Cystic Fibrosis

Lamentations

Don’t be surprised if you ask how I’m doing and I skip the usual “fine.” I have to be honest. I’m not fine.

Lately, I’ve been avoiding conversation because I just don’t want to answer that question. I’ve always been the type of person who takes the “Hi, how are you?”, question literally. When I ask someone, I really want to know. I can't help but wonder if people really have time to hear, or even want to know how I am doing, really.

But I need to lament. (different than complaining) To lament is to: 

  1. mourn

    synonyms:mourn, grieve, sorrow, wail, weep, cry, sob, keen, beat one's breast

    "the mourners lamented"

    • express one's deep grief about.

    • express regret or disappointment over something considered unsatisfactory, unreasonable, or unfair.

I believe it’s healthy, and maybe even Godly to lament. After all, there's an entire book in the Bible devoted to it. (Lamentations)

"If your heart is broken, you'll find God right there; if you're kicked in the gut, he'll help you catch your breath."  Psalm 34:18 MSG

All three of my children have been suffering physically, emotionally, and spiritually for the past several months and it has nearly ripped my heart out to witness. It doesn’t feel natural to see your child suffer. As a parent, you want to take it away. I gladly would. But reality doesn’t give you that option.

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Our daughter Ella broke both of her heels in early December while performing for an America's Got Talent audition. She has been confined to a wheelchair, not able to put weight on her feet since then. This has been the most difficult experience in her entire life. You see, Ella is highly driven and active, never one to sit still for long.

And the thing she loves most in this world is gymnastics. It’s been devastating to see that taken away from her. Even harder to find her constantly in her bedroom, alone, with the lights off. I fear depression is on the brink. I know God’s teaching her something, but it sure is a painful process.

 

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Anders, our youngest was hospitalized a few weeks ago, in fact just days after our family made a difficult move. He had been persistently vomiting and it became clear, it wasn’t a norovirus type issue. “What is wrong with my baby?” Finding him, ashen faced, exhausted, thin, pathetically laying in a warm shower to find relief, night after night was wearing on us all. And watching him stoically allow a tube to be inserted through his nasal passage down to his stomach was wrenching on my heart. “Please let me take his place Lord!”
 

My oldest has been stricken with debilitating back pain. Not something a fifteen year old should deal with. Diagnosed with scoliosis this summer, he goes to physical therapy twice a week. But increasing pain has us puzzled. Scoliosis shouldn’t cause pain. This week it went to an all-time high. My strong, teenage boy needed help moving from the couch to the floor. He was near tears, scaling his pain (1-10) at an 8. We brought him to the Emergency Room this week and a doctor mentioned the “C” word to us. 

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Our two sons already deal with a life-threatening disease, cystic fibrosis. It’s a lot to handle for anyone. At the thought of cancer, Carson told us, “I’m done. There’s no way I can handle both.”

I quickly told him, “It is extremely unlikely you have cancer.” He fired back, “Right, and none of us thought I had CF either.”

What do I say to that? ...

John 16:33 is a good place to start. But still, it's hard!

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

Carson is having three MRI’s on Saturday and we are being referred to a specialist at Gillette Hospital to figure out why he is having so much pain in his back.

Ella had an MRI on her heels today so we can see how things are progressing.

Anders is taking additional medications to combat his GI issues and if things don’t clear up, he will have an endoscopy in February. The kid takes over 640 pills a month. He is seriously my hero.

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Don’t worry, I haven’t lost my marbles. I’m not going to drive off the scenic overlook or anything. But to keep my sanity, I just need people to know how afraid and at-the-end-of-my-rope, weary I feel. Not so they’ll feel sorry for me. Not for attention. But to simply recognize. I want them to know why I might have a far-off look as I stand in line at the store. Why I may seem more tired than usual. Why I get impatient trying to find a handicap parking space because someone is inappropriately using it.

These experiences certainly put things into perspective for me. As I scroll through social media and listen to the radio and news I can quickly discern what is lasting and worth hanging onto: My faith in Jesus, family, friends and being kind to others. Nothing else matters. Not football, not money, power, or material possessions. 

In spite of our circumstances, I still have joy. I love my husband, my children. Our puppy gives me comfort. Betsy makes me smile. The lake we're currently living on gives us enjoyment and I am so grateful for God's provision. We’re going to take a much needed family vacation in a few weeks and we can’t wait. Lord willing, my daughter will be out of her wheelchair and able to put her feet in the sand. We’re praying Carson and Anders will have relief by that time as well.

Life is really, really hard sometimes. God is still good. Each day is new and I am able to find reasons to praise him.

Lamentations 3:22-23  "Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
Great is your faithfulness."

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