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.