Sixty-two Days

Tonight, for the first  time ever, every lot on our cul-de-sac has a house on it and every home has a family living  in it.  We met not one, but TWO sets  of new  neighbors today!  One family moved in directly across the cul de sac from  us, and the other moved  in two days ago, two doors down.  Lots of  new faces and names to remember.

I mentioned in a previous post that our very good friends and dear  neighbors moved back to  thier home in The Netherlands.  We all miss them, but the pain was lessened a bit today as we met the family who bought their  house.  This  family has a 5-year old  girl, and 3 year old girl and a one month  old boy.  Isabelle and  our 5 year old neighbor Maddie were pretty excited to  meet the  girls.  They played together outside all afternoon, which  I’m sure was a nice break for the girls’ mom.  I was pretty proud of Isabelle, actually.  She introduced her new friend to other kids as they wandered in and out of our yard, brought her  new friends in to show them where the bathrooms are, “just in case”… I think they’ll get along…well, as well as 5 year old girls can, which means there will be some bickering and tears and bossing around, but mostly good times.

With the  addition of this 5 year old, there will now be 9 children  in kindergarten from this subdivision at our elementary school.  We’re not a huge subdivision, and our school is not large, so this is kind  of amazing!  We’ve go sooooo  many kids in the subdivision now.  We had  five babies born  since  the end of of May – all girls, and the two families  who moved in today also have babies.  It will make for fun summers for years to come!

THe  only other thing worth noting today, really, is that I realized for the first time  how many letters  Emily can name correctly.  I knew that  she knew a  few, but during our “summer school”  session today I pulled out some flashcards for her to play with…she got 12 letters right!  I was very surprised!  I’ve never worked  on this with her, but I  suppose she picked  it up at daycare, or from Dora or Superwhy.   She  was pretty cute, too, after supper.  She decided that  she  wanted to “Do my summer school” again, and went ahead and got out her puzzles and activity books.  She sat at the table for a good  half hour, happy as a clam to be working on her “big girl” work.  Gotta  love that kid.  Oh, yeah, I almost  forgot.  Tonight when she wanted me to go and get something that  I  told her to get for herself she looked at me and said, “No.  You get it.  Come  on mom – vamanos!”  Bad enough she bosses me around. Does she have to do  it in Spanish?

Up to this point, I’ve mentioned Cystic Fibrosis only a bit in this blog.  I’ve alluded to Emily’s treatments a few times, but I’ve never gone into what CF means in our life.  It’s a pleasure to acknowledge that fact, because, it means that CF has not factored heavily into any of the days I’ve chronicled so  far.  In fact, CF hasn’t factored heavily into any of our days for a long while now.  (I’m sure there’s some Law of Nature that dictates that TOMORROW we’ll have a MAJOR CF dragon to slay, simply because I mentioned this…)

But, since CF is part of our days in a thousand small ways, I thought I probably should devote a bit of time  to it.  I won’t go into to what CF is.  If you’re reading this, you know me (So you know at least the basics already) or you’ve come here from CysticFibrosis.com.  If you’re not in one of these categories, and  you care enough to learn, check out www.cff.org. 

So, what does CF mean to us on a daily basis?  Essentially, we are at a place where all we have to do is stay in a routine of medications and treatments.  Oh, and make sure Emily eats.  That’s the hard part.

A “treatment” for us, right  now means that Emily gets two Puffs of Albuterol from an inhaler, then gets either one or two medications (Hypertonic Saline and/or Pulmozyme) through a nebulizer.  The  nebulizer medications are done while she wears a therapy vest which vibrates very, very quickly.   After her vest session is finished  she takes one “hit”  of Flovent from another inhaler.  The purpose of all of these steps in connection with  each other is to open up her airways, thin the mucus that builds  up in her lungs as a result of CF, shake the mucus loose, break the mucus down so that it can be expelled from her lungs, and promote healing of the  lung tissue.  This all happens twice a day.  The whole cycle takes about 35 minutes, right now.   This can  change if  we have to add a medication, do longer sessions, whatever.  We haven’t had to make any changes in  a LONG time.

Every time Emily eats, she takes a digestive enzyme.  This is so second nature that it’s (almost) easy to forget.  We (or someone) have given Emily enzymes with  every meal since she was four days old.    Amazing.  Emily also takes a pro-biotic to help her stomach keep a good balance of good bacteria which  aids in digestion and keeps the evil villian c.diff away.  If you have  not been acquainted with the  evil villian c.diff, conisider yourself lucky.  Very lucky.

