How Far We’ve Come

I have made a commitment to limit how much of Liam’s personal information I share publicly. Because of this I’m trying to balance important and helpful information for those parents and adults who follow my blog and social media because they’ve benefited from me sharing our experiences.  At least 6 times a year, sometimes more, I get a heartfelt thank you from a stranger who felt less alone after reading about our family’s journey, and it reminds me that while privacy is important, we are also part of a collective that is often starved for information and emotional honesty on the topic of raising a child with a chronic and potentially lethal condition.

So, I’m going to tell you a couple of things about Liam’s procedure today and some funny things. Then I’m going to tell you a less funny thing. Then I’m going to tell you how it feels to be in this chair literally looking at a toilet because it’s in the middle of Liam’s room right next to the standard-issue-reclining-hospital-mom-chair from which I write.

Liam had a stent placed in his left pulmonary artery back in 2008, and it was ballooned opened larger today. There were difficulties with the stent when it was originally placed  so little tears were made to it to prevent lasting damage to the lung. However, those little tears could not be safely opened further today, though they would have preferred to it wasn’t worth the risk. Still, opening the larger part of the stent is increasing his blood flow to his lung.

More good news is that when they ballooned open his right pulmonary artery in 2008, unlike the left it stayed open and is looking good. This is huge considering he was potentially not a candidate for the Fontan ten years ago because of his hypoplastic pulmonary arteries.  Happily and surprisingly, Liam has not grown a significant number of collateral veins since his last procedure in 2008, so that was not an issue today though we expected it might be. The doctors test occluded (blocked) his fenestration (intentional surgically created hole between his heart and circulatory system) but it yielded no benefit. So it remains open, which did not surprise me at all.

Great news continued with good pressures in his heart, lungs, and liver. This is all excellent given his age and what those good pressures mean for the longevity of his current good overall health.

The new and not so great news is that Liam has developed some considerable pulmonary arteriovenous malformation (AVM) growth. Yeah, Google pulmonary arteriovenous malformation and when it only brings up scholarly articles you get to see what it’s like to have a kid with rare and potentially lethal medical problems. For now these things are like weeds they don’t want to pull because they might grow back bigger and stronger, but they (like the collaterals before them) are dumping dirty blood into the clean and causing Liam to be blue with long term low saturations. This is why the fenestration test occlusion made no difference. The AVMs are undermining his reconstructed circulatory system.

The answer to this problem is not obvious because it’s premature to assume we know the extent or long term effect, but a change of altitude may be in Liam’s very long term (not immediate) future. However, before we even seriously consider that drastic a move, we need to know if it would truly benefit Liam’s health and much more research and second opinions would be necessary. We know it’s not good, but we don’t know if it’s actionable. Currently it’s just on our radar for now.

The best news of the day was that the radiologist was able to follow the cath doctor into Liam’s body and get a liver biopsy sample from the inside out. This is great news because it means we’ve avoided a second surgery and general anesthesia tomorrow! This is a huge relief not only to us but especially to Liam. Here is where I draw the line between his privacy and my obligation to inform. Let’s just say he had a lot of anxiety. If other heart parents want to talk about this issue and my advice personally, you can contact me through my web site “contact” link or on Facebook.

I will tell you one funny Liam story though, because it’s not private and it is precious. He kept asking me how many cells the liver doctor was going to take in the biopsy, and I told him he’d have to ask the doctor. At one point he asked the anesthesiologist, but that was a radiologist question. Liam then asked if they were going to clone him! He was back in the cath lab before I saw the radiologist, so I asked him Liam’s question not knowing why the number of cells was so important, but that Liam wanted to know. The radiologist explained the size of the core sample but couldn’t give a cell count.

Well, when Liam woke up, me telling him two centimeters and a little narrower than your IV tube was insufficient.  He wanted to know the exact number of cells so he knew how many clones they could make from him and if it was enough for a clone army (he was very sedated), but the question came up yesterday when he was perfectly alert. So, who knows what kids are thinking? I know Liam’s imagination is fully intact as was his strong spirit, and I’m so proud of him.

The less funny part of today was when I was all alone for two hours waiting for Jim, Jenny, and Moira. I’ve been alone with Jim during Liam’s many surgeries, but never all alone. This is no one’s fault. We didn’t know when his procedure would start and were expecting it to be at 1:00 pm, but it actually started before 11:00 am. So, I was by myself in the waiting room, and all around me were clusters of supportive families. I was OK until the clusters of families started taking the chairs near me, one by one, and dragging them to their little clusters, so that I was left on my seat with one chair next to me. I put my wallet on it because if someone took that one chair I wasn’t going to be OK. I knew my people were coming.

