Tuesday, August 30, 2011

And some days are very, very, very, very long

"The days are long, but the years are short."

I have to continually remind myself of this on days like today.


At Morgan's two-year-old check up last week, the doctor (and both nurses) commented on what a spirited child I have. Well that's a gentle way of putting it, but yes, she is rather "spirited".

Later in the visit when we were discussing milestones, some that Morgan has already reached and others she should be reaching in the near future, the doctor mentioned something about having to be extra careful when toddlers learn to open doors. Oh, the horror!

"It's customary to cut their arms off at that point, right?" I asked.

I was kidding. Mostly.


Earlier this evening:

"Morgan, please eat your dinner."


"Would you rather have macaroni and cheese?"


"Are you finished eating then?"


"What would you like to do?"

"BE NICE, Mama!!!!" (Followed by hysterical crying and throwing her body on the floor.)

Not that we ever doubted it, but she is most definitely a girl.

Monday, August 29, 2011

It kills me to admit it, but he was right

It's a well known fact among the people who know me that I'm a total homebody. I love being home so basically if you want to hang out, you can come watch TV with me after I put the kids to bed. As long as you don't mind stepping over and/or around things because, as previously mentioned, my house is usually a disaster.

Aren't I awesome? Don't you wish you were my real-life friend?

It's not that I hate going out, it's just that first and foremost I'm a mom. And I'm totally okay with that. I've had to spend far too many nights away from Morgan while I'm in the hospital, so I have a really hard time choosing to spend more time apart. Adam is always trying to convince me that we need to have some "alone time"... whatever that means. I'd be ashamed to admit how often he's tried to find a babysitter so he can take me on a date, only to have me insist that we should rent a movie and watch it in our pajamas instead.  

This past weekend, after a lot of planning and convincing on Adam's part (and maybe just a few tears on mine) my sister-in-law took the girls and we had the entire night completely to ourselves. You may think you know what we did with our free time ("Giggity!") but truth be told, of all the things we could have done, what I wanted to do most was go to the County Fair.

The first summer that Adam and I lived together, he took me to the fair and we spent an entire night eating greasy fair food, wandering through the booths and riding the Zipper and Tilt-a-Whirl until neither of us could take it anymore. We were young and drunk in love, and it was a total blast! I wanted another night like that but with less vomiting, which means that I decided not to load up on vodka  funnel cake before hopping on the rides this time.

Our little fair is nothing to boast about. In fact, the picture above pretty much captures the entirety of the event. We only rode two rides, both of which were a little bit lame; one of the Carnies had the audacity to ask if I was pregnant before letting me on the ferris wheel; we paid an obscene amount of money for a bottle of water and my churro was frozen inside.

But Adam was right. This "alone time" crap he's always talking about is actually pretty amazing! In fact, I think that was the best churro I've ever eaten.

Sunday, August 21, 2011

Now that I think of it, has anyone seen Dixie?

Confession: my house is a total deee-saster right now. It's not like I'm ever at risk of having a stranger knock on my door and ask if they can peek inside my house because they've heard it's just so DAMN IMMACULATE. I just mean to say that it's unusually bad right now.

[Side note: if you're interested in seeing a person down an entire can of Vienna sausages in 6 seconds flat, my house is in fact the place to come. That rumor is true.]

I could probably come up with a pretty good excuse for the way it looks -- we were away from the house all weekend so I didn't have time to clean; I have a two year old who destroys the entire house 2.4 seconds after I finish cleaning; I was going to fold laundry but accidentally dished up a bowl of ice cream and watched The Bachelor Pad instead.

You know, the type of excuse everyone could use but instead... they just clean their house.

It's so bad right now that Adam came out of the bedroom earlier tonight and asked, totally disgusted, "Have you seen how dirty our bedroom is?"

"Not recently," I told him. "I'm purposely avoiding it. As long as nothing has sprouted legs and is currently walking around on our bed, there's nothing new to see."

This is exactly how I feel today
Now, you have to understand that we're not filthy people. In fact, I really enjoy having a clean house! My problem is that I don't feel the need to put everything I touch in it's proper place immediately after I'm done using it, which means that I tend to leave little piles throughout the house (piles of things to put in Morgan's room, paperwork to file, paperwork to shred, things to take upstairs, etc.). I'm not talking about the kind of piles you see on Hoarders that have developed their own personality and would require a wrecking ball and a 10 man construction team to get rid of. My piles are small, really. And they get cleaned up... eventually.

Another thing that often keeps me from cleaning is Morgan, and I don't just say that as a cop out. She is just such a force to be reckoned with that I usually have to wait until she is in bed before I can get anything accomplished. And sometimes... well, sometimes I just don't feel like cleaning. Sometimes a little "me" time is more important.

Like now, for example. Morgan is in bed, Adam is at work and I have some time that could easily be occupied with housework but instead, I think I'll curl up in bed with a good book. And do you know what? I probably won't even put the book away when I'm finished.

Tomorrow is another day and maybe, just maybe, I'll wake up with a little more ambition.