Since Emily is not a voraicious  eater, and, since her body needs four times the calories as a non-cf kid, and because her  doctors want her  weight to be in the 50th percentile , we do our best to make sure that she gets a variety of high fat, high calorie foods each day.  Not as easy as it sounds.  We occasionally add calorie boosting powder to her foods.  Not often though, since she can sense it’s presence and  refuses to eat whatever food it’s added to…  Oh, and she would also rather have carrot sticks than ice cream, she ate two spoonfuls of corn for dinner tonight and left  her chicken nuggets and mozzarella stick on her plate and will not allow a cookie or cake to pass her lips.  *sigh*

Because getting  her to eat is as hard as getting me to not eat, Emily got a feeding tube placed in her stomach last August.  I NEVER thought that I’d be able to casually mention the fact that my daughter has a feeding  tube permanently placed in her stomach.  Making the decision to have her get it was HELL.  I fought it with  everything I had for two months before realizing, in one, thirty second  revelation that she needed  it.  About  a month ago a new neighbor (someone who did not get  to hear me moan and wail for two months about the pros and cons of the tube) asked how extensive Emily’s medical needs were.  I  described her meds and vest and stuff, but forgot to mention her tube.  That was the moment I realized that CF has become, for the moment, nothing more than  something we simply do every day.  It’s like brushing our teeth or doing the  laundry.  It has to be done, so we do it.

Each night, after Emily goes to  sleep, we fill up a bag, similar to an IV bag with three cans of a  special formula of Pediasure, four scoops of a calorie additive, and three special enzyme capsules.  That bag is hooked up to a pump and attached to the tube that sits in Emily’s tummy permanently.  A few buttons are pushed, and  the  feeding begins.  It continues for about 8 or 9 hours.  Sometimes we have a leak.   Sometimes Emily throws up in the  middle of the night or first thing in the morning.  Usually, Emily wakes up with the biggest,  wettest diaper you can imagine.  Other times she somehow wakes  up dry, walks to the bathroom, sits on the potty and pees an ASTOUNDING amount for  a little girl.  Seriously, it’s incredible. 

And, we do this, every day.  That’s the ins and outs of it.

There is, of course, the  non-tangible.  The emotions.  The fears.  The worry.  Those things are there every day, too.  But, I”m not compelled, anymore to work CF into every conversation.   I can actually talk about other things for a really long time before anything remotely related to CF comes up,  And, when it does, there  is usually a really good reason.  I’ve come a long way from the day when I told the  deli lady in  Piggly Wiggly that Emily had CF simply because she commented that Emily was cute. 

For a long time I imagined the end of Emily’s life almost daily.  I cried each and every day.  I still do sometimes, when I read about a child who died of CF.  When I talk to or read the blog of another CF mom and I realize that I am part of that club, too.  I used to spend hours and hours reading everything I could find online  about CF.  Now, I’m as likely to read a regular mommy-blog as a cf blog.   

There is no way, and not enough time or room in this post to describe all  of the ways that CF has shaped me as a person, or Isabelle as a sister or Daddy.  I could, and  might someday, write an entire blog devoted to the thoughts that  flitter through my mind dozens of times a  day that I wouldn’t have if there were no  cf.  But, for right now, I don’t have to.  Because, CF is in the back seat.  We tend to  it as needed, and it behaves nicely and stays there.  I am all too well aware that this is temporary.  Someday, probably sooner rather than later we’ll have a BIG HAIRY SCARY CF battle on  our hands.  And then  another, and another and another. That’s the  way CF is.

Shortly after Emily was born and diagnosed, a wonderful CF mom who is a member  of a website to which I also belong, told me that eventually we’d find a new normal.  Life would never again be what we were used to, everything would always be different than the way it used to be.  But, she promised, it wouldn’t always be so hard, either.  I wouldn’t wake up every morning feeling like someone else.  We’d find a new way to be ourselves.  A  new normal. 

That’s were we are right now.  Living our lives that have become  normal to us once again.  Waiting for the next mountain that we have  to climb, but, enjoying each day that is simply, normal.

A  little while ago, the doorbell rang.  I answered  it and found four shirtless young men armed with squirt guns and light sabres asking “Is Isabelle home?”  Yikes.  In all fairness, they  had stopped at our neighbor’s house first.  Maddie is also 5, has an older brother and is more accustomed to squirt gun fights than my “prissy” little  girl.  But, Maddie was  not at home so this band of kindergarten warriors came after  IZ, instead.  To her credit (I  think) she joined right in.  

