The Pratt's Guide to Heart Warrior Parenting

With stricter abortion laws rolling out almost daily and an overwhelming amount of misinformation about the so called “Born Alive” bills making an appearance, I wanted to take a moment to address the complexities of the situations that lead to these decisions and hopefully provide a voice to those families faced with the worst dilemmas they are likely to endure.  First, let me say that I am personally a follower of Jesus and would like to believe that I would carry a terminally ill child to term despite the massive amounts of physical, emotional, and psychological trauma that decision would necessarily create both for me and for my family, but no one can truly say what they can endure until they are faced with the reality of such a painful situation. If you have never been so unfortunate to find yourself in this tragic place, I beg you to try to empathize and also be thankful that by the mercy of God, you have been spared.  There is a significant amount of misrepresentation ...

9/11 was on the minds of most Americans this weekend. Never forget , people say. While everyone waved their flags and my Facebook feed was filled with old photos of the Twin Towers, I was thinking how much I don't really care about something that didn't really happen to me 20 years ago. Not very patriotic, I know. When I think of September 11th, I'm really thinking about what I will have to commemorate on the 12th and the 13th- what every parent fears- reliving the last hours of my son's life. No, instead of recounting where I was when the towers fell, I'm trying to remind myself of that final Saturday where everything was so wonderful we didn't even stop to take a picture. Everyone was having a great day- a lovely morning walk, a mother/son car ride to drop off gear at a friend's house and pick up some groceries. Good naps and persimmon adventures with dad. If we had been told our world would be turned upside down later that evening, I don't think we co...

Note to the reader: This post includes a lot of science fiction themes and may be unsuitable for linear thinkers.  Just kidding- you should read it anyway.  😜  It is hard to believe, but as August sets in, we are only weeks away from the 1 yr anniversary of Liam's death. There are days when I hold my breath as I open Facebook because I know I will be invited to relive the weeks and days leading up to that wretched weekend. And like any parent who wishes things had gone differently, I begin to pick apart those days and moments, wondering if perhaps I could have done something that would have altered the course of his future. The answer is neither yes nor no- the alternative endings live only in a foggy space in my mind.  As a great lover of literature, specifically Science Fiction (Sci-Fi), I have been processing my grief through that lens recently. This confession may turn me into a nerdy caricature of myself in the eyes of my readers, but I don't mind. Regardless i...

Before Christ (B.C.) and After Death (A.D.). Your first living memory. Your last tragedy. Our lives are all marked by a series of Year Zero events. It’s the point in which life as we knew it is obliterated and a new world order takes its place in our minds. The clock does not turn back and “the time before” falls away behind a shimmering, impenetrable veil of what may never be again.  Liam’s death marks a Year Zero in our lives. In my mind, I will now and forever mark an event as happening before or after we lost our son. Some of the readers here also mark time from this point, mostly family and close friends.  For my 1 yr old, Josie, this period of time will fade naturally behind the veil of baby memories and her only touchstone with her brother will be in photos and videos. How grateful I am that we have those methods of sharing the love her brother had for her. I am constantly impressed by Eliza’s memory, but as a 4 yr old, her memories of Liam will likely fade as well. I...

     In the US, when someone we love dies, there are a myriad of ways we convey the death of a person to those around us: They “passed on.” They are “no longer with us.” They are “in a better place.” It’s all very sterile and removed from the reality of death. The way we speak about death points to the way we expect the family and friends of the deceased to act. We should be sad, but not too sad. After all, the person we loved is “in a better place.” We should feel sorrow for a certain amount of time, but then we should “move on.” To someone who has experienced the death of someone very close to them, all of these cultural norms feel insane, but surrounded by a homogeny of expectations we start to feel that maybe we’re the ones who are a little bit crazy.             But we’re not crazy. Our Western traditions are not random- we’ve been indoctrinated into a culture based on a massive misinterpretation of Christia...

A lot of money and energy is spent on and around Mother's Day to promote the celebration of mothers. When many think about Mother's Day, images of breakfast in bed and presents surrounding a grateful and gracious matriarch come to mind.  It's the one day universally recognized as the day moms don't have to cook, clean, or pick up after their children. What a gift.  Under the cloyingly sweet surface is a myriad of complex emotions that most of us feel, but don't feel comfortable outwardly expressing. After all, Mother's Day is supposed to be happy, like Christmas. The truth is that Mother's Day is layered. For everyone observing the holiday, it could be that the relationship to their mother is estranged or difficult. Perhaps they are remembering a mother who died many years ago- or just last year. Melancholy can be the overarching emotion on such a day. There are women who want to be mothers, but only have losses or piles of negative pregnancy tests to show f...

