I have two new blog posts out today (three if you count this one, but it’s kind of like a highlights reel).
New content. Happy reading, and thanks for stopping by!
Thursday, February 20, 2014:
4:30 am: Woke up from a dream that began with me taking graduate classes in a Safeway store on Easter, getting into my car to drive home, and having no breaks, despite pulling the emergency brake backward.
4:32 am: Fell back asleep.
6:20 am: Silently cursed my cell phone/alarm clock as I stabbed the snooze button
6:29 am: When the second alarm goes off, whine to Sunny Morning Jim who is already showered and dressed that I hate mornings . . . after 22 years, he kind of knows this.
6:35: Scramble to my computer, boot it up, go to the Keurig God to beg for coffee, add cream. Make a bowl of cereal.
6:45: read email
6:50: review calendar – gasp because I forgot I have to go onsite for a 9am meeting and my head is one big cowlick.
6:55: prepare to login to first International Conference Call
6:59: Join conference call on mute, watch slides, take notes, crunch loudly – double check the mute button. Multitask, finishing email reading and responding to urgent-ish messages.
7:25: Gasp with relief when con call ends early! I can brush my hair!!!
7:30: get waylaid by 9 y/o daughter who needs her hair tamed.
7:35: Wet brush my bushy hair into a submissive, yet sleek ponytail.
7:40: Get dressed in clean clothes and apply makeup as part of the endless cycle of adult acne two months shy of my fortieth birthday – silently curse adult acne.
7:50: Back to work, prepare for next conference call.
8:00: Second international conference call, get disconnected twice (not normal), take notes, let poor man in India go – it’s 10pm there when we’re done.
8:20 spent 15 minutes cursing while looking for my access badge before driving to work.
8:40: arrive at work and smile that I live 5 minutes from the office.
8:45: boot up my computer and debate if I have enough time to get coffee . . . I do not.
9:00: have productive face-to-face meeting
10:00: Choose which of three conference calls I will join. Call runs over, but is productive.
10:55: Realize the coffee counter closes in five minutes and I’m SOL, go to cafeteria and get cheeseburger and tater-tots instead. . . mmmmm tots!
11:25: Run into old friend heading back to desk. Talk and walk. Check email, write email, deflect email.
12:00 more conference calls
12:30: more email authorship
1:00: Remember thing from 8:00 am meeting I was supposed to do and take care of it
2:00: pm unplanned conference call to finish taking care of the thing from 8:00 am.
3:00 picked up kids and husband from school (+1 unplanned play date)
3:15 Log back into computer at home, work on project management stuff, field Instant Message, and return email until 5:15
5:15 Watch Full House parody on YouTube posted to facebook by brother-in-law and note the extraordinary amount of saxophone in late 80s television, because it’s important.
5:30: play hide&seek w/ 9&10 year olds
6:00: eat yummy ham and homemade mashed potato dinner prepared by delicious husband
6:25: Drive home son’s play date whose aunt is at the hospital having a baby, require directions from 10 year old.
6:30-35: Get lost in my own neighborhood on way back from little boys’ house
7:00: participate in scolding ten-year old for hiding unfinished homework assignments, email 10 y/o 5th grade teacher to request meet up and a form I need to enroll soon-to-be 11 y/o in middle school, participate in much parental eye rolling, send 10 y/o to shower.
7:30: Run around the yard like a crazy person with the GoldenDoodle, start hacking because it’s freaking cold outside. Abandon crazier dog outside until I trick him inside by pretending a scented candle is a snack jar, and laugh that golden doodle needs hair cut and can’t tell the difference between candle and milk-bones. Dog reminds me that it took me 15 minutes to find my access badge hiding in plain sight and how many times I used the F-word 11 hours ago looking for not-lost lost badge when no one else was home. Humbled by dog.
8:00: Reiterate to 10 y/o why hiding unfinished work and bad grades is not a good idea while snoopy/gloaty 9 y/o is in the shower.
8:30: Read chapter of library book to children on couch, because it’s important.
8:55: Get kids to bed with hugs and kisses
9:00: post random comments about the autonomy of women and the equity of work-life-balance and the perfection of ham-cooking-husband on Elizabeth Gilbert’s Facebook page – FACE!
