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.

the other shoe

When Bailey was born, we thought she was "perfect."  I remember shortly after we brought her home, we needed to stay the night at a different hospital because her bilirubin level was still too high.  We brought her in and they couldn't get a vein anywhere but her sweet little round head.  My hormones must not have helped, but I cried like there was no tomorrow.  I felt helpless, scared and all I wanted to do was take my baby home and hold her in my arms, not sit next to an incubator.

Once again home, I counted my blessings to have a healthy, beautiful baby.  She ate, slept, grew... she really was "perfect."

When Bailey was a few weeks old, I remember laying on the floor in our condo living room, as she laid on her sheep pillow mat beside me.  The phone was right there, as I often talked to my mom.  Our pediatrician's office called, and told me Bailey's heel prick test came back "flagged" for CF.  I sat up, my heart tight, my stomach immediately sick.  What is CF?  Is that like Cerebral Palsy (CP)?  Is my baby ok, what is going on?  I had not even really registered that she had a heel prick test, as I wasn't even conscious when she was born...literally I had been under general anesthesia due to complications. So to say I hadn't even given it a thought is an understatement.

The days were a blur of doctor visits, panic, late night research on my computer.  I remember licking her trying to see if she did in fact taste like salt, as that is how they used to diagnosis CF.  I couldn't tell...how salty is a baby supposed to taste?!  Bailey had 3 sweat tests all yielded lower borderline results.  A sweat test is when they strap a band around your arm which sends electrodes through the skin to make it sweat, they then measure the salt content in the sweat and high salt is indicative of CF.  In the meantime Kevin and I got tested to see if we were both carriers, which we were.  Knowing our mutations then, we had them do a blood test on Bailey to see if she carried both those genes.

In early December 2003 we found out Bailey did in fact have CF.  I paced the condo crying out.  I held her tightly to me and begged God to please please please take it from her and make her healthy.  Please don't let her be sick, please don't let her die.  Please please please.  Please let her be perfect, this sweet little baby who doesn't deserve this.  Please.

CF is a disease that affects the lungs and surrounding organs.  It's progressive but usually right from the start a CF person displays symptoms.  At birth many CFers need surgery for bowel obstruction, as the mucus is already so thick in their body they can't pass their bowels.  Then, most CFers need to take enzymes each and every time they eat because the thick mucus surrounding their pancreas prevents their natural enzymes from breaking down their food so they can digest it.  Instead, food goes right through them and they suffer from severe malnutrition very quickly.   Many CFers are diagnosed from their failure to thrive as infants.  Even with these fake enzymes a CFer will have many gastro/digestion issues.  Then, they start harboring harmful bacteria in their lungs...the bacteria gets trapped in their tar pit mucus, instead of easily leaving like it does for us because we have thin spit around our lungs.  The bacteria leads to lung infections.  Over time a CF person's lungs get weaker and weaker and more inflamed from constantly trying to fight the bacteria, which of course grows resistant to antibiotics.

I spent those early diagnosis days reading all I could about CF.  And it scared the shit out of me.   But the days, weeks, months were passing and my girl didn't have so much as a cold.  As a preventative measure we went to CHOP every 2 months and did manual chest percussion therapy on her (bopping her with little cups to try and thin the mucus) and also gave her an inhaler treatment a couple times a day.  Now that was hard.  Thankfully, Kevin really helped with treatments because I just about couldn't take the way Bailey would hold her breath when her little mask would get put on her face and her eyes would flare, she'd kick her legs and I just knew she thought we were trying to suffocate her.  I'd sing to her trying to calm her as my tears fell right on her head.

Around her first birthday, I remember telling someone that she is just the BEST baby but I was in a constant state of anxiety because I kept waiting for the shoe to drop.  The CF shoe.  When my baby would suddenly start starving to death and not be able to breathe.

