Wednesday, December 29, 2010

2010 Blog Highlights

In January, I discovered how important it is to be completely compliant with my CF team.

In February, Morgan turned six months old. We also took our first family field trip, during which Shylee made an interesting observation that we still laugh about to this day.

March found me contemplating motherhood and what I'll tell Morgan about certain decisions I've made in my life.

April was all about post-baby life: my body after baby and my highest PFT's since before pregnancy.

In May, I wrote about the wonderful mothers in my life.

In June, Morgan got blamed for our terrible sleep habits and Adam got just some of the credit he deserves for being so amazing.

I was involved in a freak accident in July (more of that story can be found here, here and here).

August was a busy month, what with Morgan's first birthday, and a surprise hospitalization followed by home IV therapy. Somewhere in the middle of the stress, I found a new perspective and the month ended well.

In September, I embarrased my doctor when I said just a little too much and attempted to describe what living with a chronic illness is like.

In October, I fell in love with fall and took advantage of the beautiful weather by napping in my car.

November was a time for babies!

December brought about another hospitalization and a lot of time to contemplate life.

Monday, December 27, 2010

It's THAT time again

On Christmas Eve, I could feel a cold coming on. You know the feeling: way in the back of your throat, before it's actually sore you feel a bit of a scratchy, tickly feeling and you just know you're getting sick. I have to admit, I wasn't really surprised. When I saw the green goop coming out of Morgan's nose a few days before, I figured it was only a matter of time before I'd catch whatever was going around. And then when she kissed me and got some of that green goop on my lips, I knew there was no escaping THE COLD.

Christmas morning was fabulous, and I have never had as much fun opening presents as I had watching Morgan tear into hers. As the morning went on, however, I started feeling worse. Much worse. By noon, I was fairly certain I was dying. Aside from the sore throat and runny nose, my body was aching and I was already starting to cough quite a bit. Then my back started hurting. A lot. The pain spread to my stomach and eventually it even worked it's way down to my thighs. It reminded me of... hmmm, what would be a good example? Oh yeah, it reminded me of that one time I spent twenty hours giving birth to a baby.

By this point, I was really worried. I knew it was more than just a cold, but on a weekend -- make that Christmas weekend -- my only option for medical care would be the emergency room. Although I was at that very moment writing my Last Will and Testament, I wasn't entirely sure an ER trip was warranted. So I took some ibuprofen and went to bed. And when I woke up four hours later, it all made sense. Now, I know for a fact that there are some men who read this blog and might be very uncomfortable if I said that I was experiencing my first post-baby period (Hi, Grandpa!) so I'll just say: it turns out I wasn't dying. I just forgot what it's like to be a woman.

And I'm glad I didn't jump the gun on that whole emergency room thing.

Friday, December 24, 2010

Wishing you and yours...

Oh the weather outside is frightful,
But the fire is so delightful!
And since we've no place to go
Let it snow, let it snow, let it snow!

Or, how about:

I oughta say no, no, no!
          Mind if I move in close?
At least I'm gonna say that I tried.
         What's the sense in hurting my pride?
I really can't stay.
         Aaah, but it's cold outside!

I've always enjoyed Christmas music, especially the fun, upbeat kind. In our house, all things Christmas are fair game the day after Thanksgiving -- including holiday music! This drives my husband absolutely crazy, but I like to think it's one of those quirky things that makes him love me even more. (We won't ask him for his honest opinion on that.)

Some of my favorite Christmas memories are centered around holiday music. Like the time my siblings and I all stood in a line - shortest to tallest - in front of my big bedroom window (to watch our reflection, of course) wildly waving our arms up and down to the tune of My Favorite Things. Or the time that my sister and I, after watching our town's Christmas Light Parade, walked arm in arm back to the car and made a lame, but very loud, attempt to sound Swedish (?) while singing Sleigh Ride. "Outside the snow is falling, yah. And friends, yah, they are calling yoooo-hoooo. Yah."

This year, just after Thanksgiving, I was driving when a familiar song came on the radio. Not one of the cheesy, fun songs I'm so fond of, but one that has a special place in my heart nonetheless. As I sang along to Hark the Herald Angels Sing, I was moved by the lyrics more than ever before -- especially by the third verse.

Hail the Heav'n born Prince of Peace,
Hail the Son of Righteousness!

Light and life to all he brings,
Ris'n with healing in his wings.

Mild He lays His glory by,
Born that man no more may die.

Born to raise the sons of earth,
Born to give them second birth.

Hark! The herald angels sing,
"Glory to the newborn King!"

THAT, my friends, is exactly what Christmas means to me. And since I couldn't possibly say it any better than that, I'm just going to leave you with a simple

Merry Christmas!

May you enjoy this season, whatever it means to you.

Light and love,
The Livingstons

Thursday, December 23, 2010

December 2010 Newsletter: 16 months

Dear Morgan,

It's been a crazy month, kiddo. A month that began with me over a hundred miles away in the hospital for two weeks and will end with five (count 'em, five!) family holiday parties within a three day period. It's been so crazy, in fact, that I thought I might not write a letter this month. But then I read through some of what I've written in previous months and realized that there is already so much I've forgotten; little things that would have been gone forever if I hadn't taken the time to write them down. And so, while this may not be the longest or most eloquent letter I've ever written, there are a few things I wanted to be sure to tell you.  

