When our family left Alaska in April of 2006, to bring our son to Lucile Packard Children's Hospital at Stanford University and Medical Center for a much needed, life-saving heart transplant, we truly believed that we would be gone for eight months, at the most. Shawn has now been waiting two years and almost three months.
As a family, we are so grateful that our son is a candidate for a heart transplant, and that he is still here with us. However, the fact is Shawn's heart failure is advanced, and it is absolutely heartbreaking and agonizing to watch our son get sicker and weaker before our eyes, knowing without a transplant, our son will die.
As a family, we have so much anxiety, and frustration, and we have NO control over any of this, we feel isolated, scared (terrified) and broken. I think people assume when they hear that Shawn's been waiting for so long, that he/ we get to go home, which isn't true. Shawn's daddy, George has to stay home to work and his sisters, Amanda, Sam and Haley are able to go back and forth. Shawn and I, his mom, haven't been home, not once.
There isn't a word to describe that kind of loneliness, that level of homesickness. Sadly, the wait doesn't get easier, it just doesn't, you don't Ôget used' to it, if anything, it gets harder and while Shawn becomes weaker, we are feeling more desperate.
In all of this, we are emotionally broken and financially devastated. Even with insurance and planning and budgeting, everything is expensive and it is immensely difficult. We've had to refinance our home, cash out our retirement accounts, and there is no end in sight. To have our community, many people that we've never even met, come together to raise money for our family for the single purpose of relieving some of the stress, some of the burden is incredible. The fact that so many people have done so much for us is astonishing, and to say I am awestruck often...is an understatement.
I read a quote recently that said, “I would maintain that thanks are the highest form of thought; and that gratitude is happiness doubled by wonder,” by G.K. Chesterton, and I thought it seemed accurate. We are grateful beyond words, and surprised and completely amazed.
I first want to thank Diane Mucha, who I swear retired from teaching, then took on the full time job of organizing the auctions and fundraisers for our family. You truly are an angel on Earth. We will never be able to truly express our gratitude and appreciation.
The Lions Club (Steve Grohol, Gary Washburn, Sandra Wilson, Chuck Thomas, Jerry Wasson, Gerry McIntyre, Terri Gallant, Bruce Morinitti, Lloyd Shanley, Charles Eddy, Gary Washburn, Lloyd Shanley, Chuck Ducharme. Board of Directors: John Tomson,ÊPat Mahoney,ÊTodd Gallant, Tin Star Jex) for generously hosting Shawn's auction and for doing so much for Shawn and his family.
To Mended Hearts and Mended Little Hearts (Cardiac support groups offering help, support, and encouragement to heart disease patients - adults and children - and their families).
To Goat and Jimmy (KASH 107.5 Morning Moo) who were the auctioneers again. You two have the biggest hearts and are so genuine and kind, and we are honored that we know you.
Eagle River High School Air Force Junior ROTC cadets for helping with carrying the items from the trucks into the building and setting out all the items on the tables in the correct order. Chugiak Naval Junior ROTC cadets for helping set up the tables, chairs, tablecloths and posters on, and for working the auction.
Mike Martinson (Director) and Eagle River High School Jazz Band for being there and the great music
Thank you to the Donors: ASAP Printing, Accent's Hair Studio, Ahrens Family, Alaska Aces, Alaska Auction, Alaska Aviation Heritage Museum, Alaska Children's Heart Center, The Alaska Club, Alaska Herb Tea Co., Alaskan Leopard B & B, Alaska Mill & Feed, Alaska Native Heritage Center, Alaska Outdoors Television, Alaska State Fair, Alaska Wildland Adventures, Allure, Terry Alter, Anchorage Bucs, ÊAnchorage Fire Department, Anchorage Glacier Pilots, Anchorage Lutheran Church Women's Guild, Anchorage Opera, Ann Anderson , Arctic Circle Enterprises, Art With a Past Life, Artique, Artworks Gallery and Glass, Gail Bailey, Bear Tooth Theatre Pub, Jacob Bera, Body Shop at Home - Nikki Strzempka, Dona Brekke, Brecht Studio, Yvonne Brunsting, Rodney Clark, Carol Comeau, CarQuest, Chill Out! Parts & Equip. Supply, Chugiak Lions Club, Clear View Window Cleaning, Ron Crowl, Larry Csonka, Nancy Dahlstrom, ÊStacy Dayley, Denali Raft Adventures, Dentistry for Children, Monica Devine, ÊDianne's Restaurant, Eagle River Lions Club The Flutterby Studio, ÊJayne Forston, Fur Rendezvous, Glacier Brewhouse, Scottie Gomez , Kris Green, J ackie Gunnarson, H2Oasis, Harry J. McDonald Memorial Center, Hilty's Cabinets, Jo Hobbs, Iditarod Headquarters, Houghton Hill Jewelry, T he Jewelry Cache, Joey Jigliotti, KASH 107.5, Kenai Fjords