The years went on and we adjusted.  We did preventative care with her but really she was healthier than most "perfect" kids.  We treated her like any other child and went to Disney, waterparks, sat her on Santa's lap, let her play in a sandbox, went on hayrides in the fall.  Why wouldn't we?  Well many CF parents are very scared about these kinds of things, as there have been places that have been proven to grow certain harmful-to-CF bacteria.  Santa sees tons of kids in the winter = germs.  Hay has spores with bacteria.  Waterparks...where do I begin.  Not to mention many CFers are homeschooled and off Bailey went to public.

I never forgot Bailey had CF.  I knew it was in there.  But we enjoyed life and I took such comfort in her more mild mutation of CF, hoping maybe even she would always be mostly asymptomatic.

Last October her FEV1 dipped into the 90's.  FEV1 can go up to 150.  Bailey's baseline was always over 100.  The dip continued...continued...different antibiotics were tried and by then it was summer.   No cough, no sickly appearance.  She always improves over summer due to the ocean and increased swim time so come August we were all expecting to see over 100 again.  Down more.  Over the year she had decreased more than 10% of her lung function when a normal CF decline is 1-3%.  We found out she had finally cultured a dreaded CF bacteria.

The CF shoe dropped.

Since August we have been consumed with Bailey's CF.  More treatments, meds, vitamins, machinery.  CHOP visits.   On Friday we found out it wasn't enough.  Tomorrow Bailey checks in for a hospital stay to get powerful IV meds administered.  The meds will be a 2 week course...we're hoping at the end her FEV1 has shot up and if not they will try something else.  I PRAY this will work and I PRAY she has no ill side effects from these powerful drugs.  I am back to begging God, as I was at the time of diagnosis.  Please please please please please.

So no, I'm not handling it well.  I cry any time I'm alone, and sometimes when I'm not because I just can not help it.  But how is Bailey doing...well, she is scared.  She woke the other night and it was very hard getting her back to sleep. They tried to explain how the meds will be given through a PICC line in her body, which she will be sedated for when it is placed.  I think she is most nervous about that.  But thankfully she sees the good in most things and has planned for a special project she and I could do together.  Bailey is amazing.

Pray for us friends...it is your faith that is helping me have faith.  Much love and thanks to you.

Eight is enough.

Eight years ago at this time I was packing my hospital bag, scribbling out names on paper, throwing up in the kitchen sink, and peeking in on my sleeping just-turned-two year old, who was about to be a big sister.  While it was still dark out, we left for the hospital and I remember turning around to look at the house, knowing we'd be returning as a family of four.

Taylor had a beautiful c-section birth compared to Bailey's traumatic one.  A few hours afterwards, as I held her I knew her name was Taylor Elise...she just looked like a Taylor.  I said, "You're just a Tater Tot aren't you, a little sweet potato."  And it stuck.  She was a beautiful baby and she barely cried as she roomed in with me for those couple days.  Because of having another child, Kevin spent less time at the hospital with me than with my first, so she and I were in the room together, just the two of us girls...buddies.  She took to nursing like a champ and I was one proud, happy mama.

I had no idea what I was in for, really.  I thought I knew, having had a girl already.  Basically I thought that the past two years would just be on repeat, add in a toddler ok a little busier, but I am a grown woman how bad could it be?

Then we came home.

I've shared on this blog before...or perhaps you know me in real life and was witness to it....for years Tate had a hard time.  Now we know she has sensory issues and we are in a great place with it.  But those early years were tough.  I was in survival mode most of the time.  Not to mention of course I also had an older child, who has CF and had to have her different needs met everyday.  Nope they weren't easy years.

But as Taylor grew more comfortable in her own skin, learned some coping skills and how to communicate what she wants and needs...this other wonderful, amazing part of her personality came out.  And we realized SHE IS HILARIOUS.  We are never short on Taylor-stories and we enjoy her antics every single day.  Her laugh is also my most favorite sound in the whole wide world.  I should tape it on my phone to just play it all the time.