First of all, I think you should know that I missed you terribly while I was away. In the days leading up to my hospitalization I spent a great deal of time just staring at you, memorizing your features once again: your chubby cheeks, your miles long eyelashes, the way your hair curls at the nape of your neck,  the dimple in your left cheek that only appears when you smile just so. The first time I was away from you was when you were three months old, and I remember thinking it was the most difficult thing I'd EVER done. I told myself  that as you got older, being separated from you would get easier but Morgan, I couldn't have been more wrong. It hurt just as much this time as it did the time before and I image that it will always be hard, regardless of your age. You are so very much a part of me, I honestly don't know what to do without you. As much as it hurts, I must say that I consider myself lucky to feel that way. It wouldn't be nearly as painful if I weren't fortunate enough to love someone so entirely. And that, my dear, is a beautiful thing.

Your dad brought you to the hospital on the weekends, and you were both able to stay there with me. You and I slept on the hospital bed, while your dad curled up on the pull-out loveseat. Those nights will forever stick out in my memory. You were exhausted - emotionally and physically - and you couldn't seem to get close enough to me. You'd wrap your arms around me and nuzzle your face deep into my neck and I wasn't allowed to move after that. If I did, you'd cry and hold me tighter. It was only after you had fallen into a deep sleep that I could move into a more comfortable position. At one point during your first visit, I had to go to the bathroom but each time I'd walk out of your view, you would scream and throw yourself onto the floor. I finally took you into the bathroom with me, but you still cried. It wasn't until I pulled your right up onto my lap that you were content. So there we sat, face to face, smiling, peeing and being very much in love.

A big development this month has been the transition to your crib... again. There have been short periods of time here and there when you have slept alone, but for the most part you have spent the nights with your dad and I in our bed. While I was away, you slept in your cousin Ryan's crib and the night I got home you pointed to your crib and excitedly said "Nigh-nigh?". Part of me was heartbroken that you would actually ask to sleep on your own, but another part of me was so proud of you. You've been sleeping in your crib every night since then and, get this, you've even been sleeping in!  As much as I miss you being so close to me at night, I'm happy to know that you are comfortable in your own room.

Morgan, before I finish this, I want to say thank you. Thank you for loving me. Thank you for missing me while I was gone. Thank you for enjoying the snow so much and making me think that maybe, just maybe, it's not so bad after all. Thank you for grabbing my hand, pulling me to the Christmas tree and telling me it's pretty ("priptee"). Thank you for climbing into my lap and falling asleep while I do my treatments. Thank you for adoring Dixie the way you do. Thank you for singing to yourself in your crib before I come get you in the morning. Thank you for laughing so hard when we twirled around the living room singing "Let it Snow" the other night. Most of all, thank you for all the times you've made me look around and think this right here is all I ever wanted in life.

Merry Christmas, angel!


Monday, December 20, 2010


Sometimes I get emails asking if I'm okay -- I haven't updated my blog or posted on Facebook for a while.

Sometimes I get busy.

Sometimes I get tired.

Sometimes, especially after two week long hospitalizations, I just need to spend some quality time with my husband and baby girl.

And so, sometimes, I neglect my blog.

But I am doing very well, thanks for asking. I made it home from the hospital last week, safe and sound. I'm very happy to be home and I hope to update soon. 

Monday, December 13, 2010

Whatta view!

I can't say that I've been hating the view from my room.

Actually, there's not a lot I can complain about right now. I've been treated like royalty, I've met some new friends, I've had some amazing workouts and I'm feeling better than I have in months. Plus, they let me eat all my meals in bed!

Even still, I'm glad this stay is coming to an end because as cool as the view from my room has been, there's one at home that I enjoy even more.

Maybe I am sick

In order to cure some of my boredom here in the hospital, I've been watching twelve consecutive hours of America's Next Top Model walking around a lot. To make the most of those walks, I've been opting to take the stairs instead of an elevator. Apparently, that's pretty unusual. Earlier today, my nurse and I had a conversation that went a little something like this:

"Are you feeling okay?"

"Yeah, I'm fine. I just took the stairs so I'm a little out of breath."

"The stairs?"


"You know there are elevators, right?"


"But you choose to take the stairs?"

"Uh, yeah."

"You are a sick individual, honey... and it's got nothing to do with your lungs."

Thursday, December 9, 2010

Thankful Thursday (hospital edition)

I recently did a post about things I am thankful for, but in this particular setting (the hospital) I have become more acutely aware of my gratitude for some things I failed to mention in that post, so here goes... Thankful Thursday, hospital style.

1) I am thankful for the continuing advances in medicine and technology. When my oldest sister was diagnosed, CF was a "childhood disease". Meaning that people who had it just weren't expected to live past childhood, period. Now, the average life expectancy of someone with CF is 37 years. I currently have a neighbor down the hall who is in her late 50's. With all the treatments and medicine available, and with so many awesome people dedicated to researching and finding a cure, that number will just keep increasing.

2) I'm thankful that I have insurance to pay for the things I mentioned above. When $6,000 of medicine (for one month!) comes down to about $60 in copays, I really can't complain too much.

3) I'm thankful for the people who have made a career of helping others: doctors, nurses, surgeons,  respiratory therapists, etc. These people are nothing short of AMAZING!

4) I'm thankful that I've had especially great nurses and aides this stay. They have been competent, friendly, kind, and the bet I have with one of them about my PFT's is really motivating me to kick some booty in rehab.

5) That's another thing I'm thankful for -- rehab. Over the past several months, I've been limited on what physical activites I could participate in because of my achilles tendon injury. Well, it's finally healed enough that I can get a decent workout again, which is awesome! I've been alternating between a brisk walk on the treadmill (1.7 miles yesterday) or about 30 minutes on the NuStep. It's been great for my lungs and it's helping rebuild muscle I lost due to the injury.