Tours, Carolyn Knowles, Kremer Chiropractic Clinic, Janet Kuykendall, Learn 2 Swim, Aida Lissi, ÊMajor Marine Tours, Jeff & Mary Manes, Mary Kay - Sandy Grabowski, Massages 4 You, Lisa McCormick, Colleen McGeorge, McKinley Fence Co., Mended Hearts (Ron Crowl, Rae Foutz, Dan Grajex, Sherry Hartung, Peggy Mertz), Mindy Meyn, Midnight Sun Paragliding, Michelle Moore, Morgan's, Diane Mucha, Musk Ox Farm, Ruth Nagel, Orso, Palmer Golf Course, Papa Murphy's, Raramount Cycles, Tony Perelli, Phillips Cruises & Tours, Piccolino's Restaurant, Picture This, Portell Family, Radio Shack, Ginette Raygor, Dave Reeves, Renown Tours, Red Robin, Rust's Flying Service, Sacks Cafe, Scandia Down, Ed and Jaime Scherer, Sea Galley, Shear Bliss (Teresa Hufford, Laurie Snider), Sheraton Hotel, Shimeks, Silverhook Coffee, Sleeping Lady Mountain Lions Club, Blake Smith, Snow City Cafe, Sona Vita, Spenard Builders Supply, Stipple Yourself, Stockburger Arbonne, Paul & Deb Stockburger, Stone Soup, Mary Sundt, Super Suppers, Lynn Swanson, Tastee Freez, Thais Thomas, Louise Tolleson, Majel Toyofuku, UAA Athletic Department, Cindy van Haastert, Vibe, Virtu, Wal-Mart, Beth Williams, and Roy Williams
Thank you to all of you who volunteered: Caroline Ahrens, Tanya Bell, Aurora Blucher, Amanda Bradley, CHS Naval Junior ROTC (Kalei San Nicholas - POIC, Justin Gregg - Asst. POIC, Amanda Clifton, Sarah Cowitz, Nicholas Dale, Sarah Dirkes, Kristin Demott, Rebecca Gonzales, Daytyn Hall, Justin Householder, Dani Lewis, Richard Neal, Gage Philpot, Bree Williams), Deb Crowl, Ron Crowl, ERHS Air Force Junior ROTC (Cameron Bell, Marcus Foster, David Greist, Tony Hicks, Brandon Mardis, Samantha Matthews, Ben Miller, Thomas Morneaa, Jemmy Reeves, Nathan Shedd, Forrest Sikes, Zack Warners), ERHS Jazz Band - Mike Martinson, Director, Paul Foutz, Rae Foutz, GOAT, Steve Grohl, Sherry Hartung, Denise Hembach, Joel Hembach, Shawn Johnston, Lynn Klippel, Carolyn Knowles, Marsha Meunier, Nicole Moore, Kim Moore, Diane Mucha, Jimmy O'Brien, Jenna Pereira, Eli Portell, Katy Portell, Leila Portell, Ralph Portell, Autumn Porter, Joyce Simmons, Richard Simmons, Jayson Smart, Laurie Snider, Sheila Sparks, Louise Tolleson, Majel Toyofuku, and Ramey Weaver.
I also wanted to mention an extra thank you to Mary Rall, Sally Foo, and everyone at Alaska Star, Kellie Allen, Kelsey Gryting-Lien, Terry Gryting, Dan Lien, tucker Gryting-Lein, David and Becky Beckett and family, the Nyikos family, Dave, Stacy, Emily and Alex, Alice Kisner and everyone at Career Academy, Anchorage, Kevin Dougherty, Pregnancy Resource Center, Blake Vogt, Dr. Scott Wellmann and Alaska Children's Heart Center, the Hayes Family, Esther, Derrick, Tristan and Madison, George Bryson with the Anchorage Daily News, The Snider Family, Stan, Laurie, Thomas, Alana, the Mathes family, the LaPlante family, Jimmy, Conni, Austin, Katy and Emma, Jason Moore, Scott Jensen with Channel 2 News, Lake Otis Elementary, The Simmons family, Jim, Roxie, Jake and Julia for everything that all of you have done for our family while we anxiously await Shawn's heart, you have all helped us in more ways than I can say.
If your name isn't listed here, and you volunteered at Shawn's auction or sent cards or messages, please accept my apology, it isn't that we don't truly appreciate it, I'm just not the most organized.
As difficult and unpredictable as this journey has been, we have been so blessed to be supported by our friends and family at home. How lucky we are to live in a community that cares so much and is cheering on our son, and our family as a whole.ÊWe can't wait to be home in Eagle River with all of you, and somehow show you just how much we appreciate you and all that you've done. We have been moved to tears many times by the love, care, support and genuine concern that our community has shown us. Just know your concern, cards, messages on Shawn's Web page, your financial support has made a world of difference to our family and has made this time much easier. For that, we could never, ever thank you enough!
I'd also like to take a second to thank all of you including Patrick Sullivan, Chugiak-Eagle River UAA campus and everyone involved with Chalk-a-Palooza at the Bear Paw Festival and Kim Moore, Assistant Manager, Gary and everyone at Carrs-Safeway who has dedicated the Bear Paw barbecue to our Shawn. You are all incredible. We appreciate you more than I can say. Thank you. We were there with you in spirit.
For now the wait continuesÉ
With all of our family's love,
ÑTrista Stockwell
Married to my George, mother to our 3 girls, Amanda, Samantha and Haley, and our incredible, Shawn, born with Hypoplastic Left Heart Syndrome, post-Fontan (April 2002) diagnosed with Protein Losing Enteropathy after Fontan (July 2003) listed for heart transplant at Lucile Packard Children's Hospital at Stanford April 14, 2006. Shawn has O- blood and is considered a 1B status.
