Saturday, January 31, 2015

Toddler Talk Part 4

These entries are from Sept- Oct 2014 (so K was about 2 years and 3 months. I am just a little late posting). I guess anatomy was something of interest to her at the time.

1. After grabbing a container of peanuts from her snack drawer she announced, "I want to eat PENIS!"

2. I let Kaylee sip from a can of Sprite (I actually don't usually drink soda, but we were out all day, I forgot my water bottle in the car which was about 7 blocks away, and the street vender told me he was out of water, and it was September which is HOT, so....) Kaylee sips the soda and shouts (in front off the courthouse I might add),
"I am drinking beer!!"

3. Holding her stuffed cat, "This is not a huge penis, this is a tail."

4. "When I grow up I am going to have HUGE boob boobs just like mommy." If you saw how large (or not large) my chest is you would know why this is so funny.

5. "When I grow up I am going to grow another arm and hand."

Thursday, January 29, 2015


I am on a waitlist to get into ICU. Yup, ICU as in intensive care unit. I never realized there were waitlists for such places. Makes it sound like a nice restaurant or swanky hotel despite the fact that I don't think anyone ever wants to end up in ICU. Thankfully, I am not critically sick which is why I have been waitlisted. I do however need a nice dose of IV antibiotics. After calling the doc asking for a two week tune up I learned that the bugs I culture and my body have made a pact against me. It seems the bugs wreaking havoc on my lungs are only susceptible to medications my body decided to become allergic to.

The good news is that being allergic to medication does not mean you can't take them. It simply means you need to be desensitized to the meds in an environment that you can be watched closely to ensure that there is no reaction (I think anaphylactic shock it the biggest worry) hence the ICU reservation. I was told my name was on the list and an intake coordinator would call me when a bed opened up.

Na├»vely, that weekend I carried my phone everywhere I went, checking every so often in case I missed the call. Then Saturday night turned into Sunday. My hubby took Monday off in case the call came. As Monday came and went we realized this wait may be longer than anticipated. We have been waiting almost a week now with no sign of an open bed.

In the time I have been waiting I have had some orals, a week of IVs (Aztreonam) that we decided was ineffective and I have switched back to orals. I am hoping these orals do a better job of holding me over until a room opens up because I am feeling desperate for some relief.

Hopefully, in the next few days I will be updating from my hospital bed!

Tuesday, January 27, 2015


The other day I tried to return a call from a friend, but got her voice machine. Her son is the same age as Kaylee and they often have play dates. Recently, with winter here, her friend was sick for so long we had to postpone play dates for three weeks in a row and the week after out playdate he ended up in the hospital due to sickness. As I hung up the phone, disappointed my friend didn't answer, Kaylee came walking up to me.

"So mom, how is Ethan feeling today?"
I looked up from my phone not realizing she was standing there. Her big blue eyes were looking up at me eagerly waiting for my response. I was surprised she remembered he had been sick as it has been several weeks since a canceled playdate.

"He is all better. That was nice of you to ask about him"
Kaylee responded with relief in her voice, "That is very good news!"
and ran off to play.

So much of the time I worry CF will fill Kaylee's memories. That she will remember the times we spend in the doctors office, or the nights I wake her with my cough from the next room over, or the way I always decline chasing her through the park because my old lungs simply can't run anymore. Or the times she wants me to carry her and I make excuses because I hate to tell her no, but in reality my breath is too shallow and I have days I simply can't manage walking and holding her. Or the times I huff and puff at the top of the stairs, or the times I need to nap instead of being able to play, or all the horrendous moments CF has put in our lives.

But maybe after two years of motherhood and 30 with this god awful disease I have finally seen something good come from such an ugly part of life. At two, Kaylee has learned to think of others which is something many adults have not yet mastered. Maybe CF is giving her life lessons she could not possibly learn with a healthy mom. Maybe this disease will teach her first hand about empathy and thinking of others. Having CF be such a large part of her life may fill her memories with hardship, but maybe it will fill her heart with understanding. Maybe despite all the horrible aspects of CF it will teach my daughter about the more important parts of life, to connect with and understand others. Maybe a part of her will grow up grateful for the lessons she learned from CF rather than a hatred for all it took from her. And maybe I am learning more about accepting the life I have been given from my daughter than I ever imagined possible.