It’s. Not. Right.

There are too many cars here, I think as David, Latham and I circle the 7 story underground garage until we finally find a place to park.  It’s early, only 9:15am and I shutter to think how many more cars will park in this place.  There are too many cars here, I think again, except this time my thoughts spill from my mind and out of my mouth since David quietly agrees with them.

“It’s not right,” he says.

“It’s not right,” I agree.

We don’t say another word.  We don’t have to.  Those three words say it all.  It’s not right kids get sick.  It’s not right kids hurt.  It’s not right parents have to watch their babies suffer.

It’s. Not. Right.

We find a space to leave our van in the children’s hospital garage, a place I never thought I’d have to park.  We’re here because a couple days ago, our family physician told us to test our 23 month old son, Latham for Cystic Fibrosis, a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas which makes breathing extremely difficult.

She is concerned, she tells me because she can’t find the reason behind Latham’s chronic diarrhea he’s been experiencing the past 6 weeks.  She ruled out viruses and parasites through a series of tests she ran on his stool samples last week and since two of the symptoms of Cystic Fibrosis are extreme weight loss and diarrhea, she says we need to cross the deadly disease off the list of possibilities, too.

I.  Freaked.

What if Latham has Cystic Fibrosis?  What if Latham has Cystic Fibrosis?  What if Latham has Cystic Fibrosis?  The question swirls in my mind like a tornado.  I could barely eat.  I could barely sleep.  I could barely think.

I call the children’s hospital to make an appointment for the test our doctor said Latham needs, a sweat test.  It’s a no needle procedure that measures the amount of chloride in my little boy’s sweat.  The first date they had available the nurse on the phone informs me is April 2nd.  After I tell her in a very honest and teary way there was absolutely no possibility I could wait that long, she said she would squeeze us in Monday, March 22nd. 

4 days.  I would have to wait 4 days.  4 days.

My mind was mush as David, Latham and I stepped in the white lightening elevators 4 days later and ride our way up to the ground floor. 

“Where did we park,” I ask David.  “I didn’t even look.”  When David shrugs, the woman riding with us said, “Purple planes.  You parked on the purple planes level.”

I smile to thank her.  It’s so kind of her to notice.

After arriving in the lobby, we wind our way past the rain forest lunch room and radiology, through the working toy train station and the burn unit, then ride up 2 levels on the elephant elevators and walk across the hall to the main lab.  David catches my eye when we see the sign hanging on the lab door.

sign

It’s.  Not.  Right.

Pam is the nurse who greets us when we walk in the room.  Her son is the quarterback for the University of Northern Iowa, she proudly tells us when David mentions the t-shirt she is wearing.  She smiles while talking non-stop about her family, the weather, and Latham’s curly hair.  She loves his locks, she says.  I’m so grateful for the chatter.  David and I are paralyzed with fear while she’s running the test on Latham and she knows it.

The test itself is painless.  Pam cleans our son’s right arm and places two electrodes on it which sends a tingling current that causes sweating.  When the 5 minute test is finished, she keeps chatting us up while she seamlessly repeats the same procedure on his left arm.  She then collects the two pieces of gauze which holds Latham’s sweat and says lab results would be ready that same evening.  She said she would page the results directly to Latham’s doctor.

I try to go about the rest of my day as usual while I wait for the results.  I feed the boys lunch.  I put them down for naps.  I go to Sonic for my route 44 daily dose of diet vanilla coke.  I soak up the sun and play with my boys outside for a couple hours.  I greet David when he gets home from work.  I feed everyone dinner.  I pick up the phone when it rings.

And I hear her voice, my doctor and I don’t even know what she is saying for the first few sentences.  GET TO THE RESULTS, I scream in my mind while I listen to her spout some random numbers and blather on about whatever else she said that I can’t remember.

This isn’t good, I think to myself.  Why is it taking her so long to tell me whether or not Latham has this deadly disease?