6) I'm thankful to have not just one great doctor, but an entire team of them caring for me through this stay.

7) I'm thankful for new friends and surprise visitors. Because my family is a two (or more) hour drive away, I don't usually get a lot of visitors when I'm inpatient. This time around, however, some friends of my sister's who live here in Salt Lake have been stopping by with their two adorable little boys to keep me company. I thought it might be a little awkward the first time they came, since I don't really know them, but it wasn't awkward at all. I feel like I've known them forever, and it's been so nice to have visitors! (Thanks, Holly and Evan, for keeping me sane.) My cousin also came to visit recently and, although she hadn't planned on it, she ended up staying the night with me. It was really fun to catch up and get some much needed Niki-Time. I love me some Niki!

8) In the hospital, more than ever, I'm thankful for showers. Enough said.

9) This one might sound a little strange considering the fact that I've spent a great deal of the past week in a hospital bed, but I am so thankful for my health. Things could be A LOT worse than they are, and I am very blessed to be as healthy as I am.

What are you thankful for?

Monday, December 6, 2010

I came here to live

Please ignore the freakish way my neck is craned in this picture, and get a load a' her precious baby blues!

This past weekend was great! As far as days spent in the hospital go, the past few have been some of the best I've ever had (ranking right up there with Tae-Bo parties and avocado masks at Primary Children's).

Adam and Morgan spent Saturday and part of Sunday up here with me. In order to keep Morgan entertained, we walked (and walked and walked) around the hospital. Morgan loved the tunnel that leads from the U of U to the Moran Eye Center/Primary Children's Medical Center, and she simply couldn't get enough of the Christmas tree that stands in the lobby on the main floor.

Getting out of my room was refreshing. Adam's arms were comforting. But the best part of their stay was when Morgan wrapped her arms around my neck, snuggled into me, and we fell asleep together; Mama and baby, chest to chest, breathing each other's breath. For a minute, it felt like home.

The other day, I was talking with a social worker and she said something that really resonated with me. It's a concept I've thought about time and time again, but I really liked the way she worded it. She said that, in her experience, she's noticed that most CF patients fall into one of two categories: those who are living their lives and just happen to have CF, and those who have CF and just happen to be alive. Very simply put, but still... pretty deep.

The idea of dying is in the back of my mind, somewhere, all the time. I mean, I lost a sister to the same disease that I'm fighting -- obviously I have always known it has the potential to claim my life as well. But, I remember clearly, the first time that thought held any gravity -- the first time it became REAL --  was when I fell in love with Adam. I knew I wanted to marry him, but I seriously questioned the fairness of letting him love me if I was going to die before we had a chance to make a life together. How could I put him through that?

Another time the thought of death seemed palpable was when I was in the IMCU last year, unable to walk or even get out of bed on my own, struggling to breathe, wondering if I'd wake up the next morning. I remember thinking is my daughter going to be left motherless? How will my husband cope with the loss of his wife and the responsibility of caring for our three-month-old on his own? What have I done to them? 


I recently learned of the passing of a friend of mine. She was 22 and had cystic fibrosis. We read each other's blogs, became friends on Facebook and regularly exchanged emails. One of the last emails she sent me detailed how well she was doing; she was excited to share with me that she and her fiance had begun talking about having children. She was completely fine, and the next thing I knew she was gone. I was shocked, angry, resentful; I cursed this disease that is so unrelenting. It wasn't until the next day that I learned that she had died, not from CF, but in a terrible car accident. A car accident!

There are just no guarantees; life is so fragile. I have a terminal illness, yes. I may lose my fight, it's true. There is a very real possibility that I may not have as many years as I'd like because of this disease. But, I could also be hit by a bus tomorrow. I can't imagine letting opportunities pass by, withholding my love, or selling myself short because I may not live to see tomorrow, when in reality, nobody is guaranteed a tomorrow. I mean, if anything, isn't the possibility of a short life even more reason to seize the moment... to find what you're passionate about... to really live?  


After a tearful goodbye, I watched Adam and Morgan disappear into the parking garage. As I began the walk back to my room, I stopped to take another look at the Christmas tree Morgan was so enamored with. As I stared at my reflection in an oversized glass ornament, I thought again of what a wonderful gift this life is. If I'd let my fears about death and this disease govern my decisions, I'd have never experienced just how beautiful it can be. If I had been to afraid to live, I'd have already lost my fight. 


 I choose to LIVE MY LIFE, I just happen to have CF. What about you?

Friday, December 3, 2010

The good and the bad

The good news is: I've been sleeping incredibly well since I got here; better than I've ever slept in a hospital. The bad news is: I slept right through rehab yesterday.

The good news is: The pseudomonas that has made itself at home in my lungs is still susceptible to more meds than it's resistant to. The bad news is: I'm now culturing MRSA as well.

The good news is: Adam is bringing Morgan up tomorrow, and they'll both be staying the night with me! The bad news is: I'm not sure how easy it will be to keep a 16 month old entertained within my hospital room.

The good news is: The phlebotomists have been absolutely incredible this stay. I literally slept right through a blood draw the other night. The bad news is: My PICC placement was a pretty traumatic experience, and my entire upper arm is still extremely sore.

The good news is: The antibiotics haven't completely squashed my appetite as they so often do. The bad news is: Even still, I've lost 2 pounds since Wednesday.

The good news is: My nurse was kind enough to find a razor for me (since I forgot mine at home and didn't want to spend $6.00 on one from the gift shop). The bad news is: The razor burn it gave me is making me wish I'd just gone au natural.

