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April 21, 2009

Today I called the pediatric cardiologist and made appointments for my children.

“Why do they need to be seen?” the efficient voice asked as I sat staring at my blue Busy Mom planner.

“Um, their grandfather died two months ago of cardiac arrhythmia, and we were told it can be a genetic condition. The doctors in Indiana told us that our children need to be tested.”

She began to enter their information.

Jon-David… Hannajean… Lucy… Birth dates and Social Security numbers… I had to pause to remember some of the details. I gave the receptionist our insurance information. I wrote down the appointment time.

Then I got off the phone and felt the fear rise up, up, up.

No one understands my fear – not one person in my life. I’ve talked to Hugh and my grandmother and a few friends about my panic that one of my children has this condition and each response is the same:

“Jess, how great that we found out how David died…and that your kids can be tested…Then you’ll know and it could be treated.”

Well, to be honest, World, I’m actually just really scared. I know it’s not likely that my children have this disease, but they might. And then what would I do?

Curl up in a little ball, maybe. Not come out.

That’s the fear, isn’t it, Moms? The ultimate. It’s the thing that some women face… and the rest of us can’t imagine how they could breathe after losing their little hearts.

I didn’t feel better after making the appointment; I felt worse. Making the appointment reminded me that David died and Hugh will die someday and maybe my kids could die… Then I just felt sad and weird and depressed and wanted to order lots of food from Lotus Cafe to make me feel better.

Instead of eating lots of Chinese food, maybe I’ll try to tell Hugh how I am feeling. I should tell him that I feel scared that he’ll die, too. I worry about our kids more than I used to…and maybe he needs to know that.

He loves me. He’ll listen. I just need to put down my planner and my fears and go talk to my family.

9 Comments leave one →
  1. April 21, 2009 10:39 pm

    Lydia wore her new swimsuit Sunday. Coming up out of the neckline was a thin pale scar. It’s hidden under her clothes most days and I forget. I forget the visits to the cardiologist, the news that she would indeed have to have surgery, listening to the doctors and surgeon and nurses explaining what to expect with open-heart surgery. I forget the panic when she was wheeled off in a little red wagon, “Wait, already?” I forget sitting beside her bed in the recovery unit as she screamed silently because no sound could come past the breathing tube. I forget the wires and tubes and holding her tiny hand as she fought them. I forget sitting on the floor trying not to pass out.

    But I also forget that in 2 days, I was chasing her as she ran laughing down the hospital corridor with pacemaker wires coiled into her pajama pocket. I forget that no one would believe that she had just had open-heart surgery. I forget because she has been given an absolutely clean bill of health. Her heart is 100% normal and she can run and jump and grow like any other kid.

    But really, if you want to eat copious amounts of Chinese food, I’m coming over. Just make sure to get extra fortune cookies.

  2. April 21, 2009 11:07 pm

    I understand your fear. The what if…the wondering…the waiting is the scariest of all. Lots of prayers and hugs to you.

  3. April 22, 2009 12:26 am

    Jess, I know that fear.. HLHS can be genetic and I need our “big kids” to get echos done this summer.. and I’m putting off getting the appointments.. (they won’t have HLHS but they may have a minor issue that will need to be observed).. And of course, I know the fear of recieving a poor diagnosis.

    But I ALSO know that our Lord is big enough to handle your fear.. and His Grace is enough to sustain you throuhg it. Yes, talking to your family is the right thing to do… Put the fear in the light and let the love you get from God and Hugh and your family drive it out!

    Praying for peace. And loving you from here!

  4. April 22, 2009 8:56 am

    hey jess, its been a while since i commented on your blog, but i just wanted to let you know that you are in my thoughts and prayers daily.

  5. April 22, 2009 10:23 am

    I have struggled off and on with these kinds of fears for most of my life, sometimes to the point of breaking down. Only when I truly let myself believe that God really is in control, no matter what, can I have peace. I know that that peace is always available to me, but I don’t always accept it either.

    Praying that today you will feel the peace that passes understanding in a powerful way.

  6. April 22, 2009 1:49 pm

    Step away from the Chinese food…unless it happens to be msg free. 😉
    Seriously, I think you’ve nailed this is a mom’s worst fear. It’s worse even than our own deaths (because we do know that everybody dies, even us). If we die, that’s it, we’re dead, Home for good, no more worries. No one expects a person to keep functioning once their heart has stopped. But what if, as you so aptly put it, we lose our little hearts? Same condition- heart stopped beating. But no heaven, no freedom from tears, and somehow we have to keep going. And so we put our hope in Christ alone, who has conquered death and fear once and for all. We have to tell our Father, “I can’t protect this little heart, but it was yours way before it was mine and you love it (somehow) even more than I do. So I’m putting this heart that I’m all tangled up in into your hands.” Isaiah 26:3 says, The steadfast of mind You will keep in perfect peace, Because he trusts in You.” (NASB) The KJV has a beautiful translation of this verse. It says, “Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.” Talking to Hugh is the right thing. Together you can love your kids and support each other, and keep your minds stayed on the One who promises to keep you in perfect peace.
    Praying for you, and for test results that will comfort and reassure you.
    Oh, I was finished (and it is really long, sorry!), but this caught my eye, and I feel like it is for you, right now.
    Isaiah 66:12 For thus says the LORD, “Behold, I extend peace to her like a river, And the glory of the nations like an overflowing stream; And you will be nursed, you will be carried on the hip and fondled on the knees.” (NASB)

  7. Karen permalink
    April 22, 2009 2:38 pm

    (((hugs))). I can only imagine. As a mom, I do get the fear. I would be a basket case too. TJ wrote some wonderful verses, and I pray that they speak to you and comfort you. Do talk to Hugh; don’t bottle it all inside. Love you, hon. (((hugs))) again.

  8. April 23, 2009 10:01 am

    I just posted about this fear thing and health yesterday. It was my prayer request post. I understand more than you know.

  9. April 23, 2009 10:02 am

    May the peace of God come and fill your heart and mind today!

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