed us we were still safe, even if we felt so far from home and the familiar. Thank you, Child life specialists, Dale and Betsy at EMMC. Thank you to the physical therapists, at both hospitals (Hannah, Bethany, Richelle), Somesville Rehab (Jean, Cora [&Brenda!]), and the ones who visited us at home (Ynez – PT: Sarah & Nancy, visiting home nurses). (I’m afraid I’m missing some names, here, there are more of you!) One person’s name I regret not writing down was in the surgical recovery waiting area at Boston Children’s Hospital. During the first emergency surgery, I was an inconsolable wreck (expecting the worst). The kindness I received grew with the familiarity. (Four surgeries later I was more relaxed, and better able to appreciate the space this person held for all of us in the waiting area.) Thank you. Thank you to Mount Desert Island Hospital for our brief stay there post-chemo when Haji fell and broke his other leg and wrist. Also, thanks to both the Ellsworth ER and the Ellsworth Mary Dow cancer clinic (for changing port needles when Haji was well enough to no longer need home nursing, but still needed outpatient care.)
Sometimes the sense of connection surprised me, how easy it felt to be with our many caregivers. Our home medical supplies were provided by a company called Coram. Two of the people from Coram stand out: in Boston, Liane visited our home-away-from-home-apartment and spent about five hours training me to give Haji IV-antibiotic infusions. After we returned to Maine, Monica from Coram checked in on us via phone to make sure we had all the supplies every single week. We often had kind schedulers assist us through Logisticare. Our Nurse Case Manager, Kate at Anthem called throughout treatment and celebrated with us when we no longer required her services.
Here are some of the foundations/organizations we’d like to thank, this list is definitely not inclusive (& I will add to it as I recall more!) Angel Flight: thank you for the amazing trips to Boston.
Make-A-Wish: you expanded the limits of our imagination, both in how a wish can make a difference in the healing process, as well as in how wishes can be granted.
Katie Beckett Program, Brennan’s Buddies, Maine Community Foundation, Beth Wright Cancer Center, MBA Open Doors Foundation, and Cops for Kids with Cancer: you remind us that we are not alone and how much people care. Thank you. Hospitality Homes: you found places for us to land in Boston that accommodated my chemical sensitivities, and special thanks to Diane and Randolph for sharing your amazing home and garden with us for our extended stay.
Closer to home we felt supported in the healthcare realm by Dr. Seed, Tammy Thomas, Dr. Curtin, Dr. Lang, Satya Kaur Khalsa, Holly Cozzi-Burr & Rose Iuro-Damon.
Milja, Dawn, Sarah, Hayley, my ‘Compass Rose’: thanks for keeping me focused on strength and resilience and along with Siri, for holding space for me to muck through when I felt lost. I wouldn’t want to be here on earth without you.
In the social/spiritual realms both in Bangor and Boston, thank you Carolyn Wills-Barberi, Tammy Buck, Christine Brown, Diane Arnold, Charlotte Matthews, Kara Belinsky, Rabbi Susan Harris, Chaplain Melissa Vela, Shari Mendler, Joe Chabot. All the energy healers! And at Boston Children’s Hospital the massage therapists and Reiki practitioners.
Donna Hanke, thank you for showing up and offering to set up a Lotsa Helping Hands site for us. And thanks to your family and Clara for the courage to persevere. Thanks to all who signed up on the Lotsa Helping Hands and brought us meals, offered your listening ears, helped us rearrange and clean our home, offered rides, served as ‘The catchers’ to be here when we returned from the long hospital stays: Emily Lamson, Hayley Merchant, Sarah Tewhey, Susan Sassaman, Leanne Nickon, Shira Singer, Jeanne Seronde Perkins, Jane Disney, Tricia Rouleau, Carolyn Gray, Gray Cox, Anna & Ralph, Joelle Nolan, Jessie Greenbaum, Rob Levin. Aaron Mitchell’s family and Jen Judd McGee’s family for checking on our cat, shoveling. Aaron Sprague for your visits with Haji while he played video games. Leanne, Shira, Jeanne, & Jane thanks for making extra time week after week to respond with your loving nourishment. Sean Murphy, for reminders of our Cosmic nature and keeping me connected to that by encouraging my tears! John Powell, thanks for the decades of keeping our favorite place to stock up on provisions open, John Edwards Market, and for the weekly chocolate bars while Haji was going through treatment.
