Lost mom

Earlier this week I shared that other than mom-ing, wife-ing and work-ing, I don't have much going on.  I woke early one morning and was like...um...hello?  What is this life and how did I get here.  I am usually a pretty content person, and I feel much gratitude for what and most especially who, I have.  But honestly, come on!  I have totally let myself go, in every which way.  And I'm not into it.  So I started to really take a look the last few days and so far, this is what I've found.  It means little, but to me, it's little pieces of a big puzzle.

In taking my first shower as a semi-awoke person (does that make sense?) I realized -- I buy the good razors for Kevin, but use whatever I can get for free from couponing for myself.  Do you understand how much BIGGER the area I shave is compared to his sweet little face?  I used his razor and threw mine in the trash.  Next, I evaluated my shampoo/conditioner/soap selection.  For whatever reason, my girls who are not toddlers by about a decade, still have a fondness for what surely must be simply taking any cleaning product and POURING IT RIGHT DOWN THE DRAIN.  They add a drop to their hair or body and then just upend the whole bottle.  Therefore, other than the good Dove soap bc of course we have sensitive skin, I buy whatever I can get for the cheapest amount.  Fine, good, frugal.  But meanwhile, this means I have gone YEARS without something as simple as my hair looking and smelling the way I want it to.  I don't even know what it is I want anymore, and I haven't bothered to find out.  This simple act of taking a shower illustrated to me that EVERY SINGLE THING I do, choose and use, has other people in mind.  

I believe it will make me a happier person, and better wife and mom, if I start thinking of myself if even just a little bit.  I don't know what that will look like yet, but it's been eye opening even just thinking about it.  And I know where I learned it, right at my mother's feet.  And she probably was wearing shoes that she wouldn't have chosen, but got on a good sale so she could spend the rest on my brother and I.  

5 years

This week it will be 5 years since we lost our precious surprise baby.  In a way I can't believe it's been that long, in another way it feels like much longer.  Sadness can sometimes make a single day seem like a week.  And yet during those 5 years my life has also held much joy, which makes that same single day pass in the blink of an eye.  I guess that goes along with being a mother in general - challenge/joy.  Weakness/strength.  Pain/laughter.  Loss/love.

I cry just at the thought of that baby.  My arms sometimes feel so empty despite all I hold dear. Perhaps those that know me, know our family, wonder why we didn't just go ahead and try for another baby if the loss is so great.  Kevin and I have never tried for a baby, and I am so sorry if that hurts anyone reading, as my heart is soft for all those that struggle to conceive.  That just wasn't our particular challenge in this life.  I got pregnant with Bailey at 23 years old, just a few months into taking graduate classes, and only a year into our "5 year plan".  I remember falling in the shower after peeking out at the positive pregnancy test, that I took only because I finally realized hmmm it's been awhile.  I even have a picture of the bruise on my back!  I went then to my doctor that day to take a blood test, not believing.  The nurse called and when I answered she said, "hi Mommy."  By that moment, just hours later, I was already happy at our unexpected turn of events.

Then when Bailey was diagnosed with CF, we didn't know what that meant for our little future family.  My dream was to have 4 children, but how could I knowingly bring another child into this world that has a 25% chance of inheriting both of our CF genes.  And how could I do something like pre-implanation diagnosis, where they filter out the disease carrying embryos and implant only the healthy ones -- that would mean I wouldn't have had Bailey?  I literally cried into baby Bailey's hair as I clutched her to me, wondering if she would ever be a big sister, and would the only baby I ever had possibly have a life of illness and die before me.  My grief during that first year of her life - the grief that what I had thought I had, a healthy baby, was gone...the grief that I felt my fertility and choices were taken from me..the grief that I was living in a pit of fear...was so much.  And yet again - the joy at being this precious girl's mother.  Loss/love.

When Bailey was 15 months old, I found out we were expecting again.  I was saying "I don't know how this happened" so much that my mom said  I needed to stop saying that, I sounded uneducated.  To this day I marvel at how Taylor literally fought her way into our family and it is SO her!!  And I also marvel - and praise with every bit of my being - how God knew best and took that decision from me, so lovingly.

I had always wanted a sister, and finding out we were having another girl made me so happy.  Bailey would be a big sister!  They were exactly 2 years apart (and 4 days!) and right from the first day, Bailey has been a wonderful sister.  I am so very thankful.  Life with Taylor was not always easy (challenge/joy!!) but not for one second was I not grateful beyond words that God had blessed me with these two girls.

Pictures of the girls from April 2012.

In 2012, Bailey was 8 and Taylor 6, we again find out an unexpected blessing was on our way.  When I delivered Taylor by c-section, I had a choice of having my tubes tied.  I agonized over that choice, knowing it's what I "should" do but at 26 years old, I just didn't want to say "never again."  I just couldn't do it.  And finding out we had conceived, I was so thankful I hadn't.  The first waves of shock quickly gave way to joy.  Looking back, right from the start though the pregnancy was not like my others.  I wasn't nauseous at all, whereas with the girls I was sick every day, right up to delivery.  My blood test HCG numbers weren't doubling/tripling as fast - pregnant with Taylor they were so high they had me come in for an internal ultrasound to check for "multiple" babies!!  But in late March we saw that heartbeat, and were fooled into thinking it was just a different kind of pregnancy.  Maybe a boy!  I hadn't tracked my cycle so they guessed that I was not as far along as they thought, and kept checking my numbers, which continued to rise.  But then I started to spot.  And I never spotted with the girls.  When I called to come in and be checked, they tried to talk me out of it, saying that was normal.  But I knew it wasn't.  I knew in my heart, something bad was happening.

In early March when we found out we were pregnant, we quickly decided to sell the house, our small 3 bed 1 1/2 bath.  So during spring break we stayed at my inlaws house while a crew came in and put in hardwood, gutted the kitchen and one bath.  It was a blessing and a curse that I was not in my own home.  My mother in law, a teacher also on spring break, was available to babysit when I went to the doctor for an exam, and then again for an ultrasound.  It was Kevin's birthday.  By then I knew, and I cried the whole way there.  The doctor couldn't find the heartbeat, and that never happened with the girls.  Because our insurance wouldn't pay for an ultrasound at our doctors office we had to go to a different facility, where I knew no one and the young girl giving the ultrasound didn't have an ounce of compassion in her eyes.  I pleaded with her to tell me what she saw, and she just said I had to wait.  I knew I did, I'm not an idiot, but I so desperately wanted her to smile at me like, "everything's fine, they missed hearing the heartbeat but here it is, beating strong."  Maybe that's why her eyes were blank...if she smiled it would have given false hope, if she had pitied me, she would have had a grieving mother on her table instead of a sad but still hopeful one.

Someone came in, I don't even remember if it was a man or woman, and told us there was no heartbeat and the sac was low, so I would miscarry soon.  They recommended a D&C, but I refused.  Honestly, I refused because I thought maybe they were wrong.  Maybe I'd be that fluke case.  Honestly, right up until the due date came and went, I wondered if just maybe a baby was still in there and we'd have our happy ending after all.  Grief messes with your mind.

One of the hardest moments of my life was returning to my in-laws house.  We told my mother in law over the phone but asked her not to tell the girls.  We picked them up, feigning normalcy, and took them to the church nearby that my husband grew up attending.  They have a memorial garden that is very pretty, and there we told them that our baby wasn't going to be with us here, but that we would see that baby in heaven someday.  I cry here at the thought!  My poor girls were so very sad.  Taylor especially took it hard, and still to this day often talks about the baby.

This was a Thursday, and we were at my in-laws through Sunday.  I had horrible cramps and bleeding over those few days, as I laid on the very old mattress in the spare bedroom by myself.  I missed my best friend's baby shower and my heart broke that I couldn't be there to celebrate her pregnancy, all because I was losing my own.  I read the Hunger Games trilogy, as there was no tv in that room and I didn't want to see anyone to be in a room with a tv.  I can't really believe now that I was holed up in that room for days with only books and my thoughts.  My grief.  On Sunday we went back home and after saying "wow" about the new kitchen - that had countertop, cabinetry and appliances all that I didn't even choose thinking we were moving - crawled into my own bed.