9:20: Decide to write this post
9:30: Finish my wine, get a glass of water
9:40: Pull out the laptop and write this post
9:53: Finish, post, head for shower . . . I have another international conference call at 7:00 am and my kids participate in Battle of the Books at 8:00 am tomorrow.
I hope to work on my book some more over the weekend.
This is how my day usually goes.
Today my friend Jan died. She was forty-six years old and celebrated a birthday just a couple of weeks ago. Now, she’s gone. Even before I had a child with severe CHD, I thought death was pervasive in my life, from my dad and friend Mary, to coworkers and former classmates. I felt I knew more than my quota of loss.
Since becoming a heart mom it’s different. There was a time when every death shook me and reminded me that this family could have been our family. Then my rational brain took hold and my heart listened – that loss is personal, it is theirs, and the only thing it has to do with us is that they are our friends and we love them. It is a portrait of their pain not a reflection of our future.
I’ve made that rational transition over and over again far more often than I would like, just to cope with the imminent waves of death that rock this ship. Jan is different in the way Steve, Joanie, George, and Leslie were different. They were older and had adult lives, and now they’re gone. I leaned on them and in return offered them honesty, affection, and respect. I was a heart mom, but I treated them like grownups, because they WERE grownups, three of them were older than me and the other two were not much younger than I was at the time of their passing.
Losing a child in the CHD world is crushing because the family must move forward without their child and discover the strength to begin again. Losing an adult is different. Jan’s parents died before she did, so this is not a loss they must bear. But for all the other adults with CHD there are the people who don’t know them because of their CHD. They are touched everyday by people who love their “Janness” or their “Georgeness,”
My son is getting older and more and more people love him for his laugh and fewer and fewer will know about his heart. This is how it should be, Because, those these five amazing adults lost their CHD battles between the ages of 26 and 67, they were each SO much bigger than what killed them. To all the heart moms and heart dads who knew or knew of Jan and grieve tonight, please remember your kids are her legacy too and the more they live on their own terms with their own sense of humor, the richer everyone’s life will be. Thank you, Jan, for always making that perfectly clear, and making life richer for all of us who knew you’re perfect heart.
Today is February First. If you’re reading this blog, then you most likely know that February is “Heart Month.” If you don’t know it’s Heart Month, you’re probably more concerned with Valentine’s cards for school or a gift for your sweetheart.
So, it’s Heart Month again, and I watch my Facebook feed explode with facts and statistics about Congenital Heart Defects, and I am weary. It’s not the sheer volume of people I know who are directly impacted by CHD, but the fact that I feel compelled to say something because it’s “Heart Month,” and I’m the heart mom. I know I’m not the only one, but it’s kind of what I’m known for, even more than being a writer.
I can’t complain because I picked up that coronet, and I will support my book and my work and continue my advocacy. My focus will remain on research and child health advocacy because those things require extraordinary persistence. If nothing else, I am persistent.
CHD will always be personal for me because of where we’ve been, but it’s about to get a whole lot less personal where Liam is concerned. I will always be a heart mom, and the territory of my own heart is mine to share, but boundaries are being formed in the second decade of my child’s life.
While I am trying to write a different book, literally and figuratively in my life, a landslide of CHD facts falls over me like rain. Facts I live everyday, facts that I pushed through like a bulldozer when they were new, facts that haunt me now when I look backward. So, I’m not the big CHD Awareness cheerleader that I’ve been for so long, and I’m passing my pom-poms to other heart moms because I have nothing to else to share about CHD that isn’t in my book or already written on this blog.
The world is so different now than it was eleven years ago. Then, there was no Facebook and very little detailed information on the Internet. I helped change the amount of information available. I helped make more people aware. I’ve done well, but that is old news.
And, it’s because I don’t have anything new to tell you about CHD awareness, that you don’t already know, I asked Liam what he would tell you if he wrote this blog post. His response is short and bittersweet, but thoughtful. What he has to say sums up how and why I’m circling my maternal wagons and moving on to other subject matter. Liam’s words inform on what is new with CHD in our home. This is what Liam wants you to know about CHD:
“It’s upsetting because sometimes you get a whole lot of attention and you don’t actually want it.”