For a while now, I've been working through how I feel about my faith. At first, I wondered if I was experiencing what many people call, "a crisis of faith," but that didn't feel quite right. And then I read a beautiful book about grief and I realized my crisis wasn't about my faith but about my culture. The truth is, most people are so ignorant of grief that all they can do is stand impatiently patting their pants leg and then say something completely unhelpful like,  "Everything happens for a REASON,"  or, "God has a PLAN,"  or my personal least favorite, "HIS WAYS are higher than our ways." What do any of these popular phrases even mean when submitted to or around people experiencing deep grief? Sure, you believe God has a plan for you and your family . But when we sit down and bear this out logically, what does that mean for our child? Did God not have a plan for Liam and that's why he died? Did he get bored and decide on a sh...

I want to start this by first ensuring readers understand I have not served in the military although I know several friends and family members who have. After seeking advice from my brother, who served in Afghanistan, I feel comfortable sharing the following thoughts. There are few people who understand what it’s like to be parents to a chronically ill child. We call kids like Liam “heart warriors,” because living each day well is a hard-won victory. Being a parent to a child like Liam requires extensive training, sacrifice, and 24/7 vigilance. The last 32 months have been spent with our "heads on a swivel." I was speaking to my oldest younger brother recently and we were discussing analogies. Even for my siblings, it's hard for them to understand what it has been like to be parents to Liam.  Separated by over 350 miles, their view is limited to Facebook, this blog, and the few days a year we spend together at various family celebrations. We agreed heart parenting does...

It’s been 10 days since Liam died and our lives feel like an episode of “The Twilight Zone.” Real, yet surreal with a lingering gut punch feeling- especially at night when the girls are asleep and the brain just won’t turn off.  At first, the images that replayed were of the Saturday evening when things turned terrible. Turning to pack a syringe of food for the ED and turning back to see Liam in cardiac arrest. As I type this the images jump back into my mind. Now, the images and thoughts are Sunday and all the things that day which led up to our boy’s death. What if? is a game all parents play when one of their children dies. It’s a game no one wins and yet is played countless times everyday. Ambien helps when, even exhausted, my mind goes into overdrive wondering what could have been if only we’d done this or that.. . All that thinking does not reverse the clock- instead, I’m stuck in this endless loop. During the day, there are our girls to take care of. Eliza is 4 & 1/2-...

Note to the Reader: This was written right after Liam's discharge following the Fontan in July in its entirety, prior to the events that precipitated Liam's death. Liam died on September 13th following an unexpected cardiac arrest caused by an arrhythmia on September 12th.  As I saw Logan pull into the driveway with Liam from my bonus room office this afternoon I was surprised to feel what seemed to be 100 pounds fall off my chest. I don’t think I had realized what kind of burden I was carrying. While we don’t know what still lies ahead, all the certain challenges are done. The unknown is still scary, but now I have the capacity to hope the hardest things are behind us for a while. When you live a life in fear for two years knowing earth shattering events are just around the corner, there’s a certain kind of relief with having it done.  If you remember what it felt like to break a vase or some other family relic and then realize your parents were going to be furious with you...

If you had told me in early June that by mid July, Liam would be headed for his Fontan procedure I would have shook my head in disbelief. Of course, if you had told me this time last year that in 2020 we would all be wearing masks and social distancing because of a virus raging around the world without a cure, I would have mistaken you for one of those guys on a street corner holding a sign saying, “the end is nigh.” This year continues to cement in our hearts the knowledge the plans we make cannot withstand the forces of time and chance. It is a lesson we all learn, forget, and learn again with each unexpected turn our lives take. The Fontan procedure is the final stage of a 3 part palliative surgical approach to Hypoplastic Left Heart Syndrome. In it, surgeons will disconnect the inferior vena cava (ivc) from the heart and connect it to the right pulmonary artery (rPA). In Liam’s case, they will likely add a fenestration (a connection that links the heart to the IVC). I have provi...