The thing was though, I wasn’t alone. All around me were versions of me. 29 year old postpartum me waiting for Liam during his first surgery. 30 year old postpartum me who left her baby girl at home to bring Liam to another cath. There was the me whose 32nd birthday arrived eleven days after nearly losing Liam for a third time, that me waited long into the night not knowing what was happening to her son who was not yet three. Then there was me circa 2008, age 34, watching Liam bleed out, watching a tiny nurse in scrubs throw her body and a sandbag down to stop the blood at his cath entry site. That same me took Liam to kindergarten just days later.

All of these younger incarnations were with me today as I sat criss-cross-applesauce on a bench watching a strange game of musical chairs where one by one they were taken away leaving just me and the ghosts of myself, and I cried. I cried without a big glass of sangria. I cried without the privacy of a loud shower. I cried in public in front of large groups of people, and I am proud of the me I was and the me I am, because I am so strong. One of the strongest things I’ve ever done is let my forty-year-old-self cry like a baby and not give one shit what people thought of me.

I know that this is not the end of our journey. I know that this good news will keep a long time and taste like sweet honey, but I also know that it will also not last forever. Today I saw amazing things including huge leaps in technology and treatment since we were last here in 2008. I’ve glimpsed the future of the fight against CHD, and it’s promising and hopeful. I also felt like I really was part of making that happen through my advocacy and charitable work, which makes me feel good, but not half as good as I feel about how far I have come personally.

Today, when I was strong enough to sit alone and cry without shame, I put the past to rest in a way I’ve been unable to do for twelve years. Those two hours alone were like an exorcism where sitting in my silence during my child’s 13th surgery released twelve other versions of me and let them see that we are all going to be OK.

Posted in CHD, conge, congeni | Tagged , | 6 Comments

New Article on Brain, Child’s Blog

My first “contributing blogger” post is up on Brain, Child’s blog this morning. Please read and share. It’s a great magazine, and after you read my piece you can get lost for hours in all the other amazing essays there.

Posted in brainchild, brainmother, self image, self worth | Tagged , , , , | Leave a comment

States of Permanence, States of Grace

Denver Skyline from I-25 and Speer Blvd. Taken by Matt Wright on March 26, 2006.

Denver Skyline from I-25 and Speer Blvd. Taken by Matt Wright on March 26, 2006.

The Denver skyline shot up during early 1980s, and, my dad helped build it. Dad, a welder, came to Colorado in 1979 for the construction boom. However, for much of his seventeen and half years in Colorado he was a long distance truck driver hauling beer over the Rockies to California and bringing back fruit and cereal.

Eighteen years ago this Friday, my dad died. He was forty-eight years old. Soon, I will be forty-one. Dad died in Oklahoma, is buried in South Dakota, the state where he was born and raised, but I’ve remained in Colorado where he raised his four children.

While he was still welding, during his mid thirties, Dad was severely injured in a construction accident. He nearly lost his foot, and lost use of it for two years. It never fully healed, and he never returned to welding. I can’t imagine how horrible it was for him to be trapped in a small home with his four young children and wife, unable to provide more money than his workman’s compensation checks. It must have been devastating to be in so much pain when he was used to being so productive. His career had been building metal structures, but for prolonged periods he was confined to bed or his reclining chair as he healed.

Of course, we didn’t understand the complexity of adults’ feelings in the 1980s. We were young children, unable to appreciate the gift of our father’s presence. When he was home all the time, we couldn’t have guessed how little time we had left. We were children with young parents and had all the time in the world.

People thought Dad was funny and people enjoyed his company. He was generous and kind, and strangers never saw his angry side. His children did because children always feel their parents’ fear, disappointment, anger, and frustration, no matter how they try to hide it with jokes or laughter. We all felt it, but we didn’t understand it. Now, in my forties, I’m starting to understand.

During my early childhood I constantly worried about money. The construction industry was full of booms and busts, and Dad had a couple of truck crashes before his most devastating accident. Later when he could work again, I worried less about money, but I came to accept that there would never be extra. What I worried about most from age twelve to eighteen was that my dad would die in another truck accident. Every night I prayed for his safe return. Then I left and forgot I ever had parents because I was practicing being  an adult.