Monday Kevin went to work and kids went to school.  And it was that day, April 16th, that the baby left me.  I thought I had been miscarrying earlier as there had been so much blood already.  But I had no idea, and it was very merciful that I was in my house by myself to experience this sacred and painful passing. The pain was so strong and I needed to push, just like birth.  And I knew that was it.  The pain lessened finally and I stayed in the bathroom for way too long, almost as if when I left that room, I was leaving without my baby and I just couldn't do it.  But I did.  And I do.

Things people said - there must have been something wrong with the baby and it was spared a life of pain - / - God works things all together for good, He has a plan - / - maybe the baby had CF...all of these things did nothing to bring me comfort.  Everyone means well - I mean well when I try to bring comfort to someone - but really when there is grief there is little to be said to comfort.  And sometimes it actually makes it worse.  It was what people did that helped me.  My one friend brought groceries and others brought meals.  I remember one meal was brought by a girl from my MOPS group that I wasn't even close to.  No one else was home when she dropped it off, and I had not yet eaten that day.  The cats needed fed but I couldn't even walk downstairs to open a can of cat food.  It was evening, the food was hot and delicious.  So I stood at the counter, eating her casserole out of the container with a fork, and dropped some of the pieces on the floor for the cats.  Bite for me, bite for you Oreo. Bite for you Cocoa.  Bite for you Maela.  Bite for me.  Kevin and the girls came home to what was left of the casserole and that was an evening that I didn't have to worry about how to buck up enough to make something to feed everyone.  Even the cats.

"Thank you God for that chicken noodle casserole, it was so delicious.  Love, Oreo and Cocoa."  

Time went on and we live a life of joy despite that loss.  Our family has a hole in it and there is nothing to repair it.  We live around it.  I think a lot of families live around some kind of hole, and that is just life.  I don't think this was something in God's plan "I'll let you think you're having a baby PSYCH no you're not", I think it is just something that happened that He allowed, for whatever reason.  It just is.  Just like Bailey's CF.  It just is.  That's part of living in a fallen world.  Don't get me wrong - I blamed Him heavily for awhile, for Bailey's CF and for the loss of the baby.  But this is where I am now, and it is where I want to be.  I have to trust Him at His word, that He will redeem all for good.

So this week especially, I grieve, but I also live.  There are softball games, and a class party, and work, and cats, and drama practice, a house to clean and meals to be made.  Today I am delivering a meal to a mom with young boys whose husband is deployed.  Her husband is not there each night to help with bath time and tuck-ins, not there for Netflix and chill, not there to help bring in the groceries or help her get to sleep at night with his arm perfectly around her.   She's living around the hole.

I haven't written in a long time, despite wanting to so much.  My girls are older and I don't want to embarrass them if a schoolmate was to blunder upon my blog God forbid.  But I needed to get this all out, it helps me to keep moving forward.  That's the only direction there is, after all.

smack dab in the middle.

In just a few days, my firstborn will officially be a middle school kid.  I have not been handling this transition well, and in fact have literally made myself sick from the stress.  In all fairness, this has not been the only stressful thing on my plate recently, but the several days and nights worth of Ugly Cry added up to one sick mom.  3 meds later, I am getting better thankfully.  I am trying to CHILL OUT but that concept has never come easily to me.

Case in point.  Today I went to the dentist for my 6 month check up.  I sit back, the hygienist asks me how I've been doing.  We make small talk while she gets the instruments of torture ready (seriously, I'd rather go to the gyno any day of the week,  I hate the dentist!).   She then asks me how my girls are.  Bless her heart, she just murmured "you poor thing!" as she dabbed at my tears with the paper bib around my neck.   I pulled myself together by trying to joke around then, but the fact was I was in the dentist's chair crying, tears being wiped by a paper bib.  Pretty pathetic.

So why the crazy.  It's just so.much.change.  Bailey has been at the elementary school less than a mile from our house for 6 years - 6 good, relatively easy years.  I can be lazy - easy matters.  We know most everyone, the bus comes right to my house, at 8:45am (seriously).  But it's not just that.  The girls are together, and they love being together.  They look out for one another and when they see each other in the hall, coming or going from one "special" to the next, it's like a celebrity sighting.  

Next year Bailey will leave the house at 7am, which is earlier than she currently wakes.  She will have to wake up extra early because she has to do her treatment.  There won't be sitting at the table with the girls while they eat cereal and I nurse some coffee.  There won't be morning prayer by the front door, which we have done every single weekday, never missing.  Sure sometimes it was real fast as I heard the bus hauling down the street, but it was said.  Ever since pre-school.   They were in pre-k together at church (different classes but still), then Taylor started at Rice the same year Bailey did since she had 2 years of pre-k there.  So we have been in this routine awhile.  I also am nervous about middle school itself.   I did take much comfort in something her teacher said to me recently though - "Bailey is innocent but not immature."  She went on to say that yes, she'll hear things and learn things that I would like for her to never know about.  But her maturity will be there to guide her towards good decisions.  I agree and I'm thankful for that.

I'll miss the "littleness" that goes with being a grade school kid.  The class parties, the "all about me" projects.  The fact that as long as she's in that elementary building, she's still a young girl.  Middle school is a game changer and we all know it.  I hated middle school!  And I'm sure that's part of my problem, and Bailey might not have the same experience.   I hope.

Yes there's good to come.  Yes we are excited and looking forward to many things ahead. Yes this is NOT WORTH CRYING ABOUT...a few tears sure, but this is ridiculous.  Sleep deprivation compounded these feelings times, oh, a million I think.

I have had seasons like this before.  When Bailey started first grade, her first year away from me all day, I struggled very much.  Time moved on and so did I.  I will again.

I think I partly struggle because I'm just so in love.  How could I not be.  These years having young children have been difficult at times, but they are surely the best years of my life.  I know it.  That's why it's hard it's going so fast.

First day of kindergarten 

A few weeks ago, before her dance at school 

I'm so blessed to be a mom.  A lot of good, good stuff happens smack dab in the middle doesn't it though.  So I'm going to try extra, extra hard to look forward to middle school and not grieve for the end of elementary.  After all, I can't ignore the blessing that some cf kids never even see this age.  How thankful I am for her good health.  How thankful I am to have a great school system.  How thankful I am for all of these wonderful years and the years to come.  So no more tears (that's a lie).  But I am willing them to be tears of happiness and gratitude, not tears of sadness.

And lest we not forget....SUMMER IS HERE.  There is no sadness in summer!!!

hippie moderation

I have commitment problems, obviously.  I took a nice long blogging break, didn't I.  I commit to people just fine...well...mostly.  I do keep meaning to see my two best friends from high school.  But really, I start stuff all the time, only to either get distracted or quit.  Why do I do that?  Case in point - all of Bailey's pictures from her first 2 years of life are in boxes.  This is back where you had a point and shoot camera and you got film developed.  Seriously!  So there are a million pictures because I'd take a ton trying to get the perfect shot.  Why are they in boxes?  I kept meaning to scrapbook them as at the time, I was into scrapping. Somehow with a baby that ended up getting a life changing, world spinning medical diagnosis, I never got around to it and the pictures piled up (imagine that).  Then when Tate arrived on the scene I knew for sure I'd never scrapbook again in my whole entire life, and I slipped pictures into photo albums once a month.  Until a few years ago.  Now I have pictures in boxes, pictures on my phones, pictures on CDs, pictures on memory cards...but no pictures on a computer, I am not that tech savvy.  This is huge on my to-do list of 2015 and what I have done so far?  Very little.

Then there's my self project.  Every year I make a "commitment" to work on myself.  Take vitamins, drink lots of water...add lemon and heat it up while you're at it.  Exercise, cut sugar, flour, bad fats, GMO's, MSG, etc etc etc.  Lose a bunch of weight while gaining a ton of much needed self esteem.  