My community of dear friends for love and prayers. Joe & Aylene Cistone, Lee Maldonado and Seaside UCC congregation. Polly Converse, Anne Smallidge, Jen Vinck & Oonagh Elisa Hurley: the love you consistently send! To everybody who sent mail: letters, books, treats and treasures! Thank you to the teachers, staff and students at MDI High School. The posters of encouragement decorated our living room, and we are still baffled by the donation the boat-building class made of a BOAT! to the fundraising auction. Thank you, Steve Keblinksy and Haji’s boat-building class.
The crew of people who BUILT A MUDROOM ADDITION onto our home while Haji was having his first surgery, so by the time we got home he could get in and out of the house in his wheelchair. The carpenters who took the door thresholds off so the wheelchair could go into all the rooms. The crew who rearranged our home so Haji’s bedroom could be on the first floor.
Melissa and Mercedes for being in my heart at the first phone call, and then Melissa for all the support: starting the gofundme and getting Haji a new chem-free bed and assuring me that it was okay to ask for what we needed.
Tom Brown and the Brown family, especially that day in the library when Tom reassured me that Haji would be fine, “All I ate was popcorn for two whole years, it will be okay.” Kelly Brown, you offered familiar comfort as part of the NEH Ambulance crew when Haji had his post-chemo bone-breaks.
Appreciating those who know the comfort of blankets: Claire Woolfolk, Lisa Bates and Philip Drew for the handmade quilts, blanket; The Berger Strainchamps family for the ShaeD Gata blanket; All the organizations that make quilts and blankets for kids showing up in the ER.
To those who were able to visit, (I’m ever grateful that Haji’s hospitalizations ended before the pandemic started) your visits kept up my spirits: Zephyr & Al, Josie, beloved Mollusc: the Bivalve of Greatness, Tami Willis, Linda Gregory. Dear Lucus, for your incredible capacity for holding space for Haji and I when he was in so much discomfort. Jaiji & Sage. Benton Thomas, you are the best of kind of friend, thank you for sticking by Haji’s side from the beginning. The Landis Family. Balmeet. Stephanie, Nessa and Atma Karam for extra inspiration and trust. Terra for the trip to Millis. Siri Sevak Kaur, Dr. Sham Rang & Arjan Kaur for the night infusion assistance! Dear Jooles, for continuing to accompany us for every scan day and getting us outside in both Bangor and Boston.
Ed and Mike for celebrating the last dose of chemo with us and moving us out of Boston Children’s Hospital!
The other parents I met, both in Boston and Bangor who remind me to keep alert to taking anything for granted. Jenny and Brayson, your friendship goes well beyond the 8th floor of EMMC, for that I am grateful.
To all the people who quietly held space for us: I felt it every single day, it’s what got me up out of bed in the mornings and kept me going when the hands on the clock no longer made any sense at all. Thanks, Brenda Cartwright, Satya Kaur Khalsa, and Maryellen Danehy, for sharing our story with your healing prayer groups.
Our family, holy cow! The meals, the coordinating, the hospital visits. I feel especially blessed that we had the Berger-Strainchamps family to accompany us through the extended Boston visit. Nancy, as the matriarch of our family, thanks for prioritizing so much connection amongst us. John, Lyn & Lucian, Mike, Emily, Max & Caera, Joel, Chris & Ryan, Ali, Rene & Nat. John and Jan for your bi-annual visits. To all of you here on the island and northeast, it’s especially comforting that you are such a significant part of Haji’s life. For our family who lives far away: Heath, Beatrice, Melania, Hudson, Bob, Marg, Lisa, Dave, Sarah, Monica, Lloyd, Sylvia, Mark, Beth, Jessica, Christine, JJ, Rob, John, Declan, Dede, Erica, Rosemary, … I imagine it must have been hard to be so far away. Maryellen, thanks for your offer to travel from California to assist us during our summer in Boston. Thank you all for the love and support that you sent us. Dad and Joanne, thanks for the 2021 visit and for appreciating the art and poetry.
