All I want for Christmas.

This week, the Christmas prep is underway at our home.  The lights all twinkling.  The pretty gifts starting to hide under cover of beautiful papers and magic ribbon.  And the yummy scented handsoaps are now out the bathrooms.  We no longer light candles, at least like I used to.  I fear my boys inhaling some invisible soot.  Ridiculous, I know.  But there are certain things that are just different.  I miss scented candles, so the antibacterial handsoaps will have to do.

This is also the first Christmas without nuts.  Dylan was diagnosed with nut and peanut allergies earlier in the year.  No chestnuts roasting on an open fire, around here.  Uh huh.  Nope.  No peanuts.  No almonds.  No traditional family coffee cake littered with crunchy accent pecans.  None of my mother's famous peanut butter fudge that I could eat a whole tin of as a child.  None of it.  Having to rethink traditions and navigate the holidays with a new insight...  or at least dodge the landmines.

Earlier this week, Michael helps me wrap some Christmas presents.  He is good company and in a bossy tone keeps telling his little brother who is playing a round of golf in the kitchen and family room, "No, no Dy-Dy.  This is a big boy job.  I am helping mommy with tape.  No, no Dy, you're not big enough."  If anything it does give me a good laugh.  And Dylan could care less, as he is repetitively practicing his golf swing.

But it is clear that Michael is excited at the completion of each package.  Each one wrapped in shiny gold or red striped paper.  He helps me choose the heavy fabric ribbon and tie each one on with impeccable precision.  I hold the pretty satin among my fingers, wrap over and around the first wave of ribbon, and then his little finger would, SMACK, hit the first tie of the bow to hold the ribbon in place for the final knotting tie.  He knows his job and he is going to do it with the intent of one of Santa's elves on Christmas Eve putting the final touches on toys for good children all over the world.

Then he helps me pick out the special gift tags.  I use pictures and greeting cut-outs from this year's extra personalized Christmas cards.  He is thrilled by the personal touches these add to the gift...  He continues to persist that each gift should have a picture of him...  just him.  For the record, I have never claimed that my kids are not narcissistic.  Evidently, Michael is comfortable with everyone's love for him.  Then Michael eagerly runs the package into the other room with urgency and care to place it gently with the other packages.  His joy and thrill of Christmas tasks is palpable.

Yesterday, Michael announces to me that he wants to write his wishlist.  He is intent on documenting for Santa Claus exactly what he wants...  an orange remote controlled car, a candy cane, and a space ship.  He asks that I write the words out on a separate sheet of paper so he can copy them onto his paper independently.  We sit together as he lets his wishes be know.  His letters are skillfully done and he is quite the artist by drawing the car and the candy cane he wants.  But to be sure that there is no room for Santa's misinterpretation, he asks if we can give Santa my version also, which he has adorned with Christmas ornaments along the bottom.

All of this on a day that my two sweet kids are featured in the Chicago Tribune.  Our story was shared with thousands of people.  Our fight with CF every day.  The lovely family picture of the four of us on the cover of the Pediatric Health Report still makes me laugh.  The facade.  No stains on anyone's shirt.  No one fully scowling.  And everyone looking at the camera at the same time.  A Christmas miracle in itself.

A better insight into our world is me trying to get dressed after our gift wrapping session. With the kids downstairs in the family room doing treatments while watching TV, program of choice, clearly, A Charlie Brown Christmas.  I decide to look presentable for the day...  a big deal on any given weekday.  I throw on jeans and a casual shirt and head for my unorganized make up drawer.  I shuffle items around quickly since I know the clock is ticking.  I pull out my basic black eyeliner of the drawer and delicately start to line.  POP!  Amazingly, over the ear-shattering TV volume of a Charlie Brown Christmas, I hear a tube pop off the vest and machine Michael uses airway clearance.  I run down the flight of stairs and to the family to put the tube back on.  Then, Dylan's nebulizer mask slides off his little head.  I put it back on.  Then, run back up to my bathroom.  As I rummage around the drawer for perfume...  POP!  Oh brother.  I run down replace the tube to its proper position and run back up.  Then I hear it give again.  Tubes are off of Michael's vest.  I fix them.  And this time, Dylan is pulling at his mask.  Dylan is smiling his brilliant, lovable smile with his dark glittering eyes.  "All done."  He makes the "safe" motion with the focus and certainty of a major league baseball ump.  Oh brother.  He fights me the rest of the treatment.