I tell myself I'll yell less at my kids.  They take my quiet voice and counting down from 10 in the bathroom as an invite to listen even less, whine a bunch more and it doesn't take long - like January 2 - until I am yelling down the stairs for them to LISTEN TO ME RIGHT NOW IF YOU DON'T GET UP HERE AND BRUSH YOUR TEETH AND YOUR HAIR BECAUSE SERIOUSLY YOU ARE NOT HOMELESS AND WHY ON EARTH ARE YOUR CEREAL BOWLS ON THE FLOOR WE DON'T HAVE A DOG AND ARE YOU FIGHTING OVER BARBIES AGAIN?!! YOU HAVE A MILLION BARBIES HOW CAN YOU BE FIGHTING OVER A BARBIE!!!

I put myself on a money budget and that kind of works just like my diet.  All it takes is one well stocked Home Goods to bring on a binge.  Then the guilt.  

So here's been my new thing (let's hope I commit to it).  I want a happy medium.  I want to live in "moderation" like all the hippies call it.  I want to work on myself without hating myself. 

Today, I don't have to work.  I cancelled my dentist appointment because my throat really hurts so I have the whole day to do what I want.  Guess what, I'm going to watch my DVR'd Grey's Anatomy and not feel guilty.  I'm going to do one thing towards the plethora of pictures.  I'm going to drink some hot lemon water but I'm going to eat rye toast with my egg.  Because it's not devil's food, it's delicious.  I'm going to vacuum and clean not because I have to but because I love having a clean house.  I'm going to write my family love notes for their pillows not out of guilt that I lost my ever loving shit a few days ago over bad attitudes and drama, but because I love them more than life itself. I'm going to take pictures at the school dance, bring Bailey a big thing of icy Gatorade because it will be too hot for her, discretely cry as I watch her twirl and laugh with her friends and her crush, and marvel at how Taylor owns a room when just a few years ago she didn't even want to be IN the room.  I'm going to take a nice long walk this morning and smell the flowering trees, not because I am trying FOR THE LOVE TO LOSE JUST ONE POUND THIS WEEK but because it is gorgeous out and it'd be a sin to not enjoy it.  

I want to love life more.  I want to love myself more.  I want to lay my head on the pillow at night and not think about what I didn't do that day, I want to thank God I HAD a day.   And I want to look forward to my next day, not dread it because of all I "have" to do, knowing I'll fall miserably short.   

And guess what else - I'm going to write in this blog again.  Sometime, I really will, I promise.  :)  

9

I have one more year with a child that is in the single digits.  NINE!!!  My baby turned 9 yesterday.  I really, truly, completely can not believe it.  I remember so vividly the days that seemed to DRAGGGGG on, and here we are at a place where time is flying.  I remember calling Kevin, "when are you going to be home?  Why'd you take THAT way, that way is longer!  What are you near now?  The Wawa?!  That is still 15 minutes away!!"  Yes, I was that wife.  I was that mom.  The mom that feels like she's drowning, and I only had 2 kids.  But Taylor cried for years (no exaggeration), plus I had a kid with medical needs (therefore even more to worry about) and it was really hard.  This very blog all began late one night, as a lifeline.  I thought if I could write-it-out, it'd be a sort of therapy.  And it was, and it is...and I guess I need less therapy because unfortunately I rarely write.  I should write more, as I really do like venting via typing.

But back to the birthday girl.

Taylor came to us much like Bailey did - as an exciting surprise.  Ok more like a HOW THE HELL DID THIS HAPPEN?!  That shock QUICKLY turned to joy and I will say to my dying day, God has given me the best presents I never asked for.  How thankful I am to Him, to always know what I need before I do.  And yes, I even feel that way about the baby that didn't stay.

When I got pregnant with Taylor, Bailey was only 15 months old.  Again, I was sick throughout my pregnancy, just as I was with Bailey.  They think it was because my hormone levels were so high - in fact they were so high that I had to have an internal ultrasound to check for "multiple fetus'" (SAY WHAT?!) early in my pregnancy.  I remember begging the ultrasound tech to tell me how many were in there, but she wasn't allowed, the doctor had to.  Finally I said, just blink for how many babies you see.  She turned the screen towards me and blinked once, and pointed to one dot.  Bless her.  I am sure we would have made due, and given thanks, for however many there were, but with a baby at home with CF, and possibly more on the way, I did feel overwhelmed.  And I have a small house!

We elected to have a repeat c-section with Taylor because not enough time had passed for me to forget the gory details of my birth with Bailey.  I walked in to Virtua on October 7, 2005, early in the morning, feeling so ready and so happy.  Taylor was born at 8:11am - our anniversary is 8/11 so I thought that was really neat.  We were both able to see her be born, something we did not take lightly since neither Kevin nor I saw Bailey.  They handed her to me, I was crying of course, and first I noticed she had Kevin's ears, and oh my the chin!!  She had a deep cleft in her chin, just like her daddy.  I remember saying, she doesn't look like Bailey!  As I had expected my second girl I guess to be a clone.  And I remember saying Thank you God over and over, and that she was so beautiful.  I still say thank you God, and I still say she is so beautiful, all the time, every day.

In the hospital, touched with a bit of jaundice, I said "you are just our perfect little sweet potato aren't you?  You're our Tater Tot" and it just stuck.  And it suits her.  She is my Hottie Tottie, my Tater Tot, my Taters.  She is JOY she is FUN she is a DELIGHT.  And typing these words is my delight, because there was a time I couldn't have said that honestly.

When Taylor was a week or two old, she started crying, for hours, every day.  She actually slept well at night, thank the good Lord as I think I would have "run crying for the hills" - an expression my mom uses.  Nothing we did brought her relief.  They said it was colic, then acid reflux....she grew older and was still crying so as a toddler we took her to CHOP for an x-ray and diagnostic testing (she was perfect), to an ENT (who said she had polyps on her vocal cords from all of her screaming/crying..hence her raspy voice...but was fine otherwise).  We took her for allergy testing (she is only allergic to white birch trees), we took her to a gastro-intestinal specialist.  Nothing was internally wrong with her that would be causing her pain.

One Sunday night in February of 2009, Taylor was 3 years old, I googled "behavioral therapy for toddlers in Marlton NJ" as I started to believe the people that were saying it was behavioral.  That she was just stronger than me, that she "ruled the roost."  I knew in my heart they were wrong, that something was wrong, but I really didn't think she was autistic so what was it?!  There at the top of my search was a listing for Sensational Kids in Marlton.  They were giving free workshops THAT VERY WEEK on sensory disorders.  I googled sensory disorder and I KNEW I found something.  I went the next evening to their workshop and cried my way through it.  It was Taylor, all of it. I felt the weight of the world on me, and yet the weight of the world lifted.  I felt such distress that HERE IT WAS THE WHOLE TIME and yet such relief that IT had a name.

We enrolled her immediately in therapy through Sensational Kids.  We then started the process of having her evaluated through the school system to get her services.  She went to Sensational Kids twice a week until the start of the school year in September, where she was to attend the disability pre-school.  She was in a class of 7 children with a special education teacher (I wanted her to move into my house but she said something about boundaries), 2 amazing aides, and she received speech, occupational and physical therapy.  What a great district we are blessed to live in.  She was in that classroom for 2 years, and then the disability kindergarten for half the day and "normal" for the other half.  Then for 1st, 2nd and now 3rd grade she has been and is in an inclusion class, containing both children that are "normal" and kids that need a bit of extra help.  Next year she will not be, as it was this year they really thought she was ready to move to normal.