So, there you go. Worry not, the irony of this statement in light of some of my most popular blog posts is not lost on me at all. Liam’s timing is sublime. With egg on my face, I defer to my child who never asked for his heart defects or my determination, yet both are his birthrights. While the CHD community struggles to be seen, my child wants to be invisible.
If you want to help spread CHD awareness this month, I applaud you and encourage you to start evangelizing to people who won’t read this blog. Those people need to know that there are two million (and growing) American’s fighting CHD and that 40,000 babies are born with it each year. People who haven’ had one of those babies in their lives yet need to know that at least 8,000 Americans die every year from CHD. The unaffected need to know, but they don’t need to hear it from me. Anyone can spread awareness. The rest of us, the Heartland, are heartily aware.
This is my CHD Awareness post, my only one. To the incredible friends who’ve supported us over these eleven years, I say, “Thank you, from the bottom of my own heart.” But when we go to the cardiologist later this month, Liam will lead the discussion, and the door will be closed.
I was going to work on an article or my book with my afternoon writing time today, but I changed my mind. Instead, while sitting in my favorite Old Town coffee shop, Cafe Ardour, I’m contemplating the cost of following one’s passion and the gamble of dreams.
When I got out of my car I saw that the environmentally friendly Green Logic store next to Cafe Ardour is going out of business. I confess, I’ve not shopped there often. Mostly because the things they sell are things I tend not to buy often – new sheets, towels, dishware, handbags, jewelry – all environmentally responsible. It’s not that I don’t need/use these things, but I tend to run my stuff into the ground before I replace it and am not often in the market for most of these things. I’m also notoriously cheap about my own clothing, but that’s a WHOLE other unwritten blog post. Let’s just say, I’m not exactly a super-consumer and I spend a lot of time at the library.
That said, I went in to Green Logic and picked up a new necklace and a t-shirt for Jim because everything that’s left when the doors close is salt in the wounds of one dream ending. This is the blessing and curse of living in Fort Collins where many local business take root, mostly in Old Town but some closer to our home. Sometimes they close, and whenever I walk past a shuttered locally owned storefront, I think, “That was someone’s dream,” and my heart breaks for the person who had to lock it up. When the local Runza closed, Moira, age nine, swore off McDonald’s for ruining her favorite (locally owned) burger joint. When Moxie Java closed, Jim and I grieved for months. We were lucky Truman’s took its place.
Aside from the tragedy of failed dreams, there is a more practical reason to support local businesses. Local businesses ALWAYS give local charities more support (both socially and financially) than big box stores. The Children’s Heart Foundation, Colorado Chapter would not exist without the support of local business owners like Desiree, Mat, Carrie, and Amy. These are real people behind local businesses that support the nonprofit work that is my passion.
I am an unwavering loyal customer to people who believe in my passions. Which brings me back to Cafe Ardour. They’ve never actually given me a donation, but they’ve given me the physical and creative space where I wrote most of my first book. When my book came out they gave me prime real estate on their wall to put my book-signing posters. They know me when I come in for my coffee. It’s a writer-friendly place.
It takes a huge investment not only of money but of hope and faith to start your own business and keep it local. It does take a little more effort and probably a little more money to forgo WalMart and shop at your locally owned neighborhood stores for things you don’t need but just want. I am not preachy. I don’t like preachy. I like accountability and self-determination. I determine that all gifts and niceties (things that aren’t toilet paper and the like) and meals eaten out will purchased from locally owned businesses or franchises (like Culver’s, Learning Express, or ACE which are locally owned).
You will decide if you agree with me or not, but if you do, maybe just start with gifts? We have locally owned toy stores, book stores, and stores of all sorts. And maybe join me some late afternoon while I’m writing at Cafe Ardour or some Friday morning when I’m having coffee at Truman’s, and have a great cup of coffee that tastes all the richer because it’s helping someone in our community build a dream that makes our whole community a better place to live.
The first thing I wrote after learning, on December 30, 2002, that my unborn baby faced a high likelihood of death at birth was an email to work, explaining why I wasn’t coming in the next day. Over the coming months I wrote several emails to family and friends, some of them from a room in the Ronald McDonald House behind Children’s Hospital Los Angeles, some of them from the parent’s room at Denver Children’s Hospital, but all of them from that sweet-spot between hope and despair, where one is capable of forming coherent thought without melting into a pool of pain.
