Friday, May 25, 2012

Anticipatory Grief

Yesterday, a relative of Dusk's forwarded me a link to an article in his local newspaper, about parents who had started a nonprofit foundation in memory of their daughter Lauren, who had passed away from a Congenital Heart Defect. He sent it to me, saying that although the article was tough to read, the family was trying to make some good out of something terrible and had started a foundation and it made him think of me. It meant a lot to me that he thought to send me the article.

I linked to the article and started reading. It took me just a few minutes to realize that this sweet little 3-year old girl had Hypoplastic Right Heart Syndrome (the opposite of Bodie - she only had the left side of her heart - different first surgery, same second and third surgeries, better outcomes generally as you're working with the stronger side of the heart) and that she had passed following her third surgery, the Fontan...the very same surgery Bodie is gearing up for. My heart literally stopped when I read that. It's not often that kids pass after the Fontan (most of the top surgical centers have survival rates between 95 and 99%). But it does happen. Typically the kids have other complicating factors, but not always.

I found the girl's Caring Bridge site...and was met with photos of the sweetest little 3-year old girl you could imagine, smiling up at the camera just like any other carefree 3-year old. I scoured her site, looking for complicating factors, things that would make her higher risk, that would explain why she passed in a way that would mean it couldn't happen to Bodie. (Not that complications make it any easier when it's your child who passes, but only that it makes it easier for me to distance myself.) I came up empty-handed. She wasn't complicated. Her Norwood went pretty smoothly and her Glenn went smoothly. She spent the time between her Glenn and Fontan living a pretty normal life, just like Bodie. She geared up for her Fontan, the pinnacle of the surgical route hypoplasts must take, the make-or-break it surgery, where the land of milk and honey lies on the other side, the land of "no anticipated interventions for the foreseeable future." Her surgeon and surgical center were top notch. Her parents sent her into her Fontan fully expecting her to recover well from that surgery as well. They had no reason not to.

Her Fontan went off without a hitch - the surgeon came out and told the family it had been a textbook Fontan. They saw their sweet girl transported into the Cardiac ICU, with the attending nurses and docs all saying how great she looked. Moments later, everything changed. They were called into a private room, with doctors and chaplains and told that something had happened. The mom actually said that no, she thought for sure they had the wrong family, that they had just seen their daughter and everything was fine.  But it was the right family, and their sweet girl had had an arrhythmia and gone into cardiac arrest. They had to re-open her chest, do chest compressions and place her on ECMO. She came off ECMO a couple of days later, but they had to let her go shortly after that. To be honest, the site doesn't give a lot of details, but I assume it was brain damage from the time spent doing CPR.

When I read stories like this, I literally cannot breathe. My chest tightens. My world starts spinning and I get nauseous. (Anxiety attack? Yes, please.) I run to hug Bodie, to cling tightly to him, begging God to "please let me keep my son. Please don't take him from me." It is impossible to explain the sheer amount of death and sadness around me all the time, being so deep into the heart community where warriors are turned into angels suddenly, unfairly, irreplaceably fast.  But reading stories like this, of a child doing so well and then, just, inexplicably gone, as a result of a surgery that Bodie still has to have makes it so.much.worse. It is every fear of mine wrapped up in a pretty little box with a nice shiny bow. Pretty fantastic, right?

I recently read a book written by a fellow heart mom about her journey with her son born with a complex heart condition. Although much of her experience was truthfully vastly different from my own, her discussion on anticipatory grief was dead on. Anticipatory grief refers to a grief reaction that occurs before an impending loss. The thing is, with heart moms, our loss isn't impending - it's hypothetical. It might happen. But it might not. Our kids might be gone tomorrow. Or they might live to be 100. But there is all kinds of grief wrapped up in just the thought that the loss might happen, that it is much more likely to happen with a child who has a congenital heart defect than a child with a healthy heart. But then I KNOW I should feel lucky that I still have Bodie and not let my mind get wrapped up in any grief - if it comes, it'll come soon enough. So then, I get to add a fun layer of guilt into the grief. It's truly impossible to explain to someone who hasn't walked this path. But trust me, to someone who has walked this path, it makes 100% perfect sense. You see sweet heart warriors become angels all the time around you. Why wouldn't/couldn't it happen to your child, to your family? 