When she was 3, and I toured the preschool for the first time, I remember walking into the school and seeing a group of children walking to recess.  One girl was in the back, all by herself.  I prayed, with tears streaming down my face, please God bless that girl.  And please, please God don't let my child be her.  Please help her so she can have friends.  I couldn't even envision Taylor caring about friends, as she only was bonded to her family and wanted nothing to do with anyone else.  Playdates were torture - she'd hide in the bathroom, under tables or cling to me around my neck, her face buried so she didn't even have to look at anyone.  Meanwhile my other kid LIVED for playdates.  I longed to be like the other mothers, children happily playing, seemingly not a care in the world as they sipped their coffee.   Instead I had one kid that had to do treatments twice a day because she had a beast in her body that they say will kill her, and another kid who cried incessantly and hated life.   I felt sorry for myself.

To say I am thankful for all of the services she has received to develop coping and social skills, is an understatement.  To say I am proud of my daughter is an understatement.  To say I am in love with my child is another understatement.  My heart is just bursting with gratitude and joy for this girl.  She has come so far, and taught me much along the way.  She taught me to trust my gut.  She taught me patience.  She taught me that God answers prayers in His time, in His way.  I still don't understand God...I know there are children for which it appears healing never comes.  I don't know why.  But for our family, in this instance, God led us to health for our child.  Because of this, I have more hope when I pray for healing for my other child.

When Taylor was 4, she had her first school dance.  She clung to me and wouldn't set a toe down.  She hid her eyes on my chest and covered her ears.  And cried.  I couldn't leave, as Bailey was having the time of her life.  As we often did, Kevin drove separately and so brought her home.  I remember watching her leave, her daddy carrying her, and being so sad.

Last year at the school dance Taylor had a little following of friends follow her around, and she won a dance contest.  SHE WON A DANCE CONTEST.   The same kid who wouldn't set a toe on the gym floor.

Healing.

I love you so much Tater Tot

11

My firstborn is about to be 11 years old.  Ahhhh.

At 23 years old, we thought we would wait longer having children.  Kevin and I were both working full time and taking masters classes.   I was pregnant with Bailey but didn't know it when we wrote up a "5 year plan" complete with what countries we'd visit (countries!!) on a weekend get-away in February of 2003.   Several days later, laying in my bed one morning counting how many days it had been since my last period (40-something), I decided I should take a test.  Ran to CVS and took it, then peeked at it while I was in the shower and promptly slipped and fell.  I still have a picture of the bruise from my hip from that fall.  I remember sitting on the shower floor, wondering if ALREADY I did something bad to my baby - I had gone snow tubing on our weekend away and now I fell?!

There was no cute way of telling the daddy.  I called him in a panic, my mom and best friend too.  Took a few more tests that day and swung by Labcorp for a blood test ordered by my doctor, who also got a panicked phone call.  I somehow managed to work, and I remember on my way home (can't remember if it was that day or the next?) I called the doctor's office AGAIN asking if they had the results yet.  The receptionist, who by now knew me and was laughing at me I am sure, said, "Hi Mommy" when I asked if the result was in yet.  I remember where I was, and I remember pulling over and crying.  By that point I was so happy.  I realized how much I wanted to be pregnant, regardless of our "plan."   This plan was better.

Pregnancy was not fun, as I was often sick, but I loved seeing my stomach grow and feel her move.  She was in utero how she is now...she'd find a spot and stay there, for a long time.  Sometimes I'd get nervous and try to bounce her around to feel her kick.  If someone wanted to feel her, by the time they'd put their hand on my stomach she was over it and not kicking anymore.

Our due date was October 18.  I had to see a specialist with Bailey because they thought I had a blood condition (which is why I wasn't on the pill - we practiced the "you can run but you can't hide" method).  In late September the specialist noticed my amniotic fluid level kept decreasing.  I wasn't leaking fluid, but there it was, less and less.  On October 2 I was admitted to be induced.  Kevin and I went to dinner first, I wore a nice outfit (why?) and checked in.  They put Cervadil in me and gave me Ambien, which didn't work I was up all night.  We played cards at one point I remember.  In the morning, her head hadn't even dropped, I hadn't dialated at all...we should have done a C-section.  But no...I took Bradley classes for 12 weeks, I wanted to go all natural.  I didn't want my baby having a drop of drug.

Shit got real.  A long story short (because I've already managed to go on and on) after a day of full pitocin, non stop contractions with no dialation, that evening I finally got an epidural.  Then I said my sorries and finally breathed.   A few hours later, her fluid even less, they said it wasn't a choice anymore, I had to do an emergency c-section.  I wasn't feeling well by this point (going through hell will do that to you) and had started to dry heave.  They ended up knocking me out, giving me general anesthesia to deliver.  It still breaks my heart that neither Kevin or I got to see our baby be born.  When I woke I was still so loopy but I faked being normal because I so desperately wanted to hold her.  She was so perfect.  She had Kevin's ears, thank goodness!!  And a perfect little face, little body... I just couldn't believe that something so perfect came out of me.

I was in love and I still am.  I still can't believe something so perfect came out of me.  I feel so honored that God used me as the vehicle to bring this amazing child into this world.  I can't believe she is mine still.

Her heel prick test came back flagged a few weeks later, for Cystic Fibrosis.  What is that?  Is that like CP, Cerebral Palsy?!  She looks perfect!  After we had gone home from delivering, we had to check back in for a night because of her bilirubin count.  I thought THAT was hard!  They had to access her vein at the top of her head, I had to fight to continue breast feeding, I had to see her be in an incubator, not my arms.  But this, this was hard.  Researching CF, taking her to get 3 sweat tests done, all inconclusive, before finally getting a blood test done (that is more expensive so of course insurance didn't want to do it first).  Then the call.  Holding my baby, saying over and over, "but she's perfect!  She looks perfect!"

I still do that sometimes.  I don't hold her while I say that, cry that I should say, but in my head, in my heart, I still fight her diagnosis.  But she's perfect, she looks perfect.  Not my baby please God not my baby.

But then I see her, I really see her, not through eyes of fear.  I see the delightful child she was, and the young woman she is becoming.  I see her youthful spirit but a wisdom beyond her years.  I see a girl that says I have CF but CF doesn't have me.  She is strong, she is kind, she is able, she is here.

She is mine.

Happy birthday love.  Thank you for being my girl.  Thank you for being my teacher, my hand-holder, my inspiration.  I love you so much it hurts.

11 years.  Thank you God.

double duty

I actually wrote for over an hour, composing a blog post that is not even done.   I started to get overwhelmed with it, so I saved it and here I am going to write about something else entirely.

Double duty meals.

I was talking with a few girlfriends this weekend about how much I love prepping and cooking meals.  My habit is to do bigger shopping trips every other week, with a weekly catch up trip for that week's deals with coupons and fresh produce.  They were surprised I think with how much I like it, but in thinking about it, I realized it's because I feel efficient and productive.  And I love when my family enjoys what I make.  My dream is to have an entire weeks worth of meals that all 4 of us eat happily, with no complaint.  But as it is, half the time I make the kids something else or they eat cereal.  I have bigger battles, people.

So here is our menu for the week.  I double duty almost everything I ever make.  Meaning whatever I cook, I plan a different meal out of the leftovers.

Monday - creamy homemade chicken soup.  I used leftover rotisserie chicken, that was from a meal I had served last week of chicken, potatoes, veggies.  I froze the chicken along with the veggies.  So today I made a roux of butter, diced onion and flour, added homemade broth and milk, tossed in leftover brown rice and the frozen chicken and veggies.  Took 15 minutes start to finish and it's ready to reheat tonight.  I made this meal this morning as I cleaned the kitchen from breakfast.  The kids will eat this but will pick out and bitch about all the veggies.  They will also have banana or applesauce and I'll make biscuits.

Tuesday - spicy italian chicken sausage links in homemade tomato sauce, pasta and salad.  I'll double the sauce so I have leftovers, and cook more sausage than we need, reserving for later this week.  The kids will not have any sausage, they only eat chicken, eggs and fish sticks.  If one morsel of the sausage gets in their mouths they'll gag and cry.  So they'll have plain pasta and use jarred tomato sauce bc mine is too full of "chunks" for their taste.