When my child was 19 months old I found CarePages.coom while at the hospital for the fifth of what would become twelve different heart surgeries of assorted risk and recovery. The CarePage was a Godsend that allowed me to communicate to everyone who wanted to know what was happening without the pressure or fear of leaving someone off the list. I could also control the access and be as raw, honest, and optimistic or pessimistic as I felt. It sustained me through surgery number 12.
An odd thing happened along the way, a coworker (I don’t know for sure which one but I have my suspicions) complained to my manager that my solicitations for research funding was making him/her uncomfortable. I was taken aback because I know my company’s policies, and I never once asked for donations using any company resources or on company property or company time. I defended myself accordingly as this person would have seen my request only on my personal blog that required an account creation and active log-in to view. This was my first taste of criticism or judgement levied against how I communicated our family’s healthcare and emotional experiences. I’m sure there were others critiques. It is simple human nature to judge others, even when we aspire to be better than that.
It’s been eleven years and several days since I sent that first email. Now I’ve written hundreds of blog posts, not just here but as a guest blogger in various venues. I wrote an article for the American Academy of Pediatrics. I spoke in front of 10,000 people and participated in several media appearances. Television cameras have been in my house to film our family, and I had the surreal experience of being interviewed by the radio reporter who I was listening to on September 11, 2001. I’ve spoken at symposiums and panels from Los Angeles to Atlanta, and then there’s that book I wrote. One of my blog posts had over 15,000 hits in less than 24 hours once, but I don’t want to talk about that because it was controversial and controversy makes me queasy. When confronted with hard questions, most of us get queasy. Suffice it to say, I’ve been heard.
Along the way I was sustained not by what I wrote publicly but by what I read and wrote privately, to mother after mother after mother expecting a child like mine or seeing one through yet another (thousands now from my social network) of heart surgeries, or seeing their children to the end of life (fewer but far too many of those in my social network). It was in those private chat rooms and emails that I found my calling to share beyond the locked-up blog. I shared because those mothers needed me to, because when we all went to Barnes & Noble for first decade of my son’s life, there were no books for us, by us. There weren’t even books about us by others. We were silent and invisible and our children were reduced to anatomical anomalies and relegated to $800 text books and libraries to which we were not admitted.
These mothers’ and fathers’ need was my need and my mandate. I spoke and wrote to validate our broken hearts because when a child is born with a broken heart his mother’s heart breaks too. It just does. Then there were the grandparents, siblings, cousins, best friends, and assorted supporters not just in my life, but in the lives of my heart-mom friends. They appreciated what I was sharing and were gracious enough to let me speak for many of them. My willingness to share in a public way helped us unite, brought awareness to a prolific but invisible disease, and raised funds to save lives through medical research. It was a beautiful thing; until it wasn’t.
This past week a married couple of professional journalists did something really tactless, maybe even vulgar. They questioned the taste and validity of a cancer survivor’s blog and tweets about her struggles. This woman Lisa Bonchek Adams happens to be someone whose blog I’ve followed for about a year. She is a graceful writer and a fierce advocate for herself and others. Here are the articles and some of the fall out for your perusal:
I’m not going to comment on the Keller articles. I’ll just let them put their own feet in their mouths and leave it to the fall out boys and girls to take them to task. I can’t either Keller seriously as a social critic because they clearly don’t understand how the Internet and social media has allowed millions of patients and caregivers to break free of choking isolation. This is something I’ve not only lived for eleven years but studied in graduate school. Healing and re-framing through narrative and medical blogging belongs to an academic body of knowledge and has received extensive quantitative scientific analysis. The Kellers seem woefully uninformed about this topic yet felt themselves competent to critique its implementation. They missed the point.