Wednesday, December 1, 2010

On this, that, and meeting a legend

The Hole, The Joint, The Clink (one of my personal favorites)... call it what you like, I'm in it.

It's no surprise as I've been feeling increasingly ICK! over the past several weeks; there have been some good days, but mostly just okay days, with a handful of downright nasty days thrown in there, too. It's not a dire situation, but it's definitely time to do something. I'm trying this new thing (for me) called preventative care. As in, DON'T wait until you're on your death bed to take care of things. Apparently, it's all the rage. I'll let you know how it works out.

Lung function is down. A little more than I expected it to be, even. But I'm still feeling okay; optimistic that we caught this in time!

I'm not going to lie, the next two weeks aren't going to be fun, but they are going to be productive. The plan? Well, other than nonstop partying for fourteen days, of course, I'll be on continuous IV antibiotics along with an oral antibiotic. I'll do respiratory therapy four times a day and glorified exercise pulmonary rehab once a day. I think that's a pretty normal hospital routine for most CFers, except I have a secret weapon in my arsenal that few others do:

Okay, okay, so I don't actually think that pudding and coke hold any kind of special healing powers, but I got into my room late enough that I didn't get a dinner tray. By the time we figured out I wasn't going to get one, the cafeteria was all but closed, so this is what I ended up having for dinner. Hoping for better luck tomorrow.

I didn't get a PICC today, either. I'm told it will happen sometime tomorrow. Also on the schedule: a sinus CT scan. I warned you about all the partying, didn't I?

I'm going to keep this short tonight. I'm hoping to get at least some sleep before someone comes in to poke me with a needle again (today's count so far: 3). But one more thing before I go: you know how they say that meeting a legend is disappointing? Something like the person is never as cool as you make them out to be in your mind? Well, that's poppycock, I say! Why? Because a) it's just a neat thing to say. Poppycock! Go ahead and try it. I'll wait....

...See. Fun, huh?

And b) I had the pleasure of briefly meeting the gorgeous Somer Love tonight and she is EVERY BIT as adorable as I'd always imagined she'd be!

Tuesday, November 30, 2010


I feel like I haven't written anything of real substance for... well, a while. But tomorrow I'm headed for what will likely turn into a full two week hospital stay, during which I will have A LOT of free time on my hands. You know what that means? Lots and lots of blogging about completely random things. Lucky you.

I have a few posts rolling around in my head; I've even started two of them. I promise I'll update as soon as possible. I also promise that I'll try not to complain too much, and that at least one of those posts will be about something OTHER than how much I miss my kid.

Saturday, November 27, 2010

'Tis the Season

Is there anything better than a toddler's fascination the first time she sees Christmas lights? Maybe the way she carries the nutcrackers around the house, calling them her babies.

Thursday, November 25, 2010

30 Day of Thanks

nDay 1:  Today I'm thankful for understanding coworkers.

Day 2:  Today I am thankful for memories. My cousin and I shared some of our memories of my sister, Shannan, who passed away when I was 6, and I've felt her presence today more than I have in a long time.

Day 3: I am thankful that the recovery from my severed achilles tendon (and the surgery to repair that tendon) has been relatively speedy and complication-free. Here's to continued improvement!

Day 4: I'm thankful that I was able to come home from work and hug my daughter. Not everyone in our little community was able to do that today.  

Day 5: Today I'm thankful for random compliments from strangers. A few sweet, simple words can really go a long way.

Day 6: I am SO INCREDIBLY THANKFUL to be a mom! I could list this one every single day for the rest of my life, and it wouldn't even begin to convey my gratitude.

Day 7: Today I'm thankful to have a husband who does his own laundry.

Day 8: Today I'm thankful that Mother Nature allowed us to have a few more absolutely gorgeous days of fall before we have to head into winter. That being said: Goodbye, Sunshine. See you in six months!  

Day 9: Today I'm thankful for friends. Over the past few years they have become fewer and farther between, but to those who have stuck around, thank you. You guys are amazing!
Day 10: Today I'm thankful to know that there are still decent people in the world; people who are willing to step up and do right by someone else.

Day 11: I'm thankful that I was taught to always be accepting and respectful of others. Some of the most amazing people I've ever met have walked a very different path than my own, and some of the strongest life lessons have come from those with different beliefs.

Day 12: I am incredibly thankful for my CF family. The online CF community is one of the most caring, supportive and encouraging groups of people I have ever had the pleasure of knowing.

Day 13: Today, I'm thankful for restful weekends.
Day 14: I'm thankful to have a husband who occasionally lets me sleep in while he feeds the girls breakfast and gets them ready for the day.

Day 15: I'm thankful that Adam and I live near both our extended families. They are a great support system and I love knowing that my girls will grow up close to their cousins like I did.  

Day 16: I'm thankful to have step-parents that I TRULY love. I'm also grateful that all the steps and exes in our family get along so well. I have learned by their example that a "broken family" is what you make of it... and ours is pretty amazing!

Day 17: Today I'm thankful to have a husband who can always make me laugh... even when I'm upset with him. (Although sometimes it drives me CRAZY when I'm trying so hard to be mad and he's sitting there just-a-crackin' me up.)

Day 18: Although it can be very challenging at times, I'm so thankful to be a stepmom. Morgan may have made me a momma, but it's Shylee who broke me in.

Day 19: I'm thankful for our jobs. They have kept food on the table, clothes on our back and a roof over our heads, and that makes us more fortunate than a lot of people out there. Some of the most meaningful relationships in my life are the ones I have with my coworkers.

Day 20: Today I'm thankful that my dad taught me how to glue a cake back together with icing. Shylee's cake was about 85% frosting, but it was still pretty yummy! Hey, I've never claimed to be good at this whole "baking" thing.