So why am I writing this? I'm writing this to ask for understanding. For an understanding of the sort of mindset a heart mom finds herself in. For extra prayers for our family during this time period leading up to Bodie's Fontan. I know we still have a ways to go (probably another year or so, unless Bodie has other plans), but truthfully, I know I won't fully exhale until we're post-Fontan. So, if I'm a bit neurotic (you know, more than usual), a bit more emotional, a bit more tough to handle, please understand why. I think I'm pretty good at "letting go and letting God" and trusting that ultimately, HE is in control, not me - but, as a human, as a mom, I am daunted by the thought of another open-heart surgery. I am afraid that my son won't make it through this surgery, that my grief will turn from anticipatory grief to real, true grief. That, like Lauren's mom, I'll be left only with memories of my sweet toe-haired boy who once walked among us for far too short a time. And we have so many heart friends approaching their Fontans this summer that I get to live with this constant Fontan-reminder and the accompanying anxiety attacks.  So, yeah, if you have the time to spare, send some prayers up for our family - and all of our heart warrior friends. And especially, most especially, for this sweet little guy. Because I want a lot more moments like this in our future...



  1. <3 I don't have any words. My own personal grief has knocked me to my knees tonight. But know that you are thought of and prayed for all the time.

    Love you guys.

  2. My family and I always pray for all the heart families and there childern everyday. I know how you feel and what you mean. When Emma was in the hospital for her Glen we had a few heart babies and childern we knew pass some of them in the very hospital in the PICU well Emma was in it. What I do to make it through each day is look into her eyes and hold her and watch her smile. Sending you guys big <3 hugs.
    From Elizabeth Anne Schnare and family

  3. Gah! You put into perfect words how I feel, yet have not been able to explain.


  4. The part where you wrote about Lauren's arrythmias post-op did make my heart stop. Liv is doing well but I can see shes feeling pretty down and out and I seriously even think shes a little depressed. Our kiddos are strong but I know theres no telling what tomorrow may bring.

  5. I think you stole these thoughts/fears out of my own mind. Oh, how I completely understand exactly what you're saying. There have been so many times I have scoured a blog trying to figure out exactly what took a child. I have to convince myself that that child had something else going on that Derrick doesn't have and that he'll be fine. I have the same grief/guilt thing all the time. I'm so, SO ready for this Fontan to be behind us all! :) Hugs and lots of prayers!

  6. Aptly written. I've been contemplating some of the same things. When I came across this scripture in Isaiah it did give me some hope that maybe these little ones that leave us too soon are spared from something more awful in the future, not to mention the glory of heaven that they get to experience. Isaiah 57:1-2. "Good people pass away; the godly often die before their time. But no one seems to care or wonder why. No one seems to understand that God is protecting them from the evil to come. For those who follow godly paths will rest in peace when they die."

  7. Amy this is lovely. That's it. That's all. I feel this too.

  8. I missed this update while we were on vacation and I am glad I scrolled through your blog to catch this. I CRIED!!! I totally get the whole anticipatory grief thing. Heart parents definitely experience that. It's an unnavoidable side affect of having a child with a life thereatening condition.

    My heart breaks for the family of the three year old girl. So very sad.

    Know that I pary for your family and sweet Bodie. {{{HUG}}}

  9. Thank you. From one heart mom to another, thank you for finding the right words to express so much.

  10. Love your insight. As our last weekend before our Fontan quickly approaches my fear is close to consuming me.... I do well when my kiddos are around, but it's those times that I am alone that I can't get past the overwhelming fear that I could lose my son. I like you, am praying for lots more of those snuggly moments with my own toe-headed warrior! Much love and prayers coming your way!

  11. As an adult CHDer I really can't relate to what you are going through but I can send you tons of love and hugs.

  12. I am right there with ya, sister. Being a heart mommy is hard and I have had MANY moments of anticipatory grief. I am so grateful to have Him walking this life with us and to know that He will carry me through every step of the way. Praying for your sweet Bodie and my sweet Field everyday!

  13. I am so beyond fortunate that I do not have to live day to day with these fears always creeping up in my mind. I truly cannot even imagine. I used to take care of the little ones post glenn and fontan- and man those kids are always the best little fighters (As you know too well).
    All I can say is I think of you guys often... You are SO strong Amy and Bodie is the luckiest little boy to have you as his Mommy. I enjoy reading your posts so much, you are such an eloquent writer- expressing feelings thru words that not many people can do. Thank you for sharing your journey with all of us.

  14. My daughter had several risk factors to make her high risk for the Fontan but I was assured that she was ready. She overcame the first surgery but just barely. ECMO for 23 days and ventilated for 5 months. Second surgery was a breeze. The Fontan put her into heart failure. Now we sit and wait. Wait to see if she gets better. Wait and watch her struggle every moment. It's never easy or fair. You definately have to walk the heart mom's path to understand the journey and how it shapes us.

  15. Thank you, thank you, thank you. I LOVED this post. I am praying for you sweet Bodie.

    Heart Hugs from Nevada!

    Lara H.
    Heart Mom to Mylah

    P.S. I wrote about your post on my daughter's blog. Thank you for sharing your feelings in such a wonderful way!