Wednesday - shredded bbq pork in the crockpot, cole slaw (for me - no one else will eat this), roasted potatoes.  The kids will have something else, not sure what, but quick and not heavy bc Tate has softball. Will make extra pork, remove before adding sauce and freeze it.

Thursday - Sausage sandwiches using the leftover sausage, adding roasted onions, mushrooms and red peppers.  I used these ingredients in my sauce earlier in the week and saved some to roast.  Fresh rolls, with cheese for Kevin.  Rest of the salad from Tuesday as the side.  Breakfast for dinner for kids - eggs, toast, turkey bacon.   Bailey can cook the breakfast mostly by herself and she will be happy I'm not crowding her bc I really only need to saute the veggies and toast the rolls for Kevin and I.  She will, however, complain about the smell of the peppers and onions.  Another softball night, so it's good this will take 20 minutes if that.

Friday -  SOFTBALL AGAIN.  Will feed kids before softball but Kevin and I will do a date-night-in when they go to bed.  I have steak in the freezer, I will throw it on the grill with asparagus (if it's not too expensive at the store today - substitute is frozen green beans) and cook slices of leftover cooked potato from Wednesday.  Reserve rest of steak for wraps during the weekend.   Meal will take only a few minutes to prepare.

Almost every single time I make meat I think about how I can use it again for something different.  Really, I do that with a lot of ingredients like fresh veggies, rice, pasta.  I plan a broad menu plan each month, meaning I plan what meals we want to have based on sales and items we already have, but I don't plug it into a day of the week until each Monday morning beforehand.  Weekends I don't plan, we have leftovers, eat out or eat quick things like grilled cheese and tomato soup.

So there it is - I filled my blog post goal for today of actually posting something, and avoided the emotional toll the other post was taking on me :)  Win-win.

things I write about

So basically this blog is about -

motherhood.  all of it.  the good, the bad, the ugly and the funny.

Bailey's Cystic Fibrosis and Taylor's SPD - their trials and their victories over these "special needs."

my marriage.

my faith.

my weight.

friendship.

couponing.

I think that's it, seriously.  I am a part time social worker by profession and although I have lots of great stories, I don't feel comfortable sharing, even with fake names.  It's a shame...also, I have a lot of great family stories but I think I would get in trouble.  Like, deep, deep trouble.  I wouldn't want my finer moments written down in a blog (even if only 5 people read it) so I get it.  The older the girls get, the more I am starting to become mindful of this for them too.

So here, on this Monday morning, what do I have to write about.  We had a delayed opening due to snow (which is so pretty, I am trying to see the positive in it).  This past weekend was awesome, with lots of playing, great weather, great friends, good food, wonderful service at church, precious family time.  I have nothing to complain about today (other than my back which is killing me, Bailey and I are seeing the chiro tonight thank goodness).  I feel really, really blessed knowing I kissed my husband off to a job that supports us, my children off to a school where I know they are taught and loved.   I know so many others today are hurting...and I am grievous that there is such pain in this world.  It finds all of us, at different times, in different ways.  Today is not my day for sorrow, and for that I am thankful.

I hope that you have a good day today.  What do you want me to write about?  If someone lets me know a topic, I will write on that.

xoxo

facing fears

What are you scared of?

I can list several things right off the top of my head.  Losing my children is #1, by far.  That really goes without saying.  Sometimes, my mind wanders, and the nightmares that I know other people have experienced in this life renders me sick to my stomach and leaving me basically begging God to spare us that.   Because of Bailey's CF, I think about this more than I'd like to.  This past year I have joined a few CF facebook groups, for information and fellowship, but at times I wonder if I should leave the groups, as often there are postings about children, teens and adults who have lost their battle to CF.  Yes, my biggest fear is living through the loss of either of the 2 best things that have ever happened to me.  Losing Kevin too is a fear that makes me ill to think of it.  He's my best friend, beloved husband, team mate, sweetheart.   I will only be able to handle losing him if I myself am senile, and I wonder what happened to the nice old man that used to be my roommate?

I have far less serious fears too, relatively anyway.  Fears like what if my girls move far away from me?  What if they don't get along as adults?  What if I can't handle having an empty nest and I actually do lose my mind?  What if I can never lose this weight?  What if we can't help the kids afford college and weddings?  Will we ever not owe CHOP money, and will Bailey be able to always have affordable healthcare?  What if Parenthood/Greys Anatomy/Law and Order/Modern Family goes off the air?

And the one that has been plaguing me as of late...what if I make the wrong choice.

I am really wondering about next steps.  I feel like God has been showing me over and over that He has something else planned for me.  But I don't know exactly what or how or when.  It's scary!  I think I know what I need to do, want to do, but I'm scared I'll make the wrong move and regret it.

God keeps showing me signs.  He doesn't have to, but He is.  I can just picture Him up there, thinking "oh for the love of myself, when will this girl get it?!"  But I'm scared.

So in my quest to take on some life changes this year, I am going to try really hard to be less fearful.  To not double check my parachute 5,000 times before jumping.

resolution rehash

So we are almost 2 years into 2014 and for the first time EVER I actually stuck (so far) to a few of my resolutions!  Or goals, I should say.  I am excited about one in particular that I want to share with you!  But I'm getting ahead of myself.

Basically, in January I wanted to work on some things in my life, but I did a quick recap of how change has gone over in my past 34 years.

Not well.

So I figured that the only way change (and picture me whispering it like it's a bad word) would work for me was to take things one.small.thing.at.a.time.  I broke things down into categories - spiritual, physical, emotional, relational.  And decided that I would just really work on one little thing at a time, in one category at a time.  I'd do something for a month, reevaluate, and then add another change.

In January, I swapped my coffee for tea.  EPIC FAIL.  I gave it a whole month, which I was really, really proud of myself for, because it was so hard.  Not hard as in "I have a child with a genetic life-shortening disease" kind of hard - that is actually hard.  But really, it was difficult!!  I decided to do this, under the "physical" category, because although I take my tea black, I use sugar in my coffee.  This was a decision that I felt bad about, every single day.  I felt like it got my day off to a bad start.

You know what got my day off to a bad start?  Giving up coffee.  You know what else?  It got everyone else's day off to a bad start! (Read - kids and man.  I pretended for everyone else).

Kevin - "Brynn, how can you be in a bad mood at 7:30am?  The day just started!"

Brynn - "**** off Kevin!!!"

No need for ANY comments about coffee vs tea.  I posted about this on fb and the post blew up with comments and I just wasn't expecting that.  No need for concern either - I have now happily switched back to coffee.  My family practically threw me a party.  With balloons and streamers.

But there was something we did in January that not only has stuck, I am so happy about it!  I didn't internalize it as a "change" but it really is, and a big one.  For YEARS, at least 10, Kevin and I have used a credit card to pay as many bills as we can, and then we pay it off every month.  There were a few times over the years we couldn't, but for the most part we've had no credit card debt.  We used it for everything.  Groceries, gym membership, gas.  Everything.  The plus was we were earning money back, as our credit card gives 1% back and then quarterly 5% on selected things.  But the downside was I KNEW we were spending too much.  I knew that if we switched over to a cash budget, we'd save money, because really, the only way we were saving money was a few times a year if Kevin got a bonus, not on a monthly basis.  All of our money was being spent each month.  And over the past year I had started to feel convicted about it.  But I wondered how to do it, as really, to switch over to a cash budget I had to have more cash at hand first.  It's confusing but that's how it was, because we had a credit card bill to pay the next month AND need cash for groceries, gas, etc.

We were blessed in December with some additional income from Kevin's job.  I knew it was time!  I looked over bills from the past year, and made a budget.  I wanted it to be realistic because if it was too tight, we'd go right back to the credit card.  But if it was using every penny we had, then what's the point,

We have not only stuck to our budget over the last two months but we had enough to put some in the bank and also bought a new reclining couch and recliner chair for the playroom!  I am thrilled.  We have a set amount we use per month and then any extra at the end of the month will be a bonus.  Sometimes it's been unpleasant...like it is right now, the end of the month.  And last month I ended up selling a bunch of stuff from around the house to be able to go to the grocery store, as I had spent all of our grocery money already.  (Darn you Whole Foods!) But seeing how our savings could add up over the year, and have some money to make some small home improvements, is a great feeling.  Both Kevin and my income vary, sometimes widely, so I know some months we will just squeak by, even on a cash budget, while other months are more comfortable.

