*Red text: from Becca's journal *Black text: story by her parents
“Yes there is suffering with my illness but it helps me cope with it all if I remember that some of the most important parts of my life have come from my illness.”
Our Becca was born October 9, 1992 with Tetralogy of Fallot, MAPAC’s Pulmonary Atresia, and Pulmonary Hypertension.
She entered our lives and our hearts through adoption a month later.
Becca was petite, beautiful and fragile. We were told she had a 13% chance of survival to the age of 5. At 3 months, Becca began to struggle. Hospice was called to help us through the darkness. At 1 year old, Becca surprised everyone when she graduated out of hospice.
"If Children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but to HOPE? We have two options, medically and emotionally: give up or FIGHT LIKE HELL".
Life for Becca brought many joyous peaks and terrifying valleys.
“Life as a Chronically Ill Teen and Young Adult is not what people think it is. It is a sad, miraculous, triumphant, dis-heartening and frightening life that we live... “
After surgery at 13 months, Becca was placed on ECMO, at that time something very new.
At 26 months old, she had high risk surgery out of state.
At 5 years old, we were told by her medical team in AZ, a heart-lung transplant somewhere in the future would be the only thing that might save her life.
First of many fun trips to the Oregon beach. “You wouldn’t have a clue based off my medical records that I love swimming and traveling during the summer, or that I love getting Wild Mountain Blackberry ice cream from the Tillamook Cheese Factory in Oregon.”
Heart camp for the first time.
“We bonded with songs, dancing, and laughter. For five days out of the year, we were all "normal".”
Joined a Sign language choir.
Went to New York to see the expert in the world in pulmonary hypertension in children. This second opinion improved Becca’s length and quality of life dramatically. It also sparked her love for Broadway shows.
“I love musicals.”
Member of the Children’s Advisory Board at our local children’s hospital.
At 12 years, Becca’s care was transferred to Lucile Packard Children’s/Stanford, for surgery & amazing PH team closer to home. “If it weren’t for my “village” and my wonderful family, I wouldn’t be alive today.”
Arrhythmias began. Pacemaker/ICD placed and EP team added to Becca’s doctors.
“Each time you get bad news you have to go through the healing and coping process all over again.”
Started a blog.
“I want to take my feelings and gift for the written word and transform lives and bring awareness to these diseases. I hope to impact people and let others know just how truly special people who are chronically ill are.”
Spoke several years to 6th grade & middle school students.
"I also talk to them about how even though being sick is hard on both my spirit and my body; it can and has been just as hard; if not harder, on me emotionally. I explain to them that it's hard to miss 2 or 3 months of school to begin with, but to come back and not have kids be as understanding as they could've been was even harder. I talked about how kids would give me dirty looks in the hallways of 8th grade when I had to wear oxygen at school. I talked about all the comments about my scar that I have gotten this year. I told them about a man in San Francisco who called me a spoiled brat for sitting in a stroller in 6th grade because I was too sick to walk. I explained to them that you can never know someone's story unless you get to know them and ask questions; but be sensitive about it. “
Graduated from high school. Presented the Person of Character Award.
“Try not to worry as much (despite how scary it is) and live your life. We truly only get one chance and we understand that more than anyone else. So when you wake up in the morning, smile to yourself and remember 'I made it to this day, I can make it to the next.”
Became a paid speaker on anti-bullying.
“Encourage not just your kids but the people in your life to be a kind, understanding and loving person because no one deserves to be made fun of. No one."
Community college. Earned her Diploma with honors.
“I love learning”
“This is your journey and you deserve to be treated with compassion and empathy even if you are no longer a child.”
Two surgical pacemaker battery replacements. Two trips to Hawaii.
“I have learned that if you spend your healthy days worrying about when your next sick day is coming, you wont be able to enjoy the life you have fought so hard to keep.” Disney Alaskan Cruise. Disney Caribbean Cruise. Several Spring Breaks with friends at Disneyland.
Realized a life long dream of becoming a counselor at heart camp.
“At camp kids get to go horseback riding, canoeing, swimming, zip-lining and a whole bunch of other "normal" kid activities. For 5 days out of the year these campers are surrounded by other kids and adults who understand what it is like to live with CHD. They are no longer the odd man out or the "sick one" of their peer group. The lives of these campers are drastically changed after camp, I know mine was. And even as a counselor my life changed after camp. I got to see young kids fill up with hope, overcome obstacles and realize their own self worth. It is the most rewarding thing I have ever done in my whole life.” Helped in planning camp, securing donations and running their social media.
