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Too soon to watch a HLHS documentary

All morning I was fine but then I feel a slight panic set in. I already know the signs…rapid heart beat, clammy hands, throat feeling tight. But I’m with the kids in the car and we are out to pick up lunch. If I turn the car around, they’ll ask many questions, wonder what’s up with mama, and probably get frustrated and angry with my sudden arbitrary choice to go straight home.

Ok, practice what I learned in therapy. Breathe. Breathe. Slowly inhale, exhale. Soothe self, remembering that I’m okay and God’s presence is with me all around. Tell myself that having panic-y feelings is not shameful and can happen to anyone. Look around and remember that everyone has problems and is fighting their own battles. When anxiety begins, I irrationally think that everyone’s life is fine except mine.

I think I know what triggered it. Over the weekend, we watched a documentary about HLHS called Bowen’s Heart. I’ve followed Bowen’s story since he was born and found encouragement from his blog when I was in the throes of Ellis’ surgeries and hospitalizations. (I probably mentioned Bowen’s Heart in the past; His father was in the Christian band Sanctus Real but stepped down a few years ago to focus on family). When the documentary started and I heard someone’s voice say Hypoplastic Left Heart Syndrome, I was frozen.

Overall, it was inspiring to watch one family’s story unfold and to hear the heartaches and worries of parents and siblings. The difference in his story with ours is that they waited to have the third surgery until he was 8; the recommended age is usually 3-5. I can see how his family decided to wait; it’s a tumultuous process to break up the honeymoon period, after the harrowing 1st and 2nd surgery and the lull time time before the 3rd surgery, when your child seems to be doing well and you suddenly disrupt that with a major heart surgery.

The family was transparent about their fears of death for the child and that’s something we internally struggle with; but it is rarely if any time verbally expressed. So that jarred me.

We sat there watching it, affirming how we feel similarly to them, pointing out differences and similarities, and retelling bits of our stories with each other. The part that triggered my fears was the grim statistic they shared in the end. I hoped Ellis didn’t see it. But later she whispered in my ear with tears in her eyes, asking me if she’s going to die…ack!!!!!

Ugh….”no honey,” I assured her. We have access to the best heart doctors and we are doing everything to keep her heart healthy. That data is from years ago…don’t worry about it. That mini conversation made deep emotional waves in my heart. Life is hard but we navigate it with God. I trust that we’ll navigate difficult questions with God’s wisdom. I thought watching the documentary would celebrate how far we’ve come but it was actually the difficult journey of HLHS and Bowen successfully getting through the third surgery. I think our journey was traumatizing enough…maybe not so wise to relive another’s traumatizing journey. Too soon. Too fresh for us.

Maybe I should have watched it alone.

Bowen’s story is inspiring and gives a glimpse into the ups and downs life experiences of an HLHS family. His story also spotlights HLHS and provides hope for families that kids are extremely resilient and having a kid with chronic illness forms deep bonds among siblings and strengthens faith in God.

However, for us, too soon. We are still processing our own journey.

Categories: Faith journey Mom lIfe

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Welcome to my blog! My name is Esther and I'm so happy you are here. I'm an avid nature photographer and a daydreaming thinker. My posts revolve around photos of nature's beauty, homeschooling adventures with my 2 kids, sporadic reflections on my child's heart condition, Bible reading reflections, gardening feats, and other mish mash things. Hopefully you'll leave encouraged, pensive, or smiling at the simple things of life. Thank you for stopping by and hope you'll find some interesting posts to read!

11 replies

  1. I agree that the documentary likely triggered a panic attack. I imagine it would have that effect on anyone in your situation. I have yet to watch any documentaries about the Camp Fire, though I’m sure they are wonderfully done and full of inspiration. I’m afraid that watching them would result in panic attacks for me. You are not alone! Good job breathing to self soothe. I’ve found that inhale, count to 4, exhale, count to 4, repeat, works well for me – if I remember to do it. 😉

    Liked by 3 people

    1. Thanks friend! I don’t think I was ready for it. When I was watching it, I was okay but later the conversation with Ellis and with Elliot talking more about what he saw, I regretted watching it with the little peeps. So the guilt and the reliving trauma were not healthy combination for me.
      I agree that watching a documentary about the Camp Fire would trigger panic too. There’s a difference between seeing it as an observer and from someone who’s lived through it. Too close to home and traumatic. If there is one, you shouldn’t for your peace of mind.
      I tried to calm myself in the panic. It’s irrational and such a shame thing for me. ugh. It’s a learning process and learning how to be okay with it. Everyone’s got issues!