Day 21: I'm thankful to have a husband who makes me do my airway clearance and breathing treatments, even when I beg him to let me skip them "just this once".

Day 22: I'm thankful that both Adam and I are able to get health insurance through our employers.

Day 23: I'm thankful beyond words that the babysitter's house is not only conveniently close to work, but also a place where I know Morgan will be well taken care of and, most importantly, where she is loved like part of the family. Thank you for all that you do for us, Mindy!

Day 24: Today I'm thankful that it's a short work week. Bring on the long weekend, and BRING ON THE TURKEY!

Day 25: I'm thankful to be blessed with wonderful parents who have loved me unconditionally, taught me so much, and are awesome grandparents.


I first thought that as the month progressed, I may have a difficult time finding things to be grateful for each day, but I found that the real problem was trying to limit myself to listing just one thing per day. I've been humbled by this experience, and I've realized once again how rich with blessings my life is.

I will continue 30 Days of Thanks on Facebook through the end of the month. I just thought that today was a fitting day to post this. Happy Thanksgiving, everyone!

Tuesday, November 23, 2010

My first blog award

I'm very honored, although I couldn't help but notice that they listed my blog as "My Life IS a Livingston" which reminds me of  the countless times throughout my school years that my name was spelled "Jennie Carmondy".

But totally cool, nonetheless.


Click on the award to see the entire list of Top CF Blogs.

Monday, November 22, 2010

They don't call it Black Friday for nothin'

Last week, Adam told me he thinks we should do some Christmas shopping the day after Thanksgiving.

If you know Adam, I'm sure you'll understand why my reaction to this was "Who are you, and what have you done with my husband?" If you don't know him, let me just tell you that this is more than a little out of character for him.

This brilliant idea was coming from the man who avoids going to Wal Mart on weekends because the lines are a bit longer than usual; whose blood pressure skyrockets when people stand just a little too close to him; who, no matter how much he wants to see a movie, will wait until it is released on DVD just so he can avoid listening to people in the movie theater crunching on popcorn. The People Hater wants to go to the biggest, most crowded, most people-trampling-craptastic sale of the year.

"I don't think you're comprehending just how many people there will be, honey. You're going to HATE it," I told him.

"It'll be okay," he said.

"You realize that I'm going to be totally useless, right? I'm not going to shove people out of the way, or punch someone in the face to get a toy. In fact, I'll probably ride in the cart the whole time just to be sure I'm not trampled to death."

"That's fine."

"And as soon as you start complaining that it's too crowded or that I'm not helping enough, I'm going to bring up this conversation, then make fun of you on my blog. You are aware of that, right?"


So, I guess we're going shopping on Friday. If you are insane hitting the big sales as well, please be advised that if you come across an angry man mumbling profanities under his breath while his wife shouts "REMEMBER THAT CONVERSATION?" you should not, under any circumstances, approach them.

Chances are, that man will be packing heat.

Saturday, November 20, 2010

Take: fourteen

Take: one

Take: two

Take: three

My personal favorite is #3, wherein I am squeezing Shylee's leg telling her to please just look at the camera, at the precise moment she is smacking Adam in the face...

...which pretty much sums up every experience we've ever had with family pictures.

Wednesday, November 17, 2010

But I might stick a poison apple in your stocking

Shylee: Are we going to have a Christmas tree this year?

Me: Of course we are. Why do you ask?

Shylee: I just thought you might not let us have one.

It's interesting to learn that you're perceived as the kind of person who might blacklist Christmas trees. My mind raced, trying to pinpoint the moment I had said or done something to make her think that. I was sure I'd never given her that impression; I love Christmas!

Then it hit me -- I'm the EVIL stepmother! I'm supposed to ban Christmas trees and kick puppies and things of that sort. Sometimes I have to be reminded.

Tuesday, November 16, 2010

Dear Hospital,

As much as I hate to say it, I think it's about time that you and I had a little rendezvous. I've got some weird stuff going on that I could really use your help with.

I'm definitely not happy about it, but I'm proud to say that I won't have to be bound, gagged and physically carried into a bed this time. (Look at me... I must be growing up.) But please don't judge me too harshly if I complain just a little - I know I'm luckier than a lot of people - it's just that I'm not quite used to these changes in my health; I'm not used to needing to visit you so often. I'm sure that as time goes on, you and I will begin spending more time together, and I really think I'll learn to be okay with that. I just need a little more time.

I've been making preparations this time around; I don't want to be caught off guard like I have in the past. I've made arrangements with work and a babysitter, and I'm coming to clinic in two weeks with my bags packed, entirely prepared to stay for a while. If by some miracle I'm feeling better by then, or if my doctor has an alternative plan, I promise that I won't complain even once about all this planning being in vain. (See? Grown up.) I'll just consider myself a lucky girl and be grateful that I get to go home to my family.

But I must warn you that if that is the case and I don't have to be admitted, as I walk out the doors, bags in hand, I may not be able to restrain myself from doing a little victory dance and telling you to go ahead and SUCK IT!

With resentment love,
Your (perhaps not totally grown up) friend,

P.S. Before I come, can you please warn the nursing staff that I will cry EVERY TIME they ask about my baby, and also tell that guy from Respiratory that I have absolutely no desire to talk about his love for Jack Johnson during every... single... one... of my evening treatments. Thanks.  

Monday, November 15, 2010

On expectations and being "normal"

In the past year or so, as I've become more involved in the CF community, and as my own health has become increasingly harder to manage, I've noticed a certain concept creeping quite regularly into my discussions with other CFers -- the strong desire we have to lead a normal life. Growing up, I had a picture in my mind of what a normal life should look like, and over the years I've done my best to make my own life resemble that picture.