I wish I had done this many years ago, but for many, many years we were house poor.  Using a credit card was just how we paid bills, that was our system.  I stayed at home with the kids, making a few bucks babysitting or working in our church infant room.  Kevin's job has been a blessing all of these years as he has provided for us, but it's sales...in a recession.  We had particle board cabinets, people.  And I was grateful for those cabinets.  I was grateful for my cozy house....with furniture we bought 13 years ago that 2 kids, 3 cats and a dog put to DEATH.   So it felt awesome to get a new couch and chair...oddly enough no one took the old ones by the curb...was it the fact that the chair was in 2 pieces with stuffing spilling out of it and the couch had multicolor stains and rips all over it?

Anyway, to recap, switching from coffee to tea SUCKS but using cash to buy stuff ROCKS.

How are you guys doing with any resolutions/goals?  I'd love to hear a story of success or "this resolution is for the BIRDS someone pass me an oreo STAT."

an apology that goes nowhere

Sorry friends.  I am really inconsistent with this blog.  I could promise to update more often, but like my desire to cut out carbs, that will probably not happen any time soon.  BUT I do hope life settles down for me in a few months - I have hope that it will and no, we're not farming out our kids elsewhere, they'll remain in my care until they marry and move across the street - what was I going to say I forget.  Thinking about my kids ever moving out puts a fog across my brain.

So what have you guys been up to?  Snow shoveling?  Snowmen?  Snowfights...you know the kind...where one kid gets another kid wet in the face and everyone comes inside crying?  Never-ending laundry from wet snowsuits and a million outfit changes because the kids have been home it feels since CHRISTMAS?  Managing sibling stress, managing your job, managing to keep your sanity?

Yeah me too.  I don't know about you, but since Christmas I have felt one step behind.  You'd think that with the extra snow days and time at home I'd feel ahead of the game.  In fact, a teacher at my girls' school commented that she had nothing (said with great zeal) left to organize in her house after being trapped at home.  My house now needs EXTRA organizing after these last 2 months!  I wish we were buddies I could invite the Bored Teacher over for some organizing fun.

Oh well it's no matter really.

So what else...well Bailey had a check up a few weeks ago and got a great report!  Despite having a cold her lung health is continuing to improve after The Great Decline of 2013.  Aka hell.  We are SO thankful, so very very thankful.  The Great Decline deepened my appreciation of how healthy she has been all these years, and my desire to find ways to keep her healthy.  So actually I became a Young Living Essential Oils distributor.  I only became one to get our oils cheaper, but I have been thinking maybe I will try to share what I will learn with others and perhaps have a teeny tiny business out of it.

We'll see.  That may fall under the heading "Just Like Cutting Out Carbs" and go nowhere also.  But I DO follow through with some things, I do!  I have maintained perfect attendance for every single episode of Parenthood.  I faithfully show up for as many girls nights out as I can.  I peruse facebook every.single.day.  Just so you don't think I'm a slacker.

Ok kids, I'm committing to another blog entry next week.  Should I write about the puberty movie I had to watch last night that Bailey will see at school in a few months?  I had to take notes.  And I will now need therapy.  (Can someone please freeze time so I don't have to face this stuff?)  Or should I write what I think about Selena's rehab?  (spoiler - I don't believe it and I wish I could invite her for dinner but for some reason she didn't give me her cell number).  How about I tell you that I have returned to couponing and for my grocery bill yesterday I saved over $100 and spent $87, plus getting $15 in coupons to use next week?   Well I just told you the whole thing so that's out.   Hmmm...what else can I talk about...

I'll think of something and meet you back here next week.  xoxo

all over the place

Yesterday, in the same day, I was happy and sad.

I think that happens to many of us women.  Our emotions are all over the place sometimes.  A rollercoaster.

Earlier in the day I held my baby nephew and remembered things about my own girls' infancies.  The good and the bad.  It was bittersweet.  Holding my nephew, my godson, is a precious, precious gift.  And yet sometimes it can hurt.  I can't turn back time, ever, and hold my own babies again.  I can't ever hold the one I lost.  I think I will feel this way until the day I die...loving where I am in the moment, but conscious that another moment will never come again.

I just lost you.  I'm a nutjob.

Anyway, after school the girls had dental check ups.  It went so great!  As I sat by myself in the waiting room I flash-backed to earlier checkups with Taylor, when I had to basically restrain her as she laid on top of me for the five minutes it took the dentist to check her mouth.

please.hurry.for.the.love.of.God.I.can.only.hold.her.back.for.so.long.

She was always stronger than me even as a young babe.

So I felt content.  I thought to myself, "see self, it's not so bad having older kids."

Then we went to Chick Fil A, as is our tradition after dental appointments.  What...you don't let your kids eat crap after getting their teeth cleaned?

It was crowded with other bad mamas (that is a JOKE) and the playroom was full.  All of a sudden I realized Bailey was really too big to go in there.  Probably Taylor too.  We went back to wash our hands first and I prepped the girls.  See, Bailey is really a youthful child.  She would gladly still play in the CFA playroom.  She is in no rush to grow up and in fact, gets sad about it.  I told them they are big girls, probably too big for that playroom.  Bailey said it was just like the Shop Rite playroom, when you get big you can't go in there but she wishes she could.  Taylor just listened.  Then we checked their height on the playroom door, Tate was a smidge under but Bailey was SO over the limit.  She took it in stride.  My heart burst with sadness that this part of our little life was over, and also pride over my girls standing there, hugging each other, because Taylor said then she wouldn't play either.  They walked, arms around each other, to a nearby table and we decided on what to get for dinner.

So I had this weird all-over-the-place kind of thing going on.  For years when the girls were little we would come to CFA to meet friends...the kids would play the moms would talk and laugh, interrupted every other minute by our children needing our help.  I look at those tables that are outside the playroom and I can just see it.  All those memories.  They are not very important memories in the scheme of things, but it was just part of our stay-at-home little life we had for awhile.  Me and the girls.  Going to the library, Barnes and Noble and Borders story times, Mommy and Me swim, going to the playground and to friends houses.   I see these memories all the time, and it's bittersweet.  I drive by a playground that's "too little" so we don't go there anymore and I get a lump in my throat.  I remember packing lunches and sitting under the tree.  I remember swinging Taylor on my lap and I remember Bailey "catching" her sister come down the slide.

I cry just writing this.  I'm a mess, people.  So you think I haven't forgotten all the tough moments of having littles, I really haven't.  I remember spending long amounts of time with Taylor in bathrooms because she couldn't talk all the *whatever* of wherever we were.  I remember pawning Bailey off to other moms at the library story time bc Taylor didn't like it and I had to chase her around the library, the whole time worried that Bailey would think Taylor got more attention than she did, and resentful I couldn't be like all the other moms with both kids on my lap acting normal.  I remember the many, many times we couldn't go out to these places because either Bailey was so constipated she wouldn't get off the couch, her little toes curled in distress, or because Taylor was just too not-into-it.  I remember that.  But it doesn't matter.  All the good, all the fun, all the precious, that's what matters to me now.  The bad just makes it that much sweeter, because we got through it.  (We're still getting through it, note to self.  Girls aren't grown yet!)  I've written about this topic before, and I will again, because for some reason, this kids-growing-up-and-it-feels-growing-away thing really affects me.

But you know what - I really was so proud of my big girls.  Because they're growing up they handled it so well.  And they were rewarded, because after they ate, the playroom was empty and they played for a few minutes.  Taylor went first, and Bailey and I sat at the table together.  Bailey mentioned a few things about growing older that is good.

I told her the best is yet to come, even if maybe I don't totally believe it.

change

In the scheme of things, this is a very, very minute detail in my life, but here it is.

