Sad Christmas Memories

Christmas was wonderful this year, but I actually struggled a little this month because it brought back so many memories of our Christmas last year with Lilly and the phone call we received just days before Christmas that she may have cystic fibrosis.  I don't know why it bothered me so much, but just when I think I have a handle on things, I tend to have some bad days, so I shouldn't be surprised.  While I was reading through some support group blogs, which helps me when I am down, I came across this post.  It was not written by me, but everything this mother says describes exactly how I feel on a daily basis and I feel like I could have written it, at least the parts of dealing with your child's illness (I admit, I think towards the end it lays a pretty big guilt trip on people for not donating to the cause - not my intention at all!  I don't really agree with that, but I can definitely understand her frustration if nothing else.)

Some days... 

Some days Its ok. Some days I can think positive. I can see the light in a childs disease. I can see her fight, her innocence in thinking 20 pills a day is normal. I can work hours of breathing treatments and airway clearances into our schedule like ballet class or nap time. I can ignore when she coughs and when she tells someone with her sweet little voice in passing she has a cold and I can smile and keep going with out having the urge to tell them it isn’t really a cold, that to call it that would be like calling cancer a bug or aids the flu. Some days I can hold my breath while she coughs and then ask her questions like what would you like for lunch? or what did you do today? I can act like it doesn’t pull at my heart, like I’m not every-single-time saying a prayer in my head fighting to keep my legs straight and not bow down on my knees right then and there. Some days I can talk of a cure and tell people about the enormous strides we’ve made in science and how some children are living into their 30’s, 40’s and beyond. I can say this and skip around the thought of the ones who don’t. I can tell about her blood work and x-rays, about how at 4 years old she already has inflammation and irreversible lung damage with out picturing them, her tiny lungs. Without watching her breathe in and out and wondering each time if she’s breathing in a new bacteria, a new illness that will cause more little foggy marks in radiographs that should not have to be taken of a child this small. I can talk with a grin of the other things that fill our lives and how a disease will not stop us doing these things that we love. 

And somedays I can’t. 

Today I can’t. Today telling our story and reading others makes me ache to the bone and causes tears that overflow and just will not stop. I think about every time I read the words ‘he’s doing good’ and how they’re followed by a ‘for now’ and every time I hear a “we’re lucky” it’s followed by a list of things that haven’t happened ‘yet’ and how only one or two hospital stays a year is considered a healthy cystic fibrosis child. I think about how this effects us, where we’ll fit into this picture. I think about how healthy my child looks, thick glossy blonde hair, gleaming blue eyes, rosy ness in her cheeks and not a sign to strangers that her body is fighting with everything it’s got. I think about how funny it is that in one breath I can know with all of my being that someday she’ll be in pain and I won’t be able to stop it and in the next breath I can feel bad about asking for donations. Worried Ill make someone feel uncomfortable or be too pushy. I think about the guilt this causes as a mother and the confusion it causes as a person. Today I don’t care. Today I cry, my body heaving and my head aching with never ending relentless thoughts. Today I want a cure so bad I can feel it in my pulse. Each muscle straining with the weight of it, each nerve tingling and my head fuzzy with the energy I put into willing God for it. Today I wonder if her cracked nails are the beginning of clubbed fingers and toes. I wonder if she’ll be allergic to the antibiotic I have to put her on tomorrow like the three previous ones we’ve tried and if so, how will she do with her first I.V. I picture needles in her veins where scars will be later. I picture bruises on arms small enough to wrap my thumb and first finger around. Today I wonder how I will stay strong. Today all politeness is gone. I’m angry at those who will not donate five dollars; those who watch me, listen to me and do not ask more questions. I want emotion, reaction out of everyone. I want to be selfish and sink into my own pain. I want to know that it’s ok for a mother to have grief. I want to make each and every person I know realize that children are dyeing of this. My child could die of this, probably will die of this. Today it is not ok that there is not a cure. Today it is not ok that every person I know, that knows my daughter is not fighting for a cure with all of there hearts. 

Tomorrow it will be ok. I will understand. I will know that when someone has a thought of this, tries to imagine it, even has an emotion for it, it will be gone by the time they think of their next meal. It will be no more real or urgent to them as some ones kid who is sick. And I’ll be ok. I will recognize the formalities of life and its ties to mans experience. I’ll know that what we don’t see or touch in our own lives cannot be ingrained in us. That when it is not our child gasping for air and coughing until they vomit we cannot understand. It is not our fight. And I will be thankful for those who do brave into our world. I will identify the immense selflessness it takes to walk into such pain and be a light. To take someone’s grief and make it your own. To donate and walk and educate when it is not your child. To willingly glimpse a reality that is not yours. 
Today is today, not tomorrow or some other day but today. And today I cannot understand your happiness, your guiltless existence, your ignorance, your reality…only my pain. 
~Bree Alsman

Christmas at Nanny and Papaw's House

Must...

get...

away!

My girls :)

My hubby :)

New bicycle!

Thank you Nanny!

Thank you Papaw!

Santa Came!

Santa came!  And left a note!

Olivia's favorite toy - Buzz Lightyear!

 A puppy dog?  For me?

Roller skates!

One of Mommy's best presents of all :)

The Hungry Hungry Hippos Game has been a hit!

