Remember when TV movies were on the regular networks all the time? Remember when they were ‘Special Events?’ I remember a few kind of fuzzy in my memory… The Burning Bed, I Know My First Name is Steven, Adam, The (God help us) Incredible Shrinking Woman…all pretty much horrific and tragic to some degree (Ma, why did you let us watch those, anyway?) Lifetime and Hallmark cable networks are home to those now, and ‘the big networks’ only show the horror of real people doing stupid things on amoral shows. But anyway…

I remember watching one TV movie that somehow seemed worse than many of the others. It was called Alex: The Life of a Child (actually based on a memoir written by Frank Deford, sportswriter and NPR fave, though I had no idea who he was other than Craig T. Nelson aka The Dad From Poltergeist in the movie). We watched it one Saturday night when my cousins and aunt and uncle came over. I remember sitting on the floor with my juice and Tostidos and watching this cute little girl, who was not much younger than I was, living life with Cystic Fibrosis. She was precocious and smiley and lovable, and she suffered greatly, and then she died. It was, like many TV movies (excepting The Incredible Shrinking Woman) based on a true story.

I think watching that marks the first time I really got it that bad things could happen to little kids that no one could control or help. Alex had a family who loved her and good doctors to take care of her, but she still died, having only lived the life of a child.

Of course now that I am an adult I have seen that reality a sad too many times. Bad things happen to little kids more than any of us care to think about. Because I am part of my over-protective, sometimes over-gratuitous generation X of parents, I worry sometimes that my kids, who really have everything, are missing something. It’s stupid, I know.

Even during Kaity’s ER/hospital adventures over the last 2 months, part of my calm came from the fact that I knew she could be so much worse. I know mothers who went to the hospital with an adorable, happy, active child and left with their arms empty. I know some who thought everything was fine and then suddenly it was quite the opposite. It would be easy for me to live in fear of that, and it’s probably only God’s peace and the fact that my kids aren’t quiet enough to let me process a complete thought most of the time that I am not.

Today Rod took Kaity to the doctor, again. This time, her doctor, our beloved Dr. C., was in the office. Kaity’s had a runny nose for a few days, and we’re careful to watch everything now. She’s also being weaned off of using a bottle and because she’s not a huge fan of her cups yet, she’s not drinking as much. Also, once again, we are getting ready to go out of town. Kaity was extremely restless last night and coughed a lot and has this same dry, red patch on her cheek that she had during both hospital trips. So we took no chances.

I was glad to let Rod take Kaity in today. It makes me sad that the only quality one-on-one time I’ve ever spent with my youngest has been during trips to the clinic or hospital (see above statement about parental obsessiveness!). Anyway, Rod relayed when he got home, after assuring me Kaity is fine, that Dr. C. came into the waiting room to talk to him. It’s obvious that Dr. C. and Dr. K., who saw Kaity a few times in the past and was the one who sent us to the hospital the first time, have been talking about her ‘case.’ (It’s weird to me that my sinister, hyper little almost-2-year-old has a ‘case!’ Most of the time she just is a case!). She is a bit of a mystery to them, because she wheezes only on occasion and gets over it quickly. Dr. C. believes she develops little mucous plugs in her lung(s) and has a hard time getting them out. He prescribed something to help ease the coughing, told us to give her breathing treatments 3x a day until it subsides, and to treat her preventatively with an asthma/allergy medication. (When she is feeling better and when we’re home, she’s going to get some lab work done to determine if she has allergies and will likely also get the H1N1 vaccine).

Dr. C. mentioned to Rod that normally, a child with these symptoms might indicate a case of asthma or cystic fibroris – wait! As soon as Rod got to that part of the story, apparently my face said it all. All I could see was little Alex sitting up in her bed asking the angel only she could see, “Which way do I go?” before she collapsed and was gone.

(God help the TV movie generation!) (BTW, the CF foundation offers a copy of the movie for a $12 donation).

Rod, as Dr. C. did with him, quickly assured me that Kaity’s symptoms are NOT indicating CF. I just now looked up the symptoms to be sure that this pediatrician whom we love and trust and has been practicing for over 20 years isn’t mistaken, and she really doesn’t sound anything like that. Thank God. We just have to keep an eye on her.

She looks so sad and small and yet so brave when she gets her breathing treatments. I am proud of her and happy for her health. I am just still sad tonight for the mommies of little Alexes who have to deal with CF instead of an infant anomaly. I don’t have anything else to say about it. I know research gets better and God works miracles, and mostly it would just be nice if no one’s real life was fodder for a TV movie tearjerker.

Comments

comments

  • AmyMarie

    I heart you….not just cuz you remember the Incredible Shrinking Woman but cuz your faith is so strong and your tender spirit is so much like mine!

    We’re kindred spirit you and I!

    <3

  • Becky

    Hey Kel-I remember my mom reading “Alex” when we were young, and then sitting there crying when she finished it. I knew even then I would never read that book because I could see how sad it made her. So I’ve never seen it or read it. However, CF was one of the “possibilities” and things I was tested for after that horrible ultrasound. I came back negative, which was wonderful, but it was something we pondered for a while. Health is so very, very precious. Take care of that little cutie of yours, and I will keep her in my prayers. I’m guessing this might be something she grows out of as she gets older. xoxo.