Now it is my own children who feel my secondhand fears, frustrations, and disappointments. I try to put on a brave face, but grownup life is scary in ways childhood never was. It seems adulthood is full of fears about what has happened as much as what may happen.  Though as a mother I try to shield my children from the ugliness of the world, I fear the strongest vibrations of my negative emotions still reach through me and touch them. As children grow their lives become too big for parents to eclipse the darker parts of the world, and in our smallness and futility, our own fears grow in proportion to our kids.

As Fate would have it, and She always has it her way, my son’s cardiology appointment is on Friday, the anniversary of my dad’s death. I expect difficult news that day. We know another heart surgery is unavoidable, even expected, sometime in the next 18 months if not sooner. So the topic will be raised. Even if delayed, this thing I fear will come to pass sooner rather than never.

A week and a half ago, my son was in the ER. He fell and his teeth pierced his mouth. He’s OK, but I spent this past week in the shadow between unplanned and planned hospital visits. My fear is palpable, it’s the resurgence of something that’s plagued me since before he was born, this fear of losing my child. It’s a rational fear that began more than twelve years ago and has never left me.

My children must have felt and still feel my fear vibrating off of me, even if they can’t understand it, even though I wish I could hide it better. Knowing they can read me, though it’s just the tune and not the lyrics, makes me feel a new compassion for my father and mother that, of course, they deserved all along, but that I could not understand until I stood in their shoes trying to keep my fear in check and save face in front of my children.

Like the child who feared losing my father, I am now a mother fearing the loss of my son. My dad did die, but not as I expected. My larger-than-life dad didn’t die at a construction site or in a truck accident. Rather, he died, diminished by cancer in a hospital in Tulsa, Oklahoma with my mother by his side. After eighteen years, I’ve missed having a father in adulthood and getting to know the person who raised me as more than just as a dad. Now as I’m closer to the age he was when he died, I can’t imagine my dad turning 67 this year, retired but alive.  That person never existed, will never exist. That’s the harshest thing about death, the dead are trapped in memory, and we lose them again and again with each passing year that we change and they do not.

On Friday morning, as I approach the Denver skyline on my way to the Colorado Children’s Hospital with my son in the backseat, I will be glad I wrote this because I’m the bridge between the lives of my father and my children who never met their grandfather. I know my dad worked on more than one of those skyscrapers in the photo at the top of the post. Though his body is buried many states away, the Denver skyline is a sort of monument to my father’s existence that I can see on the horizon to  remember a man I lost when I was twenty-two, but who left enough of himself in my heart that I understand him a little better with each passing year.

Posted in local - Colorado, memoir, motherhood, Real Life | Tagged , , , | 3 Comments

Read and Release Book Review: Coming Clean, A Memoir

The first book I read on my new Kindle Paperwhite was Coming Clean, A Memoir by Kimberly Rae Miller. I’m going to jump right into the review categories.

Technical Execution and Style: Positives were the clear and direct language. I didn’t stumble on any of the language and never had to reread even one sentence that was unclear. For a memoirist getting out memories, such clean/clear language all the way through is a sign of good editing and attention to detail. That shows respect for the reader and the story. The only negative I have is that even though I never had to reread a sentence for clarity, I never wanted to reread a sentence to savor the language or deeper meaning. The book was not that nuanced/artful. There were a few loose ends about pets and friends that I would have like to see closed or left out but nothing jarring. So, I give this book a 7 for execution because the writing was solid but not beautiful and there was more telling than showing.

Voice (Authenticity): Ms. Miller has a great narrative voice. Her humor and kindness come through in her writing, as does her vulnerability. I would give this a ten for voice but there are some points where it feels like she’s holding back and not trusting the reader with the full story, or she hasn’t reached deeper meanings to her narrative yet. However, altogether she has a great voice and I give it a 8.

Story (Plot/Characters/Pacing): This book scores points for originality in revealing what it’s like to live with hoarders and the psychological impact both for child and allusions to what the parents suffered to become victims of their own excess. I felt that the book could have been a few pages shorter because there was some repetitious explication of conflicts. I realize that this is because there was a pattern of conflict, but the episodes don’t vary enough to justify so much space, and I found myself skimming. If I’m skimming, the story has lost me until I start reading again. The ending could have been stronger with more insights about how the author was impacted and continues to be impacted. Again, this is a telling versus showing issue. She hits the ball but not out of the park. If the book wasn’t so unique (I’ve never read one on this topic before) I would give it a 6, but it was different so I’m giving it a for story.

The highest possible score I could give a book is 30 points, this book gets 22 points from me which means I would recommend buying it, but then sharing it with friends. Don’t horde this book.