Daddy loves his Reese's Pieces!

Snowman donuts for breakfast - yum!  

Reading one of her new Wonder Pets books!

A Cranfill family tradition starting early - we love our slot machines!

Thank you Memaw!

Olivia's new superhero cape - thanks Aunt Holly, Uncle Matthew and Cooper!

Mommy and her girls...

Olivia and Cooper watching Olivia's new movie, "Up"

Trying to walk...

Christmas Eve

Sauteing scallions for beef tenderloin...

The chefs!

Cookies for Santa are ready!  Oh, and don't forget the apple for Rudolph!

Santa apparently thought we were very good this year!

A White Christmas!

Christmas Eve was my favorite part of Christmas this year.  Although I didn't get much sleep the night before (Jeremy has a LOUD snore that is wearing me out!), after a quick nap I was ready to go.  We hosted Mom, Dad, Rusty, and Memaw for an early dinner of beef tenderloin, new potatoes, and caesar salad.  This was my first venture in making a beef tenderloin.  You can tell I am a newbie because when Jeremy called me from the grocery store to say that the beef costs $85.00, I am almost flipped!  Don't worry - thanks to a friend of mine, we found beef tenderloin for $6.99/lb. rather than $20.00/lb., so I was still able to make it without emptying my bank account.  Olivia was so excited to help me - she was instrumental in sauteing the scallions, as you can tell from the picture!  Memaw brought a special gift for the girls - the book a Night Before Christmas, narrated by Memaw herself.  I loved it so much I almost cried.  

After a wonderful dinner, we loaded up in the car for children's Mass at the Newman Center.  Trying to get dinner on the table and 2 kids out the door for Mass by 5 is INCREDIBLY difficult I have discovered - particularly since they are hyped up on Christmas and don't particularly want to wear their church outfits.  But I managed with about a bottle of wine - I couldn't waste where my beef tenderloin recipe only called for 1/2 a cup!  The Mass was beautiful, although I doubt Olivia or Lilly saw much of it.  

Afterwards, we headed home to bake cookies for Santa and set out an apple for Rudolph.  Olivia was so funny this year.  She is TERRIFIED of Santa.  So the prospect of him coming in our house was creating quite a bit of anxiety.  I finally had to tell her that I wouldn't let Santa come in the house, but that I would meet him in the driveway with his cookies, milk, and the apple for Rudolph and pick up her presents.  Whew!  She is a little high maintenance!  After watching Santa on the Santa Tracker on my iphone (love that app!) and finding out that Santa was no longer lost in China (thank goodness!), we put the girls to bed.  Jeremy and I have a ritual every Christmas Eve that I make a brie with brown sugar and pecans, Jeremy opens a bottle of wine, and we enjoy brie and wine while watching one of our favorite feel-good movies - Love Actually.  I love that movie - it never gets old!  After the movie we headed to bed but before we went upstairs, we checked out to see if Santa had arrived (he had and was VERY generous!) and then looked out the window to see if the forecasters were correct about a white Christmas...and they were!  I cannot remember a white Christmas ever, so I was so excited.  It was beautiful!  Christmas Eve was a fantastic day!

Frosty the Sugar Cookie Snowman!

This was so much fun and so easy!  I bought the snowman pan at Wal-Mart with an icing kit (although you can make your own or use pre-made icing).  I also bought pre-made sugar cookies and placed them in the pan - when they cooked, they made a snowman shape.  Then Olivia and I iced the cookie (you can tell the icing was Olivia's favorite part) and decorated him with candy!  I may have to go back to Wal-Mart and pick up the gingerbread man - we have found another Christmas tradition!  

Olivia's Little Gym Recital

Olivia had a recital to end her semester at the Little Gym "Funny Bugs" gymnastics class.  To be honest, Jeremy and I were really worried that she would even perform.  Olivia does NOT like to be the center of attention unless it is on her own terms.  I hung a picture she made of Lilly on the refrigerator for Lilly's first birthday and Olivia made me take it down because she didn't want anyone commenting on it.  If I tell her she looks cute before a party, she will tell me she doesn't want anyone at the party to call her cute and ask to take her outfit off.  That is how bad it is.  So Jeremy and I expected to show up at Liv's last class in order to comfort a shy little girl during a recital.  We made sure we didn't make a big deal about the recital beforehand and didn't even tell her we were showing up - but when we did, she REALLY surprised us!  Olivia did so well and performed with the other kids - I was SO incredibly proud of her!  She really loves her gymnastics class at the Little Gym so much, that I have signed her up for a ballet and tap class mixed with gymnastics next semester.  She also attended a camp over the winter break and told me that she had so much fun she didn't want to go home!  We have certainly come a long way from that first class when Olivia stood in the corner and cried!  Lilly loved watching her too, and as you can tell from the pictures, I think I will be enrolling another little girl in a Little Gym class soon!  Enjoy the pictures!

Waiting in anticipation of the recital!

Go Funny Bugs!

Ashley and Lilly enjoying the show!

Ms. Julie helping Olivia on the balance beam!

Lilly getting into the action!

Waiting for the medal ceremony!

Striking a pose with her new shiny medal!

Great job Funny Bugs!

Olivia and her teacher, Miss Kristin!

Lilly can't wait until she gets into the action!