The finer point, which they both trampled over in their haste to champion their clumsy opinions, is, “Why do we share what we share, and what are the unintended consequences of our pursuit of the truth or other noble or less noble motivations?” This is a valid question that doesn’t necessarily invalidate the sharing itself. I give Lisa a full and free pass on whatever she writes because she is writing about her body, her illness, her fight. It’s all hers and I defend her fully on her right to say whatever the hell she wants about it on social media accounts that belong to her, and to which people must actively visit and subscribe . . . unlike say two of the biggest newspapers in the world that an enormous amount of the global population will read in passing. Lisa Bonchek Adams need answer only to herself.
The finer point has also led me to examine the unintended consequences of my own writing. I’ve been aware of these unintended consequences for some time, but I had my come-to-Jesus moment about them this week in light of the more subtle question never deftly stated in all the chaos. What were the unintended consequences, and do they outweigh the motivation and the intended result?
Exhibit A: This Twitter post by the Executive Director of Association of Public Health Laboratories referencing my comment on a panel in front of a ballroom full of PhDs at an international convention in Atlanta:
Scott Becker @scottjbecker 7 May
“I have come to accept that I will likely outlive my child” @amandaroseadams at #nbsgts13 [TY for sharing your story]
(As an aside, Scott Becker is a lovely and wonderful person and had every right in his professional capacity to tweet this from a public forum where I was an invited speaker. I had no expectation of privacy, but weeks later I was stunned to read my own quote and see how powerful my words were looking back at me, even or especially because they tell my truth).
Exhibit B: My son (then 9) sitting on my chair in my home office reading the first chapter of my book and asking me if his hospital roommate described in that narrative died (he did). Then I had to explain that he needs to wait until he’s older to read the book that is about him. We live in a paradox where this child not being old enough to read about his own infancy.
I have many other exhibits as, for good or for bad, I’ve been an exhibitionist. I have been such a fierce and feisty champion of the truth that, for too long, I was entirely blind to unintended consequences. Since KellerGate I deleted the most vulnerable photos of my son from the Internet, not because I’m ashamed of his pictures, but because they are his pictures. When we took those pictures, we feared (and with good reason) that they would be his last. That was then, now this is just a fraction of his significant and much different life. He starts middle school this fall, but I have already established a huge online footprint for him when his peers are just beginning to define their own.
So, this moment has become a crisis of faith and a crucible of contrition. KJ Dell’Antonia is also with the NY Times online, and and she wrote this post today. We’ve been discussing this issue for a few days and her take on it expresses, from a slightly different but still relevant angle, how I feel about the unintended, if not yet fully manifested, consequences of telling my child’s story for him. Which brings me to this can of worms, or maybe a better analogy is the empty bottle. The genie left long ago, and I can’t get it back in the bottle.
I can clean up, delete, and lock down things that I’ve written and reduce his online footprint a little. I can start fresh and stop writing about my son entirely, now that he’s older and will be trying to make all new friends in the fall. Or, I can set a rubric that I will not say anything about him I would not say in front of him, not just when he’s 21, but when he’s almost eleven.
This brings me full circle back to why I ever wrote anything in the first place . . . those private messages from all the moms who you will never hear, who are stressed out, terrified, and silently fearing the worst. The worst will find some of them whether I tell you or not. I have also received messages from grown ups who were once just like my son – miracle babies who weren’t supposed to get as far as they’ve gone, and many of them appreciate this perspective. Some adult readers born like my son have told me my book helped them feel closer and more empathetic to their own parents.
A boy, a high school senior, who bunked with my son at heart camp read my book three times because it gave him some insights into his own story. When I think of that, I feel so conflicted. Did I help one boy at the expense of my boy. Or am I presuming some imagined harm or discomfort on behalf of my son that he may never feel. He is, in fact, a very open advocate for his condition and not at all embarrassed or shamed by it. I’m proud of his resilience, but I wonder if he’s acting on his own nature or responding to my nurturing. I’m wondering about a great many things these days.
I know my motivation and output has merit. I know there is intrinsic value in what I’ve done. Yet, gone is my self-righteousness, and an ever-growing uncertainty and ambivalence is rising with the dawn my son’s adolescence. I don’t have the answers, but I have the courage to ask the hard questions, and ask them first to myself.
Hello, all. I’ve been meaning to put this information up since I recorded the audiobook in 2012, but I finally got it done. This is useful information, and I plan to keep updating. I left the comments open for suggestions. Please share with your Heart Friends and Family!