Last year I became very sick. At a particularly low point, I found myself in a hospital bed, barely able to breathe, in severe pain, absolutely terrified and feeling very alone. I allowed myself to cry for a long time that day; I cried because I was finally beginning to come to terms with the reality of this disease, because I was emotionally and physically exhausted, because my family couldn't be there with me when I so needed them, and also because I felt as if I were being robbed of the normal life I'd always wanted.

From where I sat, the portrait of my current life and that of the normal life I'd envisioned looked NOTHING alike; where there were supposed to be bright splashes of color, there were gray shadows and instead of beautiful scenery, there was a mess of odd, senseless shapes. I felt discouraged and lost, and at the time I was furious with CF for stealing my chance at normality.

In the weeks following that hospitalization, I slowly started feeling better and as my energy returned, so did my morale. I began feeling excited and optimistic about the future again. Before long I was even feeling, dare I say, normal again. And that's when I started thinking, what is normal, anyway? Who or what is the standard that we are supposed to measure up to? Because you and I are different, does that mean one of us is not normal? Do our personal challenges make us abnormal? What exactly constitutes a normal life?

When I hear other people with CF say things like "I just wish I were normal", my heart hurts because I truly feel for them and can relate to what they are going through, but I also feel grateful that I've moved beyond that place. I no longer wish to be normal, or mourn for the normal life I'll never have. I have come to realize that normal doesn't exist.

If it's not CF that threatens someones normality, it may be depression, down syndrome, spina bifida, mental illness or one of hundreds (if not thousands) of other diseases. Besides handicaps and illnesses there are people dealing with poverty, violence, abuse, neglect, etc. The physical and emotional scars caused by any one of these things could just as easily steal someones chance at a normal life. Some trials may be life-long and noticeable, like CF, while others remain completely hidden to everyone but their owner. The bottom line is that NO ONE is immune to the possibility of facing a major, often times heartbreaking life disruption. I firmly believe that everyone, no matter their situation, will at some point experience their own personal hell that will make them reconsider their idea of normal.

CF (and all that it entails) is just a part of me. It may seem foreign to someone else, but it's all become very normal to me. This is my life -- my normal life. It may not match your description of normal, or anyone else's for that matter, but it's the only normal I'll ever know.

I still see those portraits in my mind: real life vs. the life I'd imagined. It wasn't until I reached a very low point in my life that I really examined those pictures, and at the time I was disheartened by their differences. In time, however, I began looking at those pictures in a new, more forgiving light. The more I looked, the more I began to see some very significant similarities between the two. All the important things are still there, I just have to take a step back every now and then to see them. Sure, there may be a little more gray than I planned on, but it makes the colors seem that much more vibrant in contrast.

This life of mine is very different from the normal one I once strived for, that's true, but I can guarantee you that it's JUST AS BEAUTIFUL.  

Friday, November 12, 2010

Even though he has two first names

I can finally share with you something that, until this point, I felt like I really couldn't say much about - for legal reasons. (Does that sound cool, or what?) But first, I think I need to back up a bit.

July 25, 2010
  • We purchase a lawnmower at Home Depot
  • Home Depot employee fails to deactivate security device on said lawnmower 
  • Ear-splitting alarm sounds as we prepare to exit the store
  • I'm startled by the sound and pause momentarily
  • Adam continues walking and runs into the back of my legs with mower
  • There is pain... so much pain (and possibly some profanity)
  • We rush to the nearest emergency room and find that my achilles tendon has been completely severed in two  

A couple days after the accident, I got a call from a man named Tom Scott at Home Depot's corporate office. He explained that an investigation was being conducted in order to clear Home Depot of any liability. He also said that TORO, the manufacturer of the lawn mower, would be getting in contact with me simply because it was their product involved in the accident.

I remember joking with Adam about the saying "Never trust a man with two first names". I was hoping that Tom Scott would prove to be an exception.

In August, two representatives from TORO and a gentleman who worked for Tom Scott met with me at my house. TORO wanted to inspect the mower to be sure there was no product defect, and Home Depot wanted a representative there to speak directly with myself and TORO about the incident.

They obviously knew I was injured -- that's why they were there in the first place -- but I don't think they expected to see me hobbling around on crutches, with a cast up to my knee, a very noticeable PICC line in my arm and tubing trailing into the fanny pack that held my IV pump (as I was currently doing home IV therapy for a lung infection). Their stares said more than their words could, had they actually been able to say anything. All three of them stood there looking at me, speechless, until I finally broke the silence by extending my hand and introducing myself. (And if you know me, you know how much I enjoyed their discomfort in that moment.)

As I said, they were there to inspect the lawnmower and hear firsthand our account of the accident. It went without saying that they were also there to determine whether or not I was the type of person who was going to sue their pants off. In the next twenty minutes there were of a lot of questions asked, hundreds of pictures taken (of me, of my cast, of the lawnmower), some blame shifting between the two companies and an impressive reenactment of the accident, although the TORO employee who portrayed me didn't quite have the same panache I do.

By the end of the meeting it was pretty clear that if one of companies were to be held accountable, it would be Home Depot. There was no product defect or malfunction, so TORO had no liability whatsoever. They paid for two employees to fly from Minnesota to Salt Lake City, rent a car and drive halfway across the state for our meeting, get a couple hotel rooms for the night (I don't think the fifty-something woman and thirty-something man shared a room, although I could be wrong), then drive back to Salt Lake and fly to Minnesota the next day, plus their meals along the way, only to find that they really had no reason to send anyone out in the first place. Perhaps we should have discussed this beforehand, TORO. I'm sure we could have come to some sort of agreement in which you could have just given me the money you spent on that little business trip and in return, I'd have pinky-promised not to sue you. Heck, I would have settled for what you spent on just the plane tickets.