Wednesday, August 17, 2011

August 2011 Newsletter: Happy 2nd Birthday, Morgan

Dear Morgan,

You turned two years old last week, though I have to tell you that I'm not entirely sure how that's possible. I mean one minute you're in my arms, this sweet, helpless little baby with a squishy face and saggy skin who does nothing but eat, sleep and poop (my goodness did you poop!) and then suddenly you're this little person who talks and uses the potty and has an opinion about e.v.e.r.y.t.h.i.n.g.

Can we talk about that, Morgan? This need you have to speak your mind about everything? Can I expect that to stop anytime soon, or should I stop trying to wait this phase out and just get used to it? There are things must be done a certain way and if they're not done in a way that you deem satisfactory, all hell breaks loose. For example, when we're driving and I happen to be sitting in front of you, the seat must be reclined far enough back that you can touch it with your toes. As soon as we get into a vehicle you assess the back-of-the-seat situation and if things aren't to your liking, you immediately start screaming "That! That!" or "Do it! Do it!" As if I know exactly what that is and what needs to be done with it. (Though this scenario has played out enough now that I do know what you want and I quickly oblige, so I guess you win this one.)

These Terrible Twos are rough, kiddo. I was in tears twice this week due to sheer frustration with you. Life would be SO MUCH easier if you could just understand a few things. 1) It isn't always your turn. I love that you are beginning to grasp the concept of taking turns, but in order for it to really work you have to let other people take their turn, too. 2) When I say something, I really mean what I say. For instance, when I ask you to stop doing something, put something away, please sit down, etc, I actually want you to do what I've asked. I'm not trying to use some kind of reverse psychology tactic on you. I'm really pretty simple that way. On that same note, when you ask for another cookie and I tell you they're all gone, I mean that they're all gone. As in - there are no more; they have ceased to exist. Believe it or not, I don't crap cookies and repeating your demands over and over, louder and louder each time, does not make the Magical Cookie Fairy appear on her glistening, winged pony. 3) Sometimes it's just easier for me to do something rather than wait for you to do it. As much as it upsets you when I do it myself, I promise that there will plenty of other opportunities for you to sweep the kitchen floor.

Your confidence grows each day and you like to assert your independence at any given opportunity -- dressing yourself, emptying the contents of your potty chair into the toilet after you've gone to the bathroom, climbing in and out of your crib unassisted, opening your own string cheese or yogurt, choosing which items on your plate you want to eat and which ones you'd rather give to Dixie. It seems like each day there is something new you want to try and, while this can sometimes be a great source of frustration for me, it makes me proud to say that more often than not, you succeed at those new things.

Your vocabulary gets bigger every day and you've become quite the little parrot. You like to repeat the things you hear, which is funny until you repeat a naughty word you've overheard your daddy say. (If I were being totally honest I would tell you that it's actually hilarious when you repeat swear words. But since it would be a perfect example of bad parenting, I won't admit that I sometimes ask you to repeat them just to make me giggle.) You've taken to calling your dad "Honey" or "Babe" and you frequently argue with him, insisting that I'm your wife. One of my favorite things to hear you say is, "Wee har you, honey?" or "Wee go, Mama?" when you're wandering through the house looking for your dad or I.

Morgan, I've always been under the impression that living with a two year old is basically a string of horrible experiences interjected with a few moments of laughter. I'm not very far into this journey, but I think my opinion of two year olds is changing. If this year turns out to be anything like the last two, I think it's safe to assume that there will be those moments of horror, but there will also be plenty of laughter and more than a few moments of absolute wonder. Though I recognize the many ways you've grown and constantly find myself amazed at what a little girl you're becoming, there are times that I look at you, especially when you're sleeping, and see my little newborn again. You still have her same round nose and soft skin. You breathe the same sigh of contentment she did when she snuggled into my chest. You have her chubby toes and wide fists. The top of your head still smells the same. And you're still the very essence of my heart and soul.

Happy (late) birthday!

Sunday, August 7, 2011

Remember when I used to blog?

Yesterday my friend, Holly, told me that she misses reading my blog. I was flattered, really, because I didn't think anyone would notice that I haven't been writing much lately, and this was actually the second time Holly had mentioned it.

I think this means one of two things: 1) there might actually be other people out there missing my posts, or 2) Holly is the only person on the planet who thinks I'm as funny as I do. Thanks for that, Holly.

It's true, I've been out of the blogging loop for a couple months. I haven't written (or read) much of anything lately. Things have been a little strange around here with these repeated hospital admissions, trying to find the time and energy for some fun summer activities and dealing with a toddler who thinks that screaming at the top of her lungs, swan diving out of her crib at all hours of the night and incessantly tormenting the dog makes her more accomplished as a Terrible Two. By the way, thanks for sneaking that strawberry out of the kitchen and hiding it in the rocking chair earlier today, Morgan. That was a fun little surprise for me and my new shorts.

