Monday, August 26, 2013

suggested. not mandatory.

In 2 weeks from today my girls will have completed their first days back at school.  Fourth grade for Bailey (Seriously.  How am I not medicated right now?!  Fourth grade?!) and second grade for Tate (anything is younger than fourth.  Except fifth, sixth, seventh...oh Lord help me.)

During dinner time on that first day back I will have heard about friends in their classes and what they think of their teacher.  They will have returned home with their bookbags overflowing with papers to be signed and it will take me an hour filling in the calendar with all of the "dates to note."  Taylor will flop on the couch exhausted from having to be "on" all day, and the only words I can say to her for a good hour is "do you want a little butter on your popcorn Sissy?" (the answer is always yes.  She takes after her mama.)  Bailey will be tired too, but physically instead of socially, and will require Gatorade, a snack and power of the remote.

I didn't miss school this summer, and my girls didn't either.  I didn't miss the morning rush of attempting to entice Taylor in getting ready without threatening or yelling, and I didn't miss looking at the clock in a panic knowing I still had to do a 20 minute treatment on Bailey when I only had 18 minutes before the bus came.  The bus even comes right to my house (praise God) and many mornings we were still rushed.  We didn't miss squeezing in homework and a rest time after school before jumping in the van to go to choir or dance.  I didn't miss packing lunches and then seeing 8 out of 10 grapes return home, smushed.  We didn't miss homework.

The girls had lists of "Suggested Summer Reading."  Suggested to me meant not mandatory.  But even still, I meant to take a trip to the library and check some of those books out.  Really, I did.  I even meant to see if any were free or cheap on my Kindle.  Really, I did.  But I didn't.  I read them one chapter aloud of Anne of Green Gables and they read books they already own, and only when I insisted.  Yup.

Taylor still receives speech help at school, and came home with a summer calendar, where every (yes.  every.) date had a "suggested" activity.  Again, I take that to mean not mandatory.  So no, I didn't ask her to describe to me characteristics of an apple and a banana, how they are similar and how they are different.  No, I didn't enlist her to lead a Simon Says game where she must use "under, over, sideways, on top, on the bottom" as a guide.  We played Marco Polo in the pool a few times, and Monopoly once.  Taylor was the banker.  So maybe I didn't help her speech at all, but I felt really good about her math skills that night.  Really good.

I'm hoping my lack of consistency in the girls' education will all come out in the wash.  I'm hoping they're smart enough to just catch up with all the other kids whose parents equipped them with the tools necessary to learn stuff this summer.  My kids didn't really learn stuff.   But I'll tell you what we did do.

The beach.  A lot.

The pool.  Pools.  A lot.

The lake.  Not as much.  But we still hit that.

Homemade milkshakes, zucchini bread and popsicles.

Painting, drawing, sketching and chalk in the driveway.

Sleepovers with friends.  Made bracelets with these friends that they will tell you - ONLY if they think you'll believe them - that if they wear them every day and never take them off, they'll someday become mermaids.

"Upside down" day - spaghetti for breakfast, bagel for lunch and eggs for dinner.  Pajamas all day and slept in their day clothes.  They laughed so hard they had a hard time going to sleep that night, all because they were wearing skirts to bed.

Vacationed with Nan and Pop in Wildwood for two weeks.  Boogie boarding, swimming, bike riding for Bailey, and sleeping in for Tate.  Morning walks to get coffee and donuts at the neighborhood bakery.  Visiting friends in Cape May and searching for Cape May diamonds.  Diving into the waves like the mermaids they are, and playing with their Barbies in the sand.  Rides at night and late night moonlit walks on the beach.  Kisses for their mommy under the stars.

Gymnastics camp for a few days while staying with Nana.  Swimming in the pool, eating in front of the tv, walks to feed the ducks, a successful clothing trip to Target and playing with their one year old cousin.

2 weeks at 2 different VBS's.  Hearing from adults other than us that God loves them and they are created to do good things.  Too many crafts to count.

Meals for a few families that needed them, helping me make them and then delivering them. Praying for the family during the car ride there.

TV, movies, computer and Ipods.  Sometimes all in the same morning.

And some more swimming.

This has nothing to do with this post.  But how cute are they.  