After a few squirts landed on her favorite “skort” she ran inside to  change into a swimming suit.  She returned, only to be greeted by shouts of  “Oh yeah – Isabelle’s got her swimming suit on” and “Yeah baby!”  Are you kidding me?  From 5 and 6 year olds???? 

Emily, watching the mayhem that ensued for the next 40 minutes remarked, “Guys are chasing Isabelle.”  Emily, I think we’ll have to get used to that.

Emilyism #1

Mom:  What should  we  have for lunch?

Emily:  Mac. And. Roni. And. Cheese.

Emilyism #2

Mom:  Emily, you need to put on socks and shoes before you  go outside.

Emily: No.  I don’t want to  wear shoes and socks.  I want to  wear my barefeet.

Emilyism #3

Emily:  (after standing on a chair at the kitchen sink to “wash dishes”) Mom!  Help!  Everything is soapin’ wet!

“But MOM!  We’re too busy this summer!” she wailed.

Not that the wailing  came as a surprise.  Isabelle has been  spinning a bit  out of control, emotionally, lately.  She’s always been a bit of a drama queen, and is given  to crocodile tears most  of the  time.  But, these last few weeks have seen more meltdowns and heart-wrenching sobs that I can remember since she was two. 

The too busy sentence was uttered as we were wrapping up a playdate this  afternoon.  She’s never been one to end a playdate graciously -  she just hates to see a good thing end.  I assured her that this wouldn’t be our  last get-together with our friends this  summer in an effort to  ease the separation, and I got hit between the eyes with “too busy.” 

It’s funny,  I”vebeen trying to  keep us scheduled and active, in an effort to make the most of the summer.  I didn’t think I was OVER-scheduling things.  We have had a busy week with zoo class and having friends or family over a few times, but I’ve been  enjoying the “Slow” pace of things.  Apparently my daughter and I have different guages  of  “slow.”

So, tomorrow will be a slow down day.   Sleep in, lazy breakfast, do our summer school that has been  neglected this  week, practice piano…I do hope to get in a trip to the gym, dropping the girls at the childcare room there, but we’ll see.  We’ve been invited to  go swimming at the local pool, but I  think we’ll pass.  We’ll do some driveway painting and go on the bug-hunt that we missed earlier in the week.  We’ll make our Super Lucky Cereal Bars from the recipe Iz picked out of our new cookbook.   We’ll just slow down.

She’s had a lot of changes and a lot of big ideas  to deal with.  Her friend moved away, there are new kids moving in, her best friend/neighbor’s Grandpa died which brought up lots of questions about death (there is, I  think, a very  profound post coming about this…), and, I think she misses her school friends.  So, melt downs are not totally unexpected.  Maybe she just needs a little time focused on her.  We’ll try to do that tomorrow. 

I’m just tired today.  TIred and unmotivated  and irritated with myself that I wasn’t  more productive today.  It’s been a blah day.  Blah weather, Blah food, Blah feeling all around. 

I’m  sure it has something to do with the fact that I slept in really late.  We all did.  Even  Daddy.  But, when I  finally rolled out of be, I couldn’t  get moving.  I couldn’t get  “woken up.”  j

I”m irritated that my house, which looked great -  all picked up and organized  – all week, now has piles of clutter and baskets full of laundry all over again.  I had a sneaking suspicion that the  clutter has something to do with Daddy who was home all day the last two days…but, when I inspect the  piles, it’s my stuff.  Humph.

Well, there’s always tomorrow.   I can get back on track.  I just have to do it, that’s all.

The girls  seemed pretty blah today, too.   Isabelle was invited to a  friend’s house to  play, and she went, but  didn’t seem as  excited as I thought she would.  Emily had no appetite, which is a change from the last few days.

Maybe we just needed a down day.  Tomorrow is Zoo Class for  both girls.  It  will be Emily’s first zoo class, and I”m a little nervous  about how she’ll behave.  I told her that we would be listenig to a story, doing some art projects, having a snack, singing some  songs…and that we’d have to  listen to  the teacher just like at Daycare.  Her response?  “I think  I probably don’t  want to listen, actually.”  *sigh*

I’ll hope for the best and keep reminding myself that she’s  2.  I’ll update  tomorrow.