Then, I get the added joy of cleaning up after the dog that is eating cinnamon crumb muffins out of the trashbag.  Typical.

But a wishlist, huh?  Gosh, my Christmas wish is obvious.  Anyone who knows me wouldn't even ask the question.  The answer is there, before the words are asked.  Just spend a day with my family, actually an hour or two with us, and it is answered in kids' endurance and regimen.  It is answered in the daily struggle with what's normal and what's not because of CF.  And it is answered in my heartache.

All I want for Christmas is a cure.  A cure.

A CURE.

My head is pretty fuzzy this morning, but I awake to realize that none of our nebulizers had been sterilized last night.  32 stupid plastic pieces my boys' breathing relies on.  EVERY DAY.  I am frustrated that I can't ever truly rest my weary head.  I can't ignore that task.  Even if I am exhausted.   Most days I can barely keep up.

CF doesn't care about the nebs not being sterile.  Or an important meeting.  Or a busy day.  It's always present.  Always in the way.  It's a matter of maneuvering the best path each day.  And on top of it, dealing with, well, everything else that comes along with life.
This could be perceived as an annoying rant.  But, CF isn't about me.  I am not ranting out of selfishness.  I am ranting about much more than that.  It's about my kids who are fighters.  I am just the bystander in awe of their strength and their will.  But it *is* about the quality of life for them and for our entire family.

Yesterday, as we did evening treatments, Michael picks up a stuffed animal that he had found around the house.  Though he doesn't have a particular attachment to it, I watch him as he pretends to strap it into a vest and mask.  "Oh oh, Mommy, he has 20 more minutes..."  Then he continues, "Ah ahhh, Mommy," as he wags his finger in my face, "he forgot his sprinkles."  And then he motions as though he is delivering pills to the the furry animal.  The he hugs and cuddles it, "My baby."  He rocks it.  Outside, I smile at Michael and laugh with him that "Uh oh, he better take his medicine" and commending Michael for doing such a great job caring for his little baby.  But on the inside, my heart hurts.

It is one time that that I can see with crystal clarity that our normal is heartbreakingly NOT NORMAL.

Late yesterday, as we drive to get the boys' haircuts, Christmas music is pouring through our car.  Michael sweetly says over the melody, "Mommy, can I be you when I grow up?"

I am stunned.  I am almost unable to get a response out.  I am clearing my voice through the first words of my retort, "What?!  What do you mean?  Why do you want to be like me?"  I am expecting a contemplative answer, because that's just the kind of kid Michael is.

"I just want to be you when I grow up."  Simple.

I start crying.  A complete torrential downpour of tears.  It's the nicest compliment my kids can give me.  How sweet.  How wonderful.  And then the terror sets in...  seriously, I can never let my kids be as neurotic as me!  But what a truly special, thoughtful gift of words.  I am laughing and crying as Michael's little face shows confusion directed toward me in the rearview mirror.  "Mommy, why you cry?  Are you sad?  Why you sad?  It's okay, Mommy.  No cry, Mommy."  He continues to console me.

Although, I really want that cure this Christmas, rumor has it that I might have to wait a few years.  Possibly even a decade, but it's not that far off, at least that's what the experts say.  And I really believe that some Christmas, I will in fact get that wish.

Instead, this year, I will simply take my son's love and adoration and be thankful for all that I have.  EVERY DAY.

Oh, and if you happen to see Santa or write to him this year, would you mind putting in a good word for that cure?