Becca was in and out of Lucile Packard Children’s Hospital the last year of her life.
“Flying to up to Stanford tomorrow. My stomach has that painful uncomfortable full feeling that it gets when I am water logged. I’m not sure if this is just because I had a bad chest cold a few weeks ago and things just snowballed from there or if it’s my PH just naturally getting worse. What I do know is that I am scared.”
April 2018 - Becca to see her LPCH team.
“Can I just be better already?”
The end of June - Becca was back at Lucile Packard Children’s (LPCH).
She was hopeful, we were all hopeful…
“It’s amazing how one thing can evoke a whole spectrum of emotions, from relieved to being terrified at the same time.”
Becca spent her last 3 ½ months in the hospital-
700 miles away from family and friends.
Becca let her Light Shine in young CHD patients’ lives by playing games, helping at the hospital school, and becoming a special friend to a 9yr old boy waiting for a transplant.
Doctors and nurses thanked her for teaching them about living, dying and finding joy.
Becca took her last breath October 12th, 2018.
“Life, the fact that everyday I wake up alive and go through the day is the greatest adventure. Being born with a heart and lung defect was thought to be the death of me. But in my eyes it has helped me thrive and grow towards the human being I want to be. I wouldn’t change anything about this adventure I call life because it’s what I live for.”
My friendship with Becca began at a zoo. She was one of those second-glance girls who go around beaming at the world and picking friends up like flowers. I'll never understand these types, the anti-cynic. The world can be unrelentingly cruel and even though Becca was more familiar with its injustices than anyone should be, you'd suspect the polar opposite from anything but her blog, Life As A Chronically Ill Young Adult. So she enchanted me as she's enchanted countless others and we were able to do a lot together in the proceeding few years, though not nearly enough.
Yesterday we celebrated her life.
There were bookmarks and Christmas socks for party favors, which I'm sure she'd be pleased about. Though I can hear her sarcasm from here - "You think I'd be pleased about my /funeral?/" Well, alright, no - but the whole thing was excellent and there were a lot of cool people there because Becca was cool and we could never get enough of her.
I tried hard to convey to her in person how much she has meant to me, how lucky I've been to learn from her the meanings of the words friendship and empathy. I do wish she were able to know the true breadth of her impact in that regard - how the hundreds of us yesterday are just a fraction of the lives she happened to alter, and how deeply entrenched she is in many of us. But the meaning of Becca's life is not just the meaning she had to us. She had her own goals, dreams, and fears. She wasn't afraid of the normal stuff like public speaking or skydiving (though she never could) or approaching strangers, but the big stuff; of dying, of being forgotten by her friends. She had dreams. She wanted to have a family, she wanted to visit all of the countries her siblings are from, and perhaps most of all she wanted to go to Disneyland a thousand more times. It is an injustice that life did not afford her these basic opportunities and I've never been more angry about anything.
I was lucky to spend a few weekends with Becca in the only hospital in the world equipped for her where she spent the last four months of her life, almost a thousand miles away from family and friends. I've never enjoyed a trip as much as those weekends with her. We talked and cried and held hands, but we also played games, laughed, made fun of each other. I saw her either charm or sass every nurse and doctor who came through her room. Her dad and I watched in awe and terror when she insisted, despite literally risking her own life, in doing what she's always done best - entertaining her visiting friends by giving them a tour of the hospital.
I won't ever be able to repay Becca for the perfect friendship that she offered me, and I fear just as much as she did what time will do to memory. The only solace I can find is in how she is now more comfortable, and that in hopefully some way, somehow the first lines in Grease, her favorite movie, resonate with her story.
Sandy: I'm going back to Australia. I might never see you again. Danny: Don't... don't talk that way, Sandy. Sandy: But it's true! I've just had the best summer of my life, and now I have to go away. It isn't fair. [Danny starts kissing her] Sandy: Danny, don't spoil it! Danny: It's not spoiling it, Sandy, it's only making it better. Sandy: Danny... is this the end? Danny: Of course not. It's only the beginning.