Mahan Deva, Puranjot, and Julie Havener: the fundraiser you organized at the Neighborhood House, plus all the folx who attended and offered their gifts and love, music and food. Kate Henry for delivering 1,000 cranes that were made at the Southwest Harbor library.
Dear Richard Sassaman. Even as I write these words, I feel your guidance and nudges. I miss you.
Guru Meher and Emotional Liberation Course crew, with special love to Anna Sach Kiret for visiting us at Boston Children’s and introducing me to Bella & Lukie.
Chaz & Harrison for my first post-treatment vacation in LA and Joshua Tree. I relaxed so deeply while I was visiting.
Max Strainchamps, thanks for the photo on the back cover of the book! Bob Covey, for assistance with layout design and editing. Josh Winer, for taking the photos. Candice Stover, for the hours reviewing the manuscript with me word by word. Sach Kiret, for your editing prowess and support with connection outreach. Jeanne Seronde Perkins, the cornstarch recipe! You’re embedded in so many of my artistic endeavors. Lee Ann Hilbrich, for your 100 Days of Creativity Course, which gave me impetus to work on this every day; and to Catherine Bane Rumph for inviting me to sign up and join that creative community! Emily Bracale, inspiration on so many levels, plus practical assistance from watercolor painting to matting and framing prints. Your book, Our Last Six Months offered me comfort at times when nothing else did. (May both our books offer comfort to others in the future.) Gregorios Emmanuel for your enthusiasm and friendship. Carol Shutt, your online Pandemic video demonstrations inspired watercolor and collages! Dawn Nuding, for witnessing my creative process unfold and encouraging me all along the way. Julie Beckford, for wanting to hear the list of words, on one of the many scan days you attended with us. Siri Temple, the ways you’ve received my written & spoken words for so many years. Milja Brecher-DeMuro for the deep listening and consistent reminders to trust. Sarah Tewhey for insisting that I’d already written this (and other) book(s). Again, Dr. Christy Seed, Kari Guillen, Steph Swett (Sweet Smiles!), Jean Johnson and Cora Fahy for supporting my physical health as well as Haji’s.
Sue Aripotch for walks and conversations, especially the night walks to the sea, where we witness the stars merging with the water and the magic of phosphoresence! ALSO, for showing me the kedge anchor in the heart of our town!
The Northeast Harbor Library for inviting artists in our community to display our work! And thanks to everybody who pre-ordered copies of this book!
Nan Black, beloved nonagenarian, calligraphy teacher, life mentor. Thank you and Coby, Susan, Lisa and Tia, and your whole family for allowing me so much time at the Pond House to restore and write, especially during the summer of 2020, but all the years before as well. Coby, thanks for inspiring the book’s introduction and for all the words you’ve published over the years. Special thanks to Ursula for the exquisite friendship that words fail to describe.
Dear Pocket (Mindy, Hayley and Jen): thanks for holding gracious space for me through these final phases of getting this project into the world. And thanks to Paige and Kari for joining in to offer end-of-project support (and more!) after the book went to the printer.
Finally, for the three people closest to all my endeavors:
Rosie, for surprising us for Haji’s 15th birthday (you arranged and flew across the country without letting any of us know! The next day, even though he’d had chemo, he said, “That was the best birthday ever!”) Thank you for your courage and your steady, shining light, and the ‘Cool Doodler Sketchbook’ gift that activated my pencils!
Kyle, for choosing me, partnering through parenting and beyond.
Finally, thank you Haji, for this opportunity to be your mom. I love you with every fiber of my being.
With effervescent love,
Lelania Harpal Kaur Avila
* When I originally wrote this, I was looking for a respectful, genuine way to include a land acknowledgment. I’m still finding my way. Today I might not have the words, but I’m looking for them. In the meantime, I’m continuing to learn. Here’s a link to one website that I’m learning from. Please join me in finding ways to genuinely repair centuries of harm to BIPOC. I trust that every movement in that direction brings us closer to the world where we all can thrive.
https://nativegov.org/news/beyond-land-acknowledgment-series/
P.S. Copies of the book are now available! If you pre-ordered, expect yours to arrive by the end of December 2021. (Hopefully sooner, I’m just a bit slow sometimes getting things into the mail!)
