Monday, January 31, 2011

My Apologies to Eric Carle

Let us see our days as our children do . . .

Mommy, Mommy, what do you see?
I see dirty dishes demanding me.

Little one, little one, what do you see?
I see a sink of bubble fun for me!

Mommy, Mommy, what do you see?
I see a cluttered room calling to me.

Little one, little one, what do you see?
I see my wondrous toys waving at me!

Mommy, Mommy what do you see?
I see a laundry pile laughing at me.

Little one, little one, what do you see?
I see my cozy clothes all clean for me!

Mommy, Mommy, what do you see?
I see nothing fancy in the fridge for me.

Little one, little one, what do you see?
I see easy toast and tea for me!

Mommy, Mommy what do you see?
I see a sagging sofa sighing to me.

Little one, little one, what do you see?
I see a story spot just for me!

"It will be gone before you know it.  The fingerprints on the wall appear higher and higher.  Then suddenly they disappear."  ~Dorothy Evslin


Sunday, January 30, 2011

Weekend Recipe : The Shake

I never let Rees drink just a cup of milk (Well, sometimes I go soft, like during morning sickness.  Or the flu.).  Why have just milk when you can add hundreds of nutritious fat and protein calories easily?  So the beginning mixture is this :


Then comes the creative part.  Right now, he's into the coffee/caramel taste, which means I do this :



Sometimes he likes some Nesquik added to make it like a mocha.
Sometimes we don't do the caramel and toss in a candy bar or overbaked cookies (Ahem).

Also, a plug here for the Vitamix, an expensive piece of kitchen ware that I use several times a day.  Yes, a day.  With this thing, I can also do frozen fruit instead of ice cream and sneak in some nuts, pieces of spinach or carrot, and even a small tomato, making it an antioxident stew.  This does not have as many fat grams, but is so full of other good things, it's hard to ignore.

When I'm on top of my game, I'll triple the shake and stick the container in the fridge to ensure he drinks the good stuff all day.  And yes, I know that he's sixteen and shouldn't he be making his own shakes and don't baby him and he'll never know how to do things on his own and enough already.  He does plenty.  I don't mind and he says thank you so we're fine.  Every family finds their own groove!

Happy weekend and get shakin'!


Thursday, January 27, 2011

Missing the Clapping

This afternoon when little Joseph was stretched out in my lap, I cupped my hands and began to gently, rhythmically pat his back and sides, like I did on Rees for so many years. Three or four times a day and sometimes in the middle of the night if he was sick and coughing, we would cocoon together on a bed or couch and do "PT", as we called it.  Chest Physio Therapy.  Clapping.  When he was little, it would put him to sleep so we timed it for naps and evenings.  As he grew, we would watch half hour videos like old Sesame Streets or Hero Classics.  Hogan's Heroes and the A Team later on.  We were together.  We were close.  When John and Clare came along, we all cozied up together, for PT.

Joseph jostled contentedly as I vibrated his back ; Ian and Luke looked perplexed.  "What're ya doing?" one of them asked.  "Why, PT.  Just like we did for Rees."  They had No Idea what I was talking about and I felt . . . sad.  They didn't know what PT was and I wished they did.  You see, Rees has been using a hand-held flutter device the past four years and doesn't need me to take care of clearing his lungs.  That thing that seemed so confining, so abnormal, now gave me a nostalgic ache about its passing.  No more PT.  To be sure, we still sit together (in the evenings only now) while he takes care of himself and uses the flutter.  We have been forced to do this.  But what have we gotten?  A terrible imposition?  A hold on "real life"?  Hardly.  What we got is a Very Cool Teenager who drives away by himself to go to youth group and is looking for a part time job, but who still wants to hang out and watch movies with his parents (Have you seen Inception? Wow.).  Who still stays up to talk about movies and whatever topics they inspire long after the credits roll.  Who says things like, "I still have to do my lung chores, can John and I stay up and play Settlers of Catan?  (Yup, but it's 10pm ; be quiet and don't wake us up!)

This is real life.  It is good.  It is better than good.  PT made us cocoon in the beginning ; now we just do.  I miss the clapping, but I sure do like what it gave us.

And all our babies have loved to be clapped, CF or not!

Tuesday, January 25, 2011

Two Mothers

Two important stories here and here.  Such a shocking difference of mothers : I could hardly breathe after reading of the first and could hardly refrain from smiling through tears after watching the second.

We are human beings with eternal souls, separate from animals that leave their troubled ones behind to perish, ensuring their own survival.  We love and give and sacrifice and somehow we do not fall apart, but get smarter and stronger and more loving.  Cystic fibrosis looks terrible on paper, but real life aches with love and pain.  All life, not just when there is a Diagnosis.  I fret over all of my kids, with and without CF and for all different reasons!

And now I must get big teen Rees and hook up his IV, because he's home with a PICC line in, which is excellent when the CFers get bigger and their mothers get less nervous about All These Things!


Thursday, January 20, 2011


I'm hoping you found this blog because your little one has been diagnosed with cystic fibrosis and you're searching for answers about the future.  Fifteen years ago when we were told that our 9 month old had CF, the nurses sent other mothers into our room to talk and visit and listen to me cry and yell, but the new HIPAA rules prevent that now.  So.  Here I am.  Please make a cup of tea and visit with me.  Cry.  Yell.  Look at my pictures.  It will be OK.  It will be better than OK.  Holland is gorgeous  (Have you read that allegory?  It's in a page at the top under HELPFUL LINKS).  More coming.