What did we do?  A lot and nothing.  It was summer.  And it was great.  Princeton will always be there...but my kids will not.  Is there perhaps a way to have both...endless summer childhood fun plus the suggested summer reading?  Probably.  But I never have been a good multitasking mommy.  And "endless summer childhood fun" is an oxymoron.

Someday, when my kids are grown...and yes, most likely not Princeton alums, but I'm more than ok with that...I hope they remember their summers fondly.

I hope they remember being children.  

Bonus if they can tell the characteristics of an apple and a banana, how they are similar and how they are different.

Thursday, August 22, 2013

back burner

One week ago, I went into CHOP feeling pretty confident that it was just a normal day there.  Stopped by research to have them document her stats and take blood, as she is taking a pill they are researching.  Then on to our check up as usual for my Bailey Caelyn.

We were due to get an X-ray done so we did that first.  Then Bailey did her PFT's as is customary before seeing the doctor.  About a year ago, her number was 103 and we celebrated, as she usually pulled around 100.  Around 100 was considered her baseline - a healthy child could breathe 100 or 130.  This is a lung function test basically measuring lung health.  Bailey's best was a 92 out of 5 tries, even breathing one 87.

My heart sank - I actually had been assuming it went up with all of the ocean hits we took this summer, as the salt water is basically like a kind of lung/mucus therapy.  She dives in with her first wave and comes up with snot pouring out of her nose.

But it went down, as it has gradually over this past year.

Fast forward through a long visit with our doctor, nurse, social worker, nutritionist and physical therapist and I was ONE BAT SHIT CRAZY MOMMY.  I tried not to lose it in front of my sweet B but I did.  I couldn't stop the tears.  We came up with a game plan and I was up most of the night googling things and crying.  Same the next night, with the addition of a phone call under my belt with a top CF doctor, the one in charge of her drug study, who recommended we hospitalize her.  I said no, for several reasons, which our regular doctor and nurse agreed with.  We return on Sept 16 and if her number has not come back up at least some - she has been put on an antiobiotic for 2 weeks, adding a new CF drug and switching from manual PT to the Vest - I have the feeling they'll want to admit her.  Or I know they will.

I am trying not to go into too much detail because if you are on FB with me you already know alot of this, and if I know you at all you will get a CFF fundraising letter from me soon, as our walk is in early October.  So you will be inundated with info about CF and Bailey.

But I wanted to write today to tell all you girls who read my blog (there are a few of you, yes?  and maybe a few boys!) to CHILL OUT.  Do I sound like I'm yelling?  Sorry.  I just really mean it.  We all have these times of "oh my gosh THIS could have happened to me" - be it something like a near-miss car accident, for instance.  These moments of realizing what's really important and what does not matter at all.  Or at least not very much.

Following this CHOP visit and having to stare Bailey's CF square in the face, I had this type of moment.  Everything but her health and happiness, and Taylor's, is on the back burner for me.  I just don't care.  I still have to live everyday life, and work, and all of that - but I don't really care.  Does that sound bad?  Sorry again.  I just really mean it.  Again.

Right now my girls are cracking up wrestling and talking about how their heiney cracks are in each other's faces.  They're threatening farts.  Usually that is when I pipe up with "girls, be appropriate, that is gross."  But remember, I don't care.  I am just happy they are here, in my home safe, and playing.  I am sure I will be back to caring, sooner rather than later, but for now I am simply not worrying about anything that isn't important.  And most of it's not.

Thank you everyone who has been texting, messaging, calling, commenting on fb and most especially, PRAYING for my sweet girl.  It hasn't gone unnoticed, I have noticed very much.  I am so appreciative.  I can't wait to update you with a report that Bailey's number has GONE UP.

Sunday, August 11, 2013

12 years

“I love you more now than I did then”... a phrase I typically thought trite, cliche and overused.  It usually didn’t make sense to me, as I remember the passionate feeling of love and affection I felt while dating and on my wedding day, and that intense feeling is hard to hold on to.  What is it, the “in love” feeling lasts an average of 2 1/2 years and then the “real love” takes over?  The love that takes work, time, commitment and dedication.  Loyalty and faith.