I am switching from coffee to tea.

Not to say I won't enjoy a hot coffee with friends at a coffeehouse, or with my mom when she sleeps over and we both get up early.  But in my normal daily life, I am giving it up.  I add cream and sugar to my coffee, while I take tea black or with a bit of local honey.  I think the cream and sugar is a bad way to start my day, and only leads me towards more bad choices.

I have a very hard time giving things up.  Even when it's not working for me.  I don't know why I struggle so much with some things that are so easy for others.  Like losing 5 lbs.  I am so addicted to temporal things.

Every day of every week of every month of every year I think about my weight.  If you have read past blog posts on this subject, I have been pretty open with that area in my life.  I am open because I know I'm not the only one.  My dream job, since I was a teenager, would be working with people who are very obese, because in my mind there's not much difference between 225lbs and 525lbs.  It's excess, it's a stronghold, it's a burden.  And I get it, and I want to help.  But all these years later, I still haven't been able to help myself.

Something happens in the mind, I can not explain it to someone who doesn't have an addiction, but if you do, you understand.  You KNOW what you should and shouldn't do.  And yet when that - for lack of a better word - urge, comes over you, you indulge it.  "It" doesn't matter if it's a bagel or a cigarette or a drink.  You want it so much that all of the reasons to not have it, do not bear enough importance.  "It" causes damage, to the body, spirit and mind.  For me, my addiction to food makes me feel like a horrible person, and I know I'm not.  But that's how it makes me feel.

So because years have gone by and I've only been successful with losing weight a few times, I'm over it.  I'm over thinking about it, obsessing, counting, crying.  I'm over it.  I have to start so small, and not think about anything else but that one small thing.  Then maybe I can add one more small thing.  I'm not making any resolutions, because I never sustain them.  In 2014 I want health - physical, mental, spiritual.  I want health for me and for my family.  And making changes makes me overwhelmed, for I fear failure like it was a rabid beast.  So I'm starting really, really small.

One small thing.  Coffee to tea.
 

I'm back

Miss me?

The last I left off, we were checking into the hospital for Bailey's first CF admission.

Reading together on Taylor's birthday, October 7, the night before we checked in.

I thought often about writing a blog post to document what has happened since then, but I just couldn't.  I didn't want to come back to this blog and see the last entry I wrote.  It was such a sad, sad time for us as a family, those few months before Bailey's admission.  We tried so desperately to improve her lung function at home.  We were consumed with her CF and how to help her, and it didn't work.  The doctor thought it was time for an admission for a CF "tune-up" where they administer heavy-duty meds to try and kill the bacteria that is most likely the cause of a lung infection and decreasing lung function.

This was taken after she finally came out of her sedation stupor.  Bailey had to go under sedation for them to surgically place a PICC line so that she didn't have to keep getting IV's placed in her arm.  The blessing was she received her PICC the very next morning after she checked in...some kids wait days.  She had no side effect other than the sedation made her act like a sad drunk.  As a mother it was heartbreaking because she kept trying to tell me something as she cried but I couldn't understand her words.  She was so frustrated and kept crying to me and I couldn't make sense of it.
 I was so thankful when she came to.  Now that I know what to expect next time won't be so bad.  

Fast forward...

The hospitalization didn't work, she got worse.  All told, from the start to her decline to the end of her hospitalization she lost 20% lung function which is quite significant.  Not to mention we didn't know if she would even further decline, how do we stop this freight train?!

But.  There's always a but, right?  A lot has happened in these last few months, good and bad.  And I am focused on the good, because the good is wonderful, and life will be awfully hard if we always focus on the bad.  I tend to, as a natural worrier.  But I am trying to change, and always see the good first.

Can you tell she'd been crying?  My sister in law made a huge box for Bailey of gifts that "every time you need a
boost, open a present."  Bailey needed a boost after her first dose of IV's!  This box - along with all of the other gifts, cards, meals, texts, calls...were one of the "good" things we experienced while at CHOP.  

So some good is...we became even closer as a family.  In particular, there was one very rough morning in the hospital that Bailey and I shared.   We were clinging to each other in her bed and crying, we were exhausted, fearful, in pain.  But from that we had a very deep talk that I will always hold dear in my heart.  My girl and me, coping, sharing, suffering, healing.  All at once.  We were both struggling with why Bailey has CF at all, why is this her trial. Why were her friends right then getting ready for school and she was hooked up to an IV pole unable to leave her room.  I said I didn't know.  I'll never know.  But the Bible doesn't say we were created to have fun, comfortable lives.  As a parent of course we want that for our kids.  But God knows more.  He knows what helps us to be the people He knows we can be, and He knows what will advance His kingdom.  Bailey and I really rested on the assurance that God loves us and we don't have to understand how He works to know that He loves.  That is the fact the Bible DOES tell us, over and over.  To know that Bailey was going through a trial, and analyzing her faith, and becoming an even stronger believer through it was beautiful to see, and it helped me with my own belief.  I confessed to Bailey that I have been a fair weather friend with God at times.  When my blessings are easy to see I am full of gratitude and shout His name with praise.  But when I am deep in hardship, as watching your child suffer is a hardship, I question Him and doubt His goodness.  I wonder where He is and how He chooses who to help.  What I need to remember is that His blessings may be harder to see but they are always there.  He is always working for good, even when we can't see it and that's when faith comes in.

I was also able to see a side of Taylor as a sister that warmed my heart.  Taylor didn't have empathy as a toddler, we had to painstakingly teach her to care about others and be selfless at times.  Well, she certainly has empathy now.  I am so grateful to see her deep love, care and affection for her beloved sister.

I had an even deeper appreciation for Kevin as a father, husband, provider.    He worked very hard while also taking care of Taylor and trying to see Bailey as often as he could.  He didn't blink twice when I said I wouldn't be working during this time and would therefore not be bringing in any money.  Kevin always has a servant's heart, he is always first to offer to help.  But during our hospital stay he was even more gracious, more helpful.  I fell in love with him more.

What else good happened...well, did you hear we met Selena Gomez?

What a silver lining that was.  The power of social media!   After Bailey's first week in the hospital, I traded with Kevin and went home for the weekend to be with Taylor.  Driving back to CHOP on Sunday night, I was thinking of our upcoming Selena concert that Friday.  My in-laws gifted the girls tickets to Selena's concert as their birthday gift and we were so thankful CHOP grants one-time passes during hospitalizations if you're healthy enough.  Bailey would be allowed out for the concert.  I was thinking wouldn't it be neat if Bailey got to meet her.  I envisioned her going back to school not as the "sick kid" but as the girl who met Selena Gomez.  Cool.  I called my father-in-law, knowing that they know someone that works at CHOP.  That was a dead end.  But I went to sleep thinking about how things can go viral quickly on the internet...it was a long shot.  I didn't even have a Twitter account.  The next day, I wrote on facebook how I thought it'd be so neat to meet Selena.  A friend (shout out - Grace!) suggested I write to Fox29 and another friend (shout out- Lil!) made a facebook page "Help Bailey Meet Selena Gomez This Friday Night".  I started a Twitter account and tagged Selena asking if Bailey could meet her.

Within an hour or so, Fox29 emailed me and people were sharing my tweet, sharing the facebook page...very quickly this was becoming something.  Fox29 came to the hospital to interview me, and they shared pictures and a video of the girls.

One of the pictures Fox29 aired.  Bailey and I spent a long time talking about this.  I worried about sharing her picture for all the world to see.  I felt that she was vulnerable.  But Bailey was adamant that she wanted to be a "CF face" and if it could help her meet Selena, she wanted to do it.  I agreed that it was an opportunity to raise awareness about CF.  In this picture you can see her PICC, it's that tube thing sticking out of her right arm.  She is also wearing her Chest Percussion Therapy Vest, which basically shakes her to try and thin her mucus around her lungs and organs.

