Mom Confession: I Need A Heart Transplant

I saw a photo in my Facebook newsfeed the other day. It was a dog. Some beautiful professional shot. This dog has seizures and his owner is trying to win a contest. 300,000 likes. This dog had 300k people actually click a button to help him win something. My first thought should have been compassion for a dog facing a struggle. Or at least indifference. Deep down, I don’t want dogs to deal with seizures. But instead, I found myself hating that dog. (I am a horrible person.)

It was Rare Disease Day. The one day a year when we get to raise awareness for our daughter and her friends. We make a blip on social media for one day. A day when we remember that our daughter will never be cured. Can never be cured. She has seizures, too. And she is a human. I don’t have pets, and I will not even pretend that I love animals. I am not going to intentionally hurt or neglect or abuse animals, but I am not the person who God has called to be their advocate.

But I do have a little person who is affected every day by her seizure meds, which have now been increased. Again. And if this increase doesn’t work, we are starting another med. One that causes cognitive delay. So, in order to keep our daughter from having something horrible, we are going to allow something horrible to happen to her. And her current meds already have side effects that are bad. And I am looking at this dog and thinking, “I hate you for being so popular.”

If I posted Adelaide’s photo and said she had seizures and could win money for a charity if we got enough likes, she would get fewer than one hundred likes. And that would include people who logged into their husbands’ accounts and clicked ‘like’ without their husbands even knowing. I know, because Dave has unintentionally voted for things. (Yes, I am a horrible person.)

On Rare Disease Day, I was just reminded that my rare and unique daughter is just as unpopular as her Mama. And that is the root issue. I feel like attention for Adelaide equals her self-worth. And that people don’t care about Adelaide, because they don’t care about me. Since I am unlikeable, people don’t like her. Or they are indifferent. Somehow, both our self-worths are tied together and tied to things that don’t matter. At all.

I didn’t enter Adelaide into the Great Bike Giveaway, which is a popularity contest to get adaptive bikes to kids with special needs. I knew Adelaide wouldn’t win. I knew people wouldn’t vote for her. So, I didn’t even try. I was so afraid of the rejection. I thought for her, but now I realize it was for me. I had, once again, allowed love and approval to become idols in my life. It’s a hard idol to slay.

You see, I have received messages from people. Strangers. Acquaintances. Not friends, because {Thank you, Jesus!} none of my friends are dumb enough to say things like this: “Adelaide would have more followers if she was worse.” “I read your blog and Adelaide is way better off than other kids. That’s probably why people don’t read your blog.” “I think more people would follow your blog if Adelaide was missing something we could see.” Instead of hitting delete right away and moving on with my life, I allowed these messages to take root in my heart. Complete nonsense. But they grew. People don’t care about Adelaide because she wasn’t in the NICU. People don’t care about Adelaide because she hasn’t had visible surgeries. People don’t care about Adelaide because she doesn’t have a trach/gtube/prosthetic/fill-in-the-blank-with-anything-else-you-can-think-of. And all that is poison in my heart.

That’s why I need a heart transplant. Because apparently mine is dying. When you find yourself jealous of a dog, you know things are at a critical level. I need God to remind me at every moment that I am completely pre-approved by Him. That He chose me. That He loves me. That He loves Adelaide. And even though we aren’t popular people, we have all that we need. And we may get one day, not even a week or a month, to make our disease known to the world…but it doesn’t matter. In the grand scheme of things, none of it matters. So, next year, when Rare Disease Day is competing with Leap Day, I will just sit back and remember that God loves Adelaide. Every single day. Not just on the last day of February.

And I guess it is time to reread one of my favorite books from last year. Because Adelaide and I are already pre-approved.

love idol 3Photo Credit: jenniferdukeslee.com

And maybe I should go vote for that dog…

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2 thoughts on “Mom Confession: I Need A Heart Transplant

  1. […] in one week. Rogue and reporting to zero people. And probably better for now, since I sometimes get caught up in numbers and forget who I […]

    Like

  2. jenz3977 says:

    Your girl is gorgeous. I don’t know you at all in real-life. But I care.

    Like

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