Well, that phrase has grown on me perhaps and I get it now.  Because I do love you Kevin, more now than I did then.  What I knew about you then, 12 years ago as I prepared to marry you and become your wife, is that you were a good man, raised by a good, Christian family.  I thought that we would have a nice life together, and I trusted you to treat me well. 

But I didn’t know how our life would go, I merely anticipated and hoped.  But now I least how it’s gone so far.  And because I know, I love you more.  

I know now the kind of husband you grew into being - supportive, kind, proactive, generous.  How you find me my slippers, and make sure the laundry is done and away.  How you put your arm around me in church when you know I’m cold, how you tuck me in at night even though you’re so tired yourself.  How you drive to Maggiano’s, an hour there and back, to get me my favorite kind of salad as a surprise dinner. How you make my coffee every morning and leave me a note in the bathroom, before leaving to work at a job you don’t love, so that the girls and I can have a comfortable life.  I know now how hard of a worker you are, providing for our family for the last 12 years, day in and day out.  I know now that when you earn extra money, you can’t wait to tell me about it as you always want to ease our financial burden.  

I know now how you reacted to hearing we were Surprise! pregnant, not once, not twice but thrice.  I know that you panic for only a few hours before accepting the twists and turns our life will take, and becoming excited.  

I know now the kind of care you gave to me as I was carrying our babies.  How you so lovingly held my hair and rubbed my back as I threw up, and then you’d clean up if needed, telling me to lay down.  Any craving I had, you would fulfill.  Every doctor’s appointment, you’d be there.  Tucking me in at night, rubbing my back, telling me stories to relax me.  You’d tell me everything was going to be ok, when I needed to hear that over and over again.  

And when everything wasn’t ok, and Bailey was diagnosed with CF, and then Taylor with SPD, and then our 3rd precious child was taken Home before we ever even felt a were there.  Strong yet sensitive.  Telling me that it wasn’t ok, but we would be.  Reminding me that you had faith enough for the both of us.    I know now that when we had to put a breathing mask on Bailey at 2 months old and she’d hold her breath with her panicked eyes wide open...and I’d cry my eyes out thinking my sweet baby thought we were trying to hurt would do it because I couldn’t.  You did her breathing treatments and her “boppies”, before work and after work.  You did the hard stuff because I couldn’t yet.  And you were ok with that.  I know now that when our second child cried for hours, for years, for seemingly no reason, bringing me to my wits end, you could handle it.  And you did.  And you loved her, and you loved me when I couldn’t handle it.  You are an advocate, for our children and for me.  I know now that as I was miscarrying our precious surprise baby, you grieved for that child, and for me, knowing the anguish I was going through mentally and physically.   I know how gentle you were, and how strong.  

I know now what kind of father you are.  The 2am feedings, diaperings, soothings.   That you help me when they get sick, and you change the sheets and refill the waters.  That you never once said, “what did you DO all day, the house is a mess” but instead insisted I had the harder job as a stay at home mom.  And you didn’t mind the messy house, and I believed you.  Instead, you liked hearing of the special or mundane things we did while you were gone.  You rush home, every single day, to be with your family.  I know now how much love you give to the girls, that they can trust you and they look up to you.   I know now that any man they will ever meet, will surely pale in comparison to their Daddy.

I know now marriage is work, not because I learned about that in premarital counseling, but because every day you and I make a choice.  Sometimes loving comes easily, full of laughter and joy and fun.  Sometimes it’s the hardest thing, to put one foot in front of the other to keep going.  We had a rough season you and I, and I didn’t know if I even wanted to put one foot in front of the other.  I felt like my feet were in cement and I couldn’t move.  But you dug out the cement and did the work, and helped me move again.  You showed me that marriage is a journey, ever moving and ever growing.  I am thankful now that we have seen the dark, hard nights right along with the sunny, easy days because we got through it together, stronger.  Commitment became more than a word, it was an action and we did it.  

So maybe we're in the "real" stage of love - and I'll take it.  I know now what I didn't know then - that this is better.  

know now.  

But the sight of you in a black polo shirt and khakis still gives me butterflies.  I still feel that excitement and passionate love I felt for you on our wedding day 12 years ago.  

I am one blessed girl.  Thank you Kevin Andrew, for all of your love and friendship.  May the next 12, and forever more, be as full of the joy, passion, laughter, loyalty and "real love" as the last 12 have been.