I'm hoping to get back in the game very soon. I have a couple ideas rolling around in my head that I'd like to turn into real posts sometime in the near future, but we'll see how that works out. In the ebb and flow of life, my creativity seems to be lingering on the ebb side a little too much lately. On that note, is there anything you want to hear about? Anything? I'm open to suggestions.

In the meantime, here is a short clip of Morgan on her birthday last year. Can you believe this kid is turning two this week???

Monday, August 1, 2011

Blogger Challenge: On CF Progression and Control

A fellow blogger and CF warrior, Piper, recently presented a challenge to the CF community. Basically, she asked us to write a post explaining our thoughts and/or personal experiences dealing with CF progression and control. Since this is a topic that has been on my mind even more than usual lately, I knew right away that I would be participating in this challenge.

As some of you already know, I've had a pretty rough go of things on the health front this year. In the past 12 months, I've been hospitalized 5 times. This is very unusual for me and has been incredibly frustrating (terrifying, maddening, life-disrupting... pretty much any of those descriptions fit the bill). I recently witnessed an exchange between two CFers in which one was told, somewhat unkindly, by the other that she must come to terms with the fact that CF is a progressive disease. "I've been where you are," he said, then went on to describe all the terrible things he's been through and effectively ended the conversation by telling her that she needed to stop living in denial and accept the reality of CF: a steady and unavoidable decline in lung function and overall health.

I don't necessarily agree with the thought that CF is progressive and the best thing we can do for ourselves is accept that cold, hard fact. It feels a little bit like giving up to me.

On the other hand, there are people who believe that CF is an entirely controllable disease. The school of thought seems to be that through total compliance with medications and therapies, plenty of exercise and a positive attitude, anything is possible! Hmmm... I don't really agree with that either.

In regards to CF, I lived comfortably in denial for much longer than I care to admit. Even though I lost a sister to CF, I figured that I was the exception -- I would always be healthy. I slacked on treatments and skipped out on clinic time after time, and do you know what? I was really healthy for a long time! At some point during the years (likely when I moved in with Adam, since he's always pestering me about taking care of myself) I became more compliant. There was still room for improvement, but I was doing better than I had in a very long time - at least one treatment a day, staying active, and going to clinic much more often. I was starting to realize that I may not be the exception, that there might be something to this whole "disease" thing, but I still told myself that I would do better when/if I started getting sicker.

After Morgan was born I had an experience that forever changed the way I look at things. When she was three months old, I became very sick. I was sicker than I'd ever been up to that time (or have been since). There was a moment I remember as vividly as if it were yesterday; I was sitting in bed on 6 liters of oxygen, unable to even walk across the room to use the bathroom on my own, feeling absolutely miserable, seriously questioning if I was going to wake up the next morning. I wondered is this it? Have I wasted all the time I've been given? Am I really going to leave my husband and baby alone? It's a desperate feeling, believing you may be out of time and knowing there is so much more you could have done for yourself.

That was "my moment". Something inside me changed that day and I've spent every day since then making a conscious effort to kick CF's ass. Sometimes I feel like I'm not very successful -- I've been totally compliant with treatments, I've exercised like a good girl, and I've cut back on hours at my job to dedicate more time to taking care of myself. I've done everything that I should do, far better than I ever have, and I've still had the most difficult year of my life (health-wise). Still, I refuse to chalk it up to progression or accept that this is my new norm. I've promised myself that I'll do everything within my power to fight this monster.

Which brings up a good question. What can we do? How much control do we really have over this ugly disease? Personally, I don't like to say that CF is "controllable". I feel like saying that it's controllable almost implies that those who have lost their lives to CF have done something wrong; that they didn't try hard enough; that they would still be alive had they just done more for their health. It would imply that my own parents could have, should have, done more for my sister. Maybe she just didn't want to live badly enough. Maybe if Mom and Dad had forced her to exercise more or if she would have been just a little more positive about things she'd still be here. Do you see how ridiculous that is?!?!

I haven't even begun to discuss how different CF is for everyone. Take my family for example: my sisters and I have the same gene mutation, we were raised in the same environment --we share DNA for cryin' out loud!-- yet our stories are so very different! Shannan was only 14 when she passed away. I required three sinus surgeries by the time I was 10, my sisters didn't have any. I was able to get pregnant, Teresa wasn't. The differences between three sisters are endless, which just goes to say that one person's CF cannot be compared with anyone else's. Your experiences are not mine. My CF is not yours.

So -- "CF is progressive, deal with it" or "take control, CF is powerless" -- which end of the spectrum do I find myself on? I can't really answer that. I don't think a person can pick a side and commit to staying there forever. In my limited experience with CF I've bounced from one end to the other and, at one point or another, I think I've landed everywhere in between. Chances are that I'll continue changing my opinions and views as I experience new and different things. What I do know for certain is that this disease is difficult enough to deal with on it's own, there simply isn't room for judgement, guilt or criticism.

And so I'll continue to take each day as it comes, doing my best to manage my CF.


Wanna participate in this blogger challenge? Here are the guidelines: 

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.