Talking About My Heart Condition With Kids+ Singing is Cardiovascular?!

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Hi everyone!   How was your memorial day weekend?  I am so thankful to live in a country where brave people have made the ultimate sacrifice  in the fight for and preservation of freedom.

So I've decided to  dedicate this post to giving you guys a glimpse into life with HLHS.  If you want to learn more about what HLHS is, click here.

The other day, I mentioned to my mom that I needed to take a medication.  My little cousins were over when I said this.  (Cousins meaning you know they are related to you somehow, but for sake of simplicity, you call them cousins 😁.)  When I said this, my mom told me in effect that she thought that this would be a good opportunity for me to talk about my heart condition to my little cousins.  Of course, I was happy to because I see myself as an educator for HLHS.  I told the kids that I take medications every morning and night to help my heart.  (If you are curious what those medications are, see this post.)  My mom further explained that most peoples' hearts have 4 "rooms" but that mine has only 2.  My little cousin, who is 6, understood this and asked if I had had surgeries for it and remembered the time I went in an ambulance 🚑.  (If you are curious about that crazy adventure click here.)  It is definitely a privilege to be able to use the difficulties God has placed in  my life to help teach kids to be accepting and even extra kind to those whose health makes them different from them.

On to another topic.  Did you guys know that I love to sing 🎵?  If I had to list my three favorite hobbies, they would probably be singing, cooking, and writing.  (Not necessarily in that order 😉.)  I have been practicing for a little performance in my church and in one part of the song, the singers have to hold a note for a little longer than in comfortable. In practice, I was the only person who had to take a breath when holding the note. This was a bit problematic because it was the last note of song being sung by a few people.  I talked to my friend after the practice about it and chalked up my  failure to having less oxygenation than most people.  Fun fact:  People with HLHS have lower oxygenation than most people!  Later that day, I talked with my mom about he situation and she confirmed my theory.  She even said that singing can be cardiovascular.  No wonder I was having trouble with that!  Thankfully, in practice, our director very graciously shortened the length that the last note will be held.  In the mean time, to keep my lungs strong and keep my oxygen levels as high as I can, I am exercising and practicing deep breathing!  Of course, it's frustrating to have limitations that seem to hold me back at times, but these limitations give me more chances to rely on God and push myself to do my best!

That's all for now!  Check back on Friday for a new post.  Hint:  It may or may not involve cupcakes 😋.

Comments

  1. Hi Lily!
    You are an amazing educator of your heart condition! I enjoyed reading your post about yourself and your dependence on God due to your heart condition. Keep up with your blog . . . you are a great writer! I hope more people read your blog because you are a lot of fun and a wonderful teacher:)
    Love,
    Kathy Perez

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    Replies
    1. Thank you so much, that means a lot to me!

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