      Liked by 1 person

  2. Thanks for sharing this heartfelt post and then documentary sounds like it was meant to be watched together
    I do know that sometimes movies or docs can be too heavy for children but this one sounds like it was important to watch together
    And also – we reminded our children that everyone dies – sometimes sooner than others and then we always talked about heaven
    When my nephew died in 2017 – I found that the hope of heaven once again anchored us in our grief
    And reminded us (again)
    That our true home is heaven
    Now! With that said – life down here is still a gift to be cherished and treasured
    And so to not want to lose our children or a family member is part of the way god designed is!
    And so I try to remind everyone – children and adults – to remember that our true home is heaven and this world is a bit like an Ellis island waiting period

    God has a plan and he knew your children’s names before you did !
    And he will give you the grace for each day and each hour

    You are such a loving momma and such a gift
    Oh and don’t forget the way praise and worship music can keep our stress and anxiety
    “Put on the garment of praise” to cast off a spirit of heaviness !
    And Christian music is what had helped me keep joy high and anxiety low!

    Liked by 3 people

    1. Thank you Yvette for your encouraging comment, encouragement, and reminder! God does have a plan for each and every one of us and His plans are good. That’s a wonderful promise to hold onto when life gets overwhelming and circumstances choppy.
      I like your reminder that this world is temporary and our ultimate home is heaven. But then there’s this death thing, which of course Jesus conquered, yet it’s a scary thing to encounter and think about for ourselves and loved ones.
      Losing your nephew must’ve been a heartbreaking experience for your family. He would’ve been young. But our hope in Christ anchors us and give us peace. Thanks for sharing that.
      Thank you for the reminder that worship casts away worry and fear! Your comment at the end is so lovely and I’ll remember that in my journey as a mama to 2 small peeps…one who’s getting braces soon and the other who is thrilled and feels so grown up to turn the big 1-0. lol.

      Liked by 1 person

      1. well your comment addressed some very key points – and that is we GROW into our comfort with these topics and we grow with being able to release things.
        I used to worry so much (because we homeschooled for many years and it is really not my preference – blah – but God was always faithful and he ALWAYS gave us what we needed – (he is so faithful) and of course I see more in hindsight but even at the time – I felt his grace (actually “we’ felt his grace – my hubs and I did – because my spouse was around a lot as compared to some dads who need to travel for work) – but we took it one day at a time as God fueled us and helped us align our thinking.
        — so I had to learn to release the fist and have an open hand.
        I had to learn that setback and trials were part of a bigger plan.
        I had to lighten up and celebrate more as opposed to all the demands that used to weigh heavy on me.
        And before my nephew died, it was so cool because I had the chance to see him three times within the last few months of his life – and during one of those times I audio recorded part of his convo with me (with permission)
        So it gives me chills to see how God orchestrated all that – because even with free will, I believe God knows the future as clear as we know the past.
        I also believe the day of death is appointed and I still pray non-stop throughout the day (or try to pray here and there as I go along and then my spouse and pray with each other before we leave the house for the day or try to when we start our day)

        and the big age of ten is so special because no more single digits – also, best wishes with the braces – only one of my children needed them and it was a positive experience – and I pray that your child will have an overall good experience with their braces.

        sending a smile and virtual hug your way!


    1. Wow, thank you for your kind and encouraging comment! So appreciate it. 🙂 When I feel defeated, those are times God reminds me to give my troubles to Him. Who is this God that He wants to shoulder my burdens?!
      Take care and have a great evening.

      Liked by 1 person

  3. You have soooo much on your plate Esther that it cannot help but manifest it within causing you physical problems … I am sorry I am reading this late and could not write a few words to buoy you when you wrote the post. I hope all is well now.

    Liked by 1 person

    1. Thanks Linda! It was too much too soon for me. Maybe if the kids were not watching it with us, it would’ve been better. But the grim statistics and talk of death hit us hard.
      I’m feeling better now! It was good nonetheless to watch it and have a talk about how far we’ve come.

      Liked by 1 person

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