“…which means Latham is negative,” I hear her say all of a sudden.  I focus immediately.

“What does that mean,” I want to clarify.

“It means,” she says, “Latham does NOT have Cystic Fibrosis.”

I all but fall to the floor with relief.  And so does David.  While we still have to discover what is causing Latham’s chronic diarrhea, we at least so know what’s not causing it:  a deadly genetic disease.

But it’s not right other parents don’t get the same good news.  It’s not right their children have to suffer with Cystic Fibrosis.  It’s not right their family has to circle the garage day after day to park in the purple plane lot, ride up the lightening elevator to the lobby, wind their way past the rain forest lunch room and radiology, through the working toy train station and the burn unit, then ride up 2 levels on the elephant elevators to the Cystic Fibrosis unit for treatment.

It’s. Not. Right.

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12 Responses to “It’s. Not. Right.”

  1. krista says:

    my heart hurts thinking about this. for us, for them, for every single one of us.
    .-= krista´s last blog ..the bright side project via petunia face = the road from there to here =-.

  2. I’m so sorry I missed this post last week and that you had to go through this, Tasha, but I am very, very glad that Latham is okay.
    .-= Kristen @ Motherese´s last blog ..Tour de Trust =-.

  3. Laura says:

    Prayers for you and Latham, and prayers for those families of sick little ones.

    Your post was poignant, but what I loved was that it wasn’t all about you and Latham. I could see your heart as you wrote about the plight of others.

    Thanks for that.

  4. Emily says:

    Really sorry you had to go through that experience. Glad that the results are negative but I am keeping my fingers crossed that you find the answers soon so that Latham feels better x
    .-= Emily´s last blog ..This week =-.

  5. Angela says:

    Nope. I can’t imagine anything worse than horrible diseases happening to little ones. Nothing. I cried all through this post. I am so glad his results were negative. You will all be in my prayers.
    .-= Angela´s last blog ..lazy daisy =-.

  6. Thank the Lord that Latham tested negative! We will keep him in our prayers that he’ll be healed of the diarrhea and a cause can be found.

    And you’re right, it’s NOT right that ANY baby have to go through these illnesses.
    .-= Kim Yamaguchi´s last blog ..Whew! =-.

  7. What a powerful post. I was so worried for you, and then so sad for parents who do, in fact, receive this news. Thank you for sharing.
    .-= Jana@Attitude Adjustment´s last blog ..Apocalypse, Coming? =-.

  8. This is a really powerful post. I was so worried for you, and then at the end, sad for parents who receive this news. Thanks so much for writing this.

  9. Jo says:

    Glad to hear it. Coming from a mother who had tests done and found out bad news I ‘m very happy for you! And thank you for acknowledging those who dont recieve good news.

    Hope you celebrate!
    .-= Jo´s last blog ..Ok So We’re in.. =-.

  10. Kelsey says:

    i am in tears! i am so thankful and happy that Latham is clear of CF. What a scary experience & such a blessing all at the same time.

    You are right it isn’t fair that some parents have to deal with sick kids. I did read a popular book a few months ago that seemed bring some clarity to the why’s of situations like sick kids & the horrible things that happen in life. The Shack. I recommend it if you haven’t read it.

    Again I am SO THANKFUL that little man is okay & thank you for this post, I have been thinking about you a lot the last few days after I read your last blog.

  11. Nina says:

    We are so so happy that the test was negative. Unfortunately, it is just one of the many terrifying moments most parents go through in raising their babies. 🙂 and for the most part things usually turn out fine.
    I think it is a great article, you should really consider submitting it to one of the parenting magazines. So many mothers can relate to the anxiety and all the other feelings this type of experience provokes.

  12. Corinne says:

    My heart broke about five times reading this, thinking about the families that go through the tests… and the results.
    So happy for you all that Latham’s test came back negative! Hope you find the cause of his diarrhea soon (that must be awful!!)
    .-= Corinne´s last blog ..Beads, dreams and pj’s =-.