Like many parents and family of immune-compromised loved ones the first thing that popped into my mind when I started hearing about COVID-19 was, “this is how we’re going to lose Liam.” Maybe that seems dramatic for the everyday person who is young and/or unfamiliar with chronic illness, but to heart parents even the Flu is deadly, so something like Coronavirus is terrifying. We do all the smart things: wear masks in public, wash our hands excessively, limit our trips to the store to 1x per week, etc..., but Logan works in healthcare, so there is a certain amount of risk that we take on at baseline. We can only hope a viable vaccine or treatment can come online faster than the spread, but even as public places reopen, we’ll continue to practice social distancing until a treatment is found because this pandemic is far from contained. We are incredibly fortunate as a family to still have our jobs- our work is essential and I already work from home. It goes without saying many of our f...

So, just to be clear, we do not have Maternity Leave in the United States. I know that seems weird, but it’s only because we often mistake Short Term Disability (STD) and Family/Medical Leave Act (FMLA) as Maternity Leave. This could not be further from reality. Here is what actually happens: Working mothers buy STD insurance and are reimbursed between 60-70% of their normal pay for 6 or 8 weeks depending on the type of delivery (vaginal or cesarean). Meanwhile, FMLA guarantees a parent can be on the unpaid  leave for up to 12 weeks. To add insult to injury, most companies count the first 6/8 weeks of STD as part of FMLA which leaves parents with only 6/4 more weeks until their job is no longer protected and they must return to work. There exists no federal regulation that ensures FMLA is counted separately and so most companies combine them. For some readers, this may seem like a sweet deal regardless- after all, isn’t 6 weeks off kind of amazing? I mean, sure, if I was going ...

I’ve flipped back and forth on whether or not to invite the world into our newest news- not because we don’t want to share, but because the implications are far reaching for Liam though we (and most of the medical community) know so little about it.  For those of you who’ve seen Liam in person, he has some distinctive features: arched brows, incredible hair, and elongated eyelids. These are classic identifiers of Kabuki Syndrome which is incredibly rare and is a multi-system genetic disorder. We have known from the start about many of these systemic anomalies, but with this diagnosis we finally have the missing thread that binds them all together.  It’s such a rare disorder that our last specialist (at Duke) with years of experience said, “I don’t have any experience with Kabuki.” As you can imagine, that was not very reassuring. The funny thing is, most medical professionals we’ve spoken to say something nearly identical and we’ve been forced to send scientific papers and ...

There is so little control we have in this world. For most people it takes an earth-shattering life event to remind them every now and again that isn't true.  Everyone seems to be walking around on this planet thinking they have more control than they actually do. Then, suddenly, a friend or family member gets hurt or dies unexpectedly. You lose your job to a layoff. Someone you care about gets cancer or loses a pregnancy. It doesn't happen often, but when it does, it kicks you in your keister and you spend a long time thinking about how it could have been prevented or what you could have done to stop the tragic event. It drives you bonkers and then one day your brain realizes it needs to stop doing mental Crossfit and you go back to thinking you have control and everything is fine until the cycle starts again a few months or years down the road. With Liam, it feels like this fact is in our line of sight every day. Every day that is a good day is welcomed as an unexpected surp...

Doctors are not infallible and they’ll be the first people to acknowledge that fact, but so many of us treat them like they have it all figured out and it is often at the expense of our health that we do so. Since my son was born with an incredibly rare Congenital Heart Defect, I’ve been on the frontline of this reality with a host of specialists who are all busy and difficult to schedule or get in touch with. The simple fact of the matter is, as Americans, our healthcare system exerts a certain amount of force, often compelling parents and children to wait excessively long periods of time before they can be properly diagnosed and treated. Here’s a recent example: I needed to get Liam in to see a particular specialist and we get the referral almost same day, but two weeks after the referral, we have received no call to schedule the appointment. So, I call and learn they are back logged 6 months and the nurse clinician who determines which kid sees which specialist is on PTO until nex...

After a really great anatomy scan last week for our third child, the universe felt the need to throw us a confirmed curveball. I say confirmed because we have been watching some blood panel levels since I started experiencing itching in the palms of my hands and feet at around 12 weeks. Now 7 weeks later, my slightly elevated levels have doubled even on a medication that is supposed to help. The docs call it “intrahepatic cholestasis of pregnancy” (ICP) and it’s not supposed to present until the 3rd trimester, yet here it is, putting our family back into an uncertain season of anxiety and worry.  One of the biggest risks to this pregnancy-induced liver condition is stillbirth, so after initially being surprised by the news of a third child in our future, we are now faced with the possibility of never meeting her. Logan and I find ourselves in this protracted season of being continually reminded this world is indiscriminately cruel. It sometimes feels like we’re playing against an ...