Home Depot was a little concerned that we would go after them since it was their employee who failed to deactivate the security device on the lawnmower (which is what caused the alarm to sound, startling me). That concern escalated when the TORO employee explained that the company generally places one security device on the handle of the mower, but that Home Depot had specifically requested that another device be placed on the deck of their mowers for added security. Basically he was saying hey, YOU guys asked for the additional security device, then YOU were the morons who failed to deactivate it. Good luck with your lawsuit, buddy.

The Home Depot guy didn't say too much after that, and I got the feeling he wasn't really looking forward to reporting to Mr. Tom Scott back at HD corporate headquarters.

From the very beginning, we were urged to hire an attorney. Literally one of the first things out of the doctor's mouth as he began examining my injury was "I certainly hope Home Depot is paying for this". And, in theory, it sounded nice: get paid hundreds of thousands of dollars, quit our jobs and live like kings at the expense of Home Depot. But in reality, I think a big problem with this society is how sue-happy we are. So many people think that everything is someone else's fault, and that they should pay big time for it. This was an ACCIDENT! I didn't (and still don't) feel like Home Depot owed me an exorbitant amount of money. Of course we were hoping that they would offer to help cover the medical bills, and if they wanted to, say... give us the lawnmower for free, we certainly wouldn't turn them down. But neither Adam or I felt that it was at all necessary to file a lawsuit. We were just going to be decent and honest and hope that Tom Scott would do the same.

Over the next few months I was in regular contact with Mr. Scott. He would often inquire about my recovery and asked that I forward him any documentation of out-of-pocket expenses incurred in this whole process. He also requested a letter from my employer verifying lost wages from any work I had to miss due to my injury, including any time missed for doctor's appointments. At one point, I received an email from him which said that Home Depot did, in fact, have some liability issues in my case and that after I was discharged from medical care (related specifically to that injury) he would like to discuss a settlement figure.

Well my friends, the paperwork has been signed and I can tell you that, although it was not a large settlement by any means, it's enough that the lawnmower will be paid for, all of my out-of-pocket medical expenses will be taken care of, and we'll even have a little bit leftover for bills or Christmas. And we were able to do it all without the waiting, frustration and added expense that would have been involved if we had hired a lawyer. I feel like we were treated respectfully through the whole thing and that Home Depot definitely did their part in making sure I was taken care of. And no, I'm not being paid to say that.

I'm starting to believe that saying may not be of much consequence after all. I think that there are men with two first names who can, in fact, be trusted. I mean, Tom Scott turned out to be an alright guy. And what about Benjamin Franklin or Clark Kent?

And c'mon, Clive Owen? I'd trust him with my everything.

Tuesday, November 9, 2010

November 2010 Newsletter: 15 months

Dear Morgan,

Lately when people have asked me how old you are I've told them, "She's 15 months... going on 15 years." Just the other night we dropped you off with your Grandma Candy for a few hours so your dad and I could have some much needed alone time (something you'll understand when you're older... much, much older) and when we came to pick you up later that evening, all she could say about the experience was, "She certainly has a mind of her own, doesn't she?"

That you do, kiddo. THAT YOU DO.

But it's not as if this is new information. In fact, I knew it before you were even born. Shortly after discovering that I was carrying you, I began having complications with the pregnancy. There was a time very early on that I thought I'd lost you. In fact, everyone did, including my doctor and the ER nurse I spoke with on the phone. But during an ultrasound the next morning, I looked up at the monitor and saw your little heart just beat-beat-beating away and that's when I knew: you were strong, you were a fighter. It was only the first of many pregnancy scares, but after that experience, each discomforting moment was accompanied by a feeling of peace. I could feel your strength already, and even though the things we went through were scary, deep down I knew that you were going to be fine.

Sometimes I curse your willpower, as it makes my life considerably more difficult. I imagine my stress level would decrease significantly if I had a child who would listen to me, simply because I said so. But that's not you, my love. Once you get an idea into your head, there's no changing your mind. You are determined and stubborn and even downright defiant, at times. Your ability to throw tantrums is incredible, really. If it weren't so darn frustrating, it'd be impressive. I think there have actually been a few times that your voice has reached frequencies undetectable by human ears. I see these tendencies now and it makes me fearful about the future, but I try not to think about it too much, because the few times I've let my mind wander and imagined you as a teenager I've either ended up in tears, or involuntary, full-body convulsions.

In other news: sometime in the past month, you discovered my belly button. The BEEP! sound I made when you pushed it resulted in hysterical laughter, and now you have a new favorite game. While you definitely prefer to beep someone's "button", if your playmate is not a willing participant in your game (your dad thinks it's weird when you stick your finger in his belly button), another body part will do just fine. Everything in the house beeps now. The couch beeps. The dog beeps. Your food beeps before it enters your mouth. There's no end to the beeping! One morning, I heard a high-pitched BEEP! BEEP! BEEP! coming from the living room and walked in to find you repeatedly pushing your own belly button and giggling.

Your dad and I have recently started playing a game of our own where we say a word and ask you to repeat it. It usually goes something like this:

"Morgan, say: hi."
"Say: night-night."
"Say: dog."
"Di-dee." (All dogs are Dixie)
"Say: ball."
"No, Morgan, say: ball."