No I'm not adding a picture of me because the fact that I was unshowered and
already on television is enough. But when tv calls, you go.  It was an opportunity I couldn't miss,
even though I desperately wished I had washed my hair that day!

What was happening?!  It was amazing.  Word got to Selena and she said yes!  Her production manager called me on Tuesday evening, I didn't believe at first it was him.  He said, "we heard about your daughter...Selena's stepfather heard, and I am from Philly, so I heard from several people 'hey there's this little girl from South Jersey you gotta help her out'.  So we are and would love for you to meet Selena on Friday night".   I thanked him profusely as my heart raced and I just kept thinking "I can't believe it!"  What I couldn't believe wasn't just that we were meeting a rock star.  I couldn't believe how quickly word spread, and that many people cared.  But they did, so many people cared.  It was heartwarming, and I will keep that feeling with me always.

The rest of that week was a blur of treatments, IVs, tests, surviving, thriving, anticipation, excitement.  We found out a local limo driver wanted to donate his time that evening to our family and take us to the concert.  The girls were almost as excited about riding in a limo for the first time as meeting Selena I think!

The morning of the concert Kevin stayed with Bailey while I went to the salon with Taylor.  We had our hair blown out and got mani/pedis.

We both cried a little together that Bailey wasn't with us, and chose new polish to bring to her at the hospital.  Meanwhile back at CHOP Bailey's fabulous nurse a few days prior had figured out how to precisely time everything so Bailey wouldn't miss an IV dose. We were going to take her oral meds with us to the concert and right before leaving get hooked up to the IV and then again as soon as we got back.  This took a few days to adjust because her meds were every 6 hours and her normal dosing time was right smack in the middle of the concert time.  Her nurse gradually moved the dosing and it worked perfectly.  As she received her last dose my mom and I did her hair and nails.  Fox29 showed up, the grandparents waved us off and we were on our way in the shiny black Escalade to meet Selena.

Carey Limo Service - Joe Reiber - THANK YOU!!!!  A true treat for my girls.

The girls with Shawnette Wilson who was so fabulous!  

We arrived at 4-something.  We checked in and were told a man would call us when she was ready.  Although I was nervous that we had gotten there too early and would have to leave before the concert ended for B's medicine, it ended up being perfect. Bailey and Taylor had the chance to enjoy the sunshine, it was Bailey's first time out of her hospital room in 10 days and Taylor had really missed playing with her sister.  Feeling the sun on our faces, hearing my girls' laughter I thought, "I don't need anything else, this is gift enough.  Thank you God."  We needed that refreshment, that reprieve.  It felt so good.

We had SUCH JOY.

At 5-something we were called in.  We walked with 2 security guys who were so nice.  We took the elevator to the bottom floor and waited for a few minutes outside her dressing room.  We were so excited!

Then her cousin came out to get us.  We followed her through an area that had tons of clothes labeled and on the floor.  Then back to her dressing room, which was lit only by a few candles and there was Selena with a big smile.  Friends, she couldn't have been more lovely.  My girls ran to her and she hugged both of them, genuinely.

I only used my Iphone to take pics.  I didn't want to look like a crazy fan.   And then I didn't put on my flash because I didn't want to disrupt the calm, peaceful vibe she had going.  So a lot of my pictures were dark.

She was kind, she was humble, she was gracious.  She spent a lot of time looking at what the girls had made for her and the dog toys.  She signed our CD's and tickets and we talked about our favorite songs she sings.  Taylor remarked that she used to date Justin Bieber (she pronounces it Beaver and I've never corrected her but I don't think Selena noticed) and Selena laughed and said she did for 2 years but that you girls have lots of time before dating.  She also laughed when Tate sat on the floor and started writing her own name on the CD cover Selena was signing.  We joked Taylor could go on tour with her and sign autographs.  Bailey had the biggest puppy dog eyes for her, and happiness just glowed off her face.  I choked up, and Taylor admonished me reminding me I promised her I wouldn't ugly-cry in front of Selena.  Selena and her cousin laughed and said all moms cry sometimes and it's a good thing.  We took pictures, which thankfully her cousin turned the lights on for.  Bailey showed Selena her PICC line and Selena so gently held Bailey's arm.  Selena told her to stay strong and she'd be ok.  I told Selena I thought she was a great role model as I had read of many wonderful things she's done.  I asked her to stay young, stay sweet.  Selena told the girls she hoped they like the concert and thanked us for thinking of her doggies.  We hugged goodbye and said our thank you's and she was off.

Her concert was amazing.  I won't lie to you - I was nervous.  She is a rock star after all, and I think of myself as a more conservative parent.  But she was appropriate and a few times she spoke to her audience in a very positive way, encouraging her tweens and teens to stay true to themselves, be strong, be lovely.  It was a good message.

Towards the end Bailey couldn't keep her eyes open, as a side effect of one of her drugs and lack of sleep had led to painful, bloodshot eyes.  I held her in my lap, praying for her, and thanking God for this night.  At the end of the concert Kevin carried her all the way to the limo.  At 10 years old she is a big girl now, but he did it and it warmed my heart to see my baby still be able to be carried by her daddy.

We raced back and she was immediately hooked up to the IV.  I noticed the nurse wore a mask, which no one had done previously.  I knew Bailey's throat culture had come back, and I assumed then that meant she cultured a bad CF bug  My heart dropped.  I wondered if I wanted to know what it was, after having such a great night, getting such bad news.  But I had to know.  The nurse looked it up in the computer and said, "normal flora" and I almost dropped to my knees.  She remarked that she hadn't looked it up, for some reason she thought Bailey's culture had one of the bugs they mask for, but it didn't.  I gave thanks to God for such wonderful news on that wonderful night.

Bailey was released the following Tuesday, after 2 weeks in.  We decided to take her off 2 drugs and see what happened after 5 more days.  She was the same, and we were all heartbroken.  We chose to continue with our planned Disney vacation and return afterwards.  Bailey was scheduled for testing as part of the drug study she had taken part in and was ending.  If her lung function was still low we'd get a CT scan and a bronchoscopy in the hope of finding the cause of her decline.

SHE WENT BACK UP!!!  Not the full 20%, so not where we need to be yet, but she's on her way.  She's back up about 10% and we are praying that when we return in January she is up even more.  We avoided another hospitalization and the testing.

I am so thankful we are home for the holidays.  She was back at school for class pictures, she went trick or treating as a princess cat, she was at our table for Thanksgiving, she played with her cousin and welcomed another cousin into our family.  She went to a birthday party, she went sledding, she went to school, to church, to the mall to see Santa.  She played with her sister, she played with her friends, we went swimming together at the gym.  She has her chorus concert today; she has a solo.  She is wearing the blouse she met Selena in, and has her head held high.

Sometimes through the difficulties we face, we are enlightened to our blessings in a more special way.  Every night since they were born I have checked on my girls as they sleep.  I kiss their cheek, I whisper I love you.  I stand at the doorway where I can see into both of them and as I shut their doors I feel peaceful and thankful.  This emotion has heightened to extreme gratitude that I have both of my babies warm and cozy in their own beds.  Safe, healthy, happy.  Thank you God.

And thank you to all of you, for caring so much about us.  We love you dearly.  We received an outpouring of love and every single one of you that gave to us, in whatever way, we are thankful.  Team Bailey raised well over $7000 this year for the Cystic Fibrosis Foundation!  That is our highest amount raised to date, even higher than our first year walking when Bailey was just 6 months old.  I know that whenever we give of our hard-earned money, we hope that it is being put to good use.  Let me assure you it is!  Because of the CFF, the median life span is now 41 years old for a CF patient.  When Bailey was a baby the age was in the young 30's.    Before the CFF existed, CF was a death sentence to most, as an infant or young toddler.  Now a very young child dying is the exception, not the rule.  But we want it to never happen, so the CFF is tirelessly trying to develop more therapies and what we really hope for - a cure.  So thank you, supporters of Team Bailey, and thank you to everyone who loved on us lavishly during that hard time.

May you be blessed in return, and know you are loved.

Merry Christmas.