Tuesday, March 30, 2010

Spring Break

Spring Break has started off with a bang. I engaged in a hair color experiment that went seriously awry, and thankfully, I have a week before going back to school to sort it out. Although, looking like an Easter egg during the Easter season isn't so bad, really...

Then I developed a cold or something. I have felt miserable for two days running fever off and on. And, even though I feel bad, I hesitate to complain because I know that my girls can trump my silly little health complaints any day of the week. But, it is hard to keep going with everything that needs doing when I am feeling less than my best.

And, finally, yesterday I went to the plastic surgeon's office and had two cysts removed that had developed in the corners of my eyes. After 3 hours of waiting and 5 minutes of surgery, I am cyst-free!

So, today I look like a sick, sniffly Easter-Egg Headed lady who lost a prize fight, but it is all good. I'm just grateful to be home and to have Dan home. Sarah is out with friends, but maybe we will all be able to get together and head out for a little adventure.

Friday, March 12, 2010

Peeing My Pants

Dan is shake, shake, shaking in her vest. We are in the hospital in Birmingham just vegging out and watching mindless television. She hasn't felt well today, and even began running a bit of a fever this afternoon. Generally, she is better than this after she has been on I.V. antibiotics for more than a week. I know she is frustrated. She wants to feel well. And, I want her to feel well.

I was supposed to come home today, but stayed an extra day. (That seems to be a recurring theme, since that is what happened during my last visit.) But, it's okay. I love my beautiful Dan-Dan and it is an honor to be here with her, shivering in my jacket since she keeps the room like an icebox. I love the Mom-Job. And, most of the time, we have fun together. Even in the hospital... Even with things like lung transplants, and weight gain requirements, and strange fungal infections looming over us.

But, honestly, I don't want to talk about sad CF stuff today. Sometimes I get sick to death of my own drama. I just want to take a commercial break from worrying about Dan's CF stuff, worrying about Sarah and how she is handling her sister's recent turn of events, worrying about how all of this could possibly affect Micah, considering if I am living as a faithful Child of God, and beating myself up for feeling as if I am unraveling at the seams part of the time. So, for the remainder of the time I am typing this post, typical CF fodder is off limits. Instead, I want to focus on some of the more curious and amusing aspects of this life we lead.

The other night, Mom and I were driving up to Birmingham in a torrential downpour. I mean, the water was coming down in buckets. J.R. was following behind us. (Truthfully, I had been upset earlier, so Mom didn't trust me to drive up on my own, so she was guarding me from the passenger seat.) And, I was entertaining her with funny stories about my kids at school. We were laughing, and driving slowly and carefully to navigate the weather. I could only see a few feet in front of me, until lightening flashed intermittently, briefly lighting up the highway and the surrounding woodsy tree-lines stretches of nothing that line I-65. We had planned to travel up because Dan was scheduled to have a G-tube surgery, but the surgery got cancelled and we still wanted to make the trip up to visit. So, I packed my little rolling hospital suitcase, my oversized comfy pillow, and 12 small bottles of oxygen. I packed the oxygen with the plan of giving it to Grammy and Grampy so they can bring Dan home when she is discharged from the hospital.

Now, I'm not sure if the general public is aware, but oxygen is flammable... And, those bottles are kind of dangerous. When instructed on the use of oxygen, one is taught a lot of safety rules about correct procedures for handling oxygen safely. In fact, during the training session, the words "potential missile" and "explosion" were clearly mentioned. Now, initially, it freaked me out. But, now... We're kind of pros. We just chuck those bottles in the back and move on down the road.

But, driving down the road in the torrential rain, with lightening flashing and thunder rolling, I had an acute awareness of the oxygen bottles resting in a duffle bag in the trunk of the car. And, imagine my keen, spine tingling, hair-standing-on-end experience, when a fire ball fell from the sky probably twenty-five feet to the right of the car... My little, red Jetta careening down the road with me driving and Mom in the passenger seat carrying twelve little potential missile-like projectiles with the ability to explode and kill or maim us all, and maybe even some innocent travelers navigating that same stretch of I-65 on that rainy, dreary night. Well, holy cow, Batman! That was something to consider.

I picked up the cell phone and exclaimed to my dad, J.R., "Did you see that?"

He replied, "Yep! I just peed my pants!"

And, it was a pee-your-pants kind of moment. I have never been that close to lightening in my life. It was amazing and scary and comical. Recently, I spend more time than I would care to admit thinking about life and death as it relates to me. I spend more time than I would care to admit thinking about living life as it is, and living life after the scary, miraculous lung transplant for my daughter. And, I spend more time than I would care to admit thinking about what life will hold for me if I have to go on without one of my kids. It's morbid. It's sad. And, sometimes it leaves me frozen. (And, I realize I am violating my own commercial break a little here, but I say all of this for a reason.) As that lightening bolt crashed down hilariously and dangerously close to my car filled with oxygen tanks, it became glaringly apparent that none of us have any kind of a handle on life and death. It could have been over quick as a wink, and I would have been staring at God, hands on hips, saying, "You're KIDDING me, right?!"

So, I was jerked back into the crazy reality of my life, and the almost comforting understanding that none of us is promised anything. Life is a gift. And, it is fun. And, I am ever so grateful for the moments that really make me want to pee my pants.

Thursday, March 04, 2010


I'm sitting in the hospital listening to the gurgling sound of the oxygen coming from the wall. Dan is resting, and I am relatively content and at peace. Initially, I was planning to come home today, but I decided to stay an extra day when the doctor came in with news of the "events" of the day. Danielle had a special Pulmonary Function Test (PFT) in the "Box", and they also wanted to do an Arterial Blood-Gas Test (ABG). So, I'm glad I was here for all of that.

Dan gets so freaked by needles because her veins have been terrible for years and she has had a lot of trauma with getting stuck over and over. I try to help her remain calm, but sometimes Fear just grips her and there isn't much I can say to help... But, I'm here. And, I don't leave her because, while I completely understand feeling afraid since I have such an intimate relationship with the emotion lately, I don't like Fear being allowed to snuggle in next to my kid... It can come and terrorize me. Whatever... But, I want Fear to leave my girl alone. "You can't have her! She already has CF. She doesn't need you, Fear, cozying up and making a home in her..."

So, I stay... And, I try to bring Peace, our sometimes fleeting friend. Sometimes, I try to invite Humor, who will appear readily and unexpectedly. But, most of all, I just try to bring Comfort. Sometimes I'm lucky because Comfort stays with me often, and I am able to send her out in times of strife. She is able to hold hands, stroke hair, bring wet wash cloths, and look into eyes. She has empathy and compassion for Fear. She also is able to co-exist with all of the Emotional Visiting Family Members. Comfort sustains us through all the trials, and if I am able to bring her along, I will always stay.