That's when we know our game is over.

We have entered the phase of your life (at least I hope it's just a
phase) where trying to put a diaper on you is like trying to mud wrestle a hyena: strenuous, messy, and one of us usually walks away limping. As I've mentioned before, you LOVE to be naked. And I may be crazy, but everything you do seems to be even more hilarious when you do it in the nude. For this reason, on the days that you win our little wrestling matches, we allow you to run around naked for a few minutes. Sort of a naked, victory dance, I suppose. The day you pooped on the carpet was the day your dad said he was drawing the line - your naked days were OVER! I told him that was fine as long as HE was going to be the one who put your diaper back on, then added, "You've recently had a tetanus shot, right?"

You were running around naked two hours later.

We usually make you wear clothes, however. In fact, you've never gone out in public without an essential article of clothing like pants or a shirt. I will admit to the time I became THAT MOM and took you into Wal Mart barefoot and actually let you get out of the cart. And walk. Barefoot. In the store. My excuse? I'd just spend the past hour trying to get your diaper on. At least your bum was covered up.

Morgan, your personality comes out more and more each day, and I simply can't get enough of it. I love your energy, your affection, your enthusiasm for life, your infectious laugh, your goofy smile, and I have to admit, I even love your stubbornness. Although it makes my life challenging at times, I'm so very glad it's a part of you. It may get you into trouble at times, it may lead to some unnecessary hardships in your life, and it may drive the people around you crazy, but it will also be the fuel that keeps you going when you might otherwise give up; it will give you the motivation to help others and the the strength to stand up for yourself; it will be the reason you'll fight so hard for what you believe in, and once you learn to use it for the right reasons, in the proper situations, it will serve you well.


(Someone who's been known to be just a bit stubborn herself)


Wednesday, November 3, 2010


I'm surrounded by babies!

The almost daily "We're expecting!" or "It's a boy!" announcements I read on my Facebook feed, the very pregnant women I see waddling walking though the grocery store, my sister's recent adoption of sweet Baby Miles, one friend's impending due date, another friend's plans to try to conceive -- all of these things are making me feel like I'm being bombarded by babies!

And the more I see and hear about these babies, the more I find myself thinking... I want another one.

Now, let me explain: I don't want one now, or even in the foreseeable future. Between that sassy soon-to-be-five-year-old and that unyielding catastrophic force also known as my toddler, my hands are already full. Sometimes, a little too full (you may recall the paint incident).

But, maybe someday...

After I had Morgan (and became very, very sick) Adam and I decided that we wouldn't have any more children. Initially, I was okay with that decision. It just didn't make sense to put myself at risk for another serious health scare, and the progressive nature of CF must also be taken into account. Even if I were healthy enough to sustain another pregnancy, would I be healthy enough to care for another child down the road? And besides, we are so incredibly blessed to have had Morgan in the first place! We should just be grateful for that and call it good, right?

But as time went on, I began to realize that I wasn't okay with that decision at all.

I was unsure at the time what was causing such conflicting feelings.  Was it just the mother in me hating the thought of never holding another fresh-from-the-womb newborn to my chest? Was I upset about seeing my plans for a natural, peaceful second birth experience going out the window? Did I feel as if I'd somehow be letting Morgan down if I couldn't give her siblings? Was I disappointed that Adam would never get the boy he wanted? Or did it just feel so wrong because it was, in fact, the wrong decision for us?

I still don't have all the answers to those questions. But, as I began to express those feelings and concerns to Adam, he admitted that he also felt unsettled about it. Eventually, we came to the agreement that we do want another baby. (It feels good to say it out loud.)

So, now what? Will we try to have another, naturally? Would I even be able to get pregnant a second time? Would we consider adoption? Honestly, we have no idea. There are far too many unknowns at this point to make a plan. Right now we are simply trying to get my health to a more stable point and focus on loving the children that we do have. The details will work themselves out over time. I don't need another baby, or even a plan, just yet.

The HOPE of having another someday is enough to keep this mama happy....

...for now. 

Monday, November 1, 2010

A pretty safe bet

My coworkers and I often bring similar foods to work, which means that after a few days pass we aren't sure whose food is whose.

Usually, just to be safe, we ask each other things like, "Is this my yogurt or yours?"

"Did you bring Pop Tarts this week?"

"Are those my moldy leftovers?"

I don't remember exactly when I brought it, but I think it's safe to say that the can of Ensure I found in the fridge today didn't belong to any of my coworkers.


Shylee, our little princess/fairy/butterfly, depending on who was asking

I don't know about you, but we took advantage of Halloween falling on a Sunday this year and spread our activities through the entire weekend.

My office is pretty fond of any holiday, but Halloween is our shared favorite, so we dressed up on Friday even though it wasn't technically Halloween.

Later that night, we had a family party at my dad's house, thanks mostly to the planning of my brother and his wife. The kids played a few games, danced, and painted pumpkins. There was fun music, great company and lots of yummy food. Thanks Tommy and Megan, we really enjoyed it!

Pin the tail on the cat

Morgan loves her cousin

Grandma Candy, my sweet stepmom

We really wanted to get Adam up there, but didn't think Tommy would be able to hold him as easily

On Saturday, we braved the stormy weather and took the girls trick-or-treating (our town held a Trunk-or-Treat, where cars line up and hand candy out of their trunks) then we came home, bundled up, and watched The Nightmare Before Christmas, which has kind of become a tradition for us. Then, after the little ones were asleep, a few friends showed up unexpectedly and we had a great time visitng until way too late/early the next morning.

I hope you all had a happy Halloween, too!