  • I want my time back, 0-6 points = 1 Amazon star
  • Approach with caution, 7-13 points = 2 Amazon stars
  • Use the library,  14-19 = 3 stars Amazon stars
  • Buy but share with friends, 20-25: 4 Amazon stars
  • Worth your shelf space: 25-30: 5 Amazon stars

For more on the criteria I use to review books see the introduction post. The next book I will be reviewing will be from my private collection and a candidate for give-away, so make sure to come back and read the review.

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Read and Release Book Reviews: An Introduction

One of my goals for 2015 is to get rid of things I don’t want/need. Another goal is to start a new series on my blog for book reviews. As luck would have it Jim (husband of 20+ years) bought me a Paperwhite Kindle for Christmas and I promptly read four books in less than 36 hours. We won’t talk about how much sleep happened over those 36 hours.

Sufficed to say I’ve always been a keen reader, and now I have a happy little gizmo friend to make reading even easier without adding to the clutter of our living space. It’s a win-win. However, some of the books I will be reading in 2015 are on the shelves in my basement, and many of those will be given away to readers who comment on my reviews (US only since I’m paying shipping on give-aways). Should I get any Advanced Reader Copies (ARCs) or books sent to me for review, I will give those away too. If you want to send me a book to review Contact Me Here.

This first blog post is an introduction, not a review. The following explains my ratings system for a book and what it translates to in Amazon stars. I will also be pasting these reviews into my Amazon account and may occasionally republish an existing Amazon review here, especially if another reader has marked it as helpful. My reviews are almost entirely subjective, but I’ve read thousands of books and written five (though only one was published) and also this is my blog so my rules. So my personal ratings system, each category will score between zero and ten points:

Technical Execution and Style: Writing style matters to me in how the author executes a story and includes things like continuity, connectedness, metaphor, language and use of narrative threads. If an author surprises me in a good way that will up the style points. If I’m disappointed because the storytelling falters or the writing is too fussy or distracting to stay engaged the points will be lower. Also a huge no-no for me is when the facts change in a book because the reader should be rewarded for attention to detail, not have her suspension of disbelieve collapse in inconsistencies (and I’m not talking about a craftily unreliable narrator, but little things like timelines that don’t make rational sense in an otherwise rational story).

Voice (Authenticity): For me the difference between voice and style is technique. With careful plotting and study the artifice of style can be executed, but voice is authentic. I have read books without much flair but such and authentic voice that the book could take me in all kinds of misdirections but I still enjoyed the ride. So, a voice that rings true and consistent will rate higher than one that feels stilted or manufactured. Voice is what makes me care.

Story (Plot/Characters/Pacing): A story has a beginning, middle, and an end.  A great story is one with such great characters and plot that I don’t want it to end. Good storytelling is all about pacing and engagement and I own that it’s not my greatest strength as a writer, personally.  I’m likely to be less judgmental on story than other elements. However, the plot and the people (whether fictitious or real) will really have to WOW me for me to give a very high score, but absolutely horrible for a lowball. Story is likely to be the fulcrum of my reviews.

The highest possible score I could give a book is 30 points, the lowest is zero. This is how my ratings system translates to Amazon’s five stars:

  • I want my time back, 0-6 points = 1 Amazon star
  • Approach with caution, 7-13 points = 2 Amazon stars
  • Use the library,  14-19 = 3 stars Amazon stars
  • Buy but share with friends, 20-25: 4 Amazon stars
  • Worth your shelf space: 25-30: 5 Amazon stars*

*I won’t give away five star books unless I have duplicate copies.

The first book I’m going to review is the first book I read on my new Kindle. It’s called “Coming Clean, A Memoir,” by Kimberly Rae Miller. I can’t give it away because – Kindle, but the second book I review will be from my private collection and eligible for “read and release,” for blog readers who comment.

Posted in book review, library, read and release | Tagged | 1 Comment

A Guest Post from Liam Adams

Today, Liam is going to do a guest post about the thing he and his classmates are  doing at school.

LiamonhisownHi, my name is Liam. I am eleven years old and in sixth grade.

My school is trying to buy a tuba, some chimes, a cello, a bass, and other instruments for our music program for kids who can’t afford to buy or rent their instruments.

Music is one of my favorite subjects and I’m learning how to play the violin this year. If you want to help you can donate here.  I have five Kinard stickers to give out to the first five people to donate $10. So if you donate, please put my name in the box and comment below that you donated so I can mail you a sticker and a thank you card. If you want to donate with a check, comment below and my mom will email you.


Liam – that link again.


Posted in Heartland, Liam, local - Colorado, Real Life | Tagged | 1 Comment

My friend’s new blog

Check it out! 

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