At 8:11am (8/11 is my anniversary date too!) on October 7, 2005 Taylor Elise came in to my life...healthy, beautiful, and full of personality.  I had no idea that before she was born my life was so boring.  She adds so much spunk and spice to our family, I just simply can not imagine life without her.  She also has a very sweet, compassionate loving side to her that brings me such peace and comfort.  I adore her.

Tater and her #1 fan, always and forever.

I will never, ever stop being grateful for this beautiful kid and what she has brought to me.  I am drawn to her like a magnet.  I long to see her when we are apart, and I soak up (most) of the time we are together.  She is just a really great kid and if you know her, you can't help but really, really love her.

Happy 8th Birthday Hotter Totters.  Mommy loves you more than anything.  At bedtime tonight you told me you don't want to be eight, you want to stay seven.  Then you went a step further and said you wanted to be a baby again and be one year old.  But I tried to tell you how awesome 8 is, and you have a whole year to get used to it before 9.  Eight is enough...

Mommy will need that whole year to get used to it too.

in the blink of an eye

Moms of really little kids don't like to hear "if you blink, you'll miss it."  And  "these years pass so fast, enjoy them!"  Those sentiments to a mom, with crusty spit up on her shoulder, a toddler screaming on her leg and her arms full of baby, might not be received in the manner you're intending.   The days when you have little ones can seem long.

But I can't help it, I really have to tell you those days do pass in the blink of an eye.

My Bailey turns 10 tonight.  I remember my labor, her delivery...it was a long day and a half.  I didn't get to see her be born bc they had to put me under, and when I came to I remember desperately trying to pretend I didn't feel like I was about to pass out again.  I wanted to hold her and never let go.  Ever ever.

And I still don't.  I don't want to let go.

I desperately wanted a girl.  I joke that God said "alright already!" and signed me up for 2.  There is no bigger joy in my life than being a mom.  Sometimes I think about how I really glean too much joy from it, because of how much I fear them leaving.  I have empty nest issues years before having an empty nest.

Bailey made me a mother, and she has taught me more than I have taught her.  I love her so intensely it scares me.

I blinked and she turned 10.

I'm praying her next 10 years are as healthy and full of joy as her last 10 have been.

Mama Bear

One of the nicest things anyone ever said to me was that I am a Mama Bear.  It was from a good friend who is very supportive and always knows the perfect thing to say.  But she doesn't blubber on, so when she speaks you know she really means it.

I took that compliment to heart and stashed it away, reminding myself that I am a Mama Bear on occasion.  Yesterday was an occasion.

If you know me at all, you know we have been really struggling with Bailey's decreased lung function. It's quite serious actually, and our whole lives have basically been consumed with increasing her FEV1 level.  She has cultured a nasty bacteria in her lungs that she can't spread to non-CF people, but it hangs out there and flares up causing lung infections.  Her doctor at CHOP is concerned this is what is happening given her decreasing level.  But we're not sure.  She is on a really amped up treatment plan and we are praying on Friday when she gets tested that her FEV1 has come up, indicating better lung health which will keep us out of the hospital.  If it has stayed or dipped down more, we are checking in to CHOP on October 8 for a serious course of IV's, which I am dreading for many, many reasons.  That being said, we are trying to keep her as healthy as possible.

But she goes to public school.  Seems a bit of an oxymoron there, what with so many germy kids all around.  Thankfully, it is on the smaller size with class sizes less than 20 (I think the most she's had so far is 18 for half of a year).  I spoke to the principal, the nurse, the guidance counselor, Bailey's teacher and Taylor's teacher about Bailey's increased medical needs given CF is progressive and it has reared it's ugly head.  I asked that Bailey and Taylor be moved to another desk if there is a sick child near them, I asked that they have their water bottles on their desk so no water fountain, hand washing, etc.  Bailey is also allowed to go to the nurse and have a Gatorade that I supply in the nurse's fridge and she can take her water or drink outside with her, as playing outside makes her really thirsty and she loses so much salt through her sweat.  I ask this every year but this year I asked with THAT LOOK upon my face.  You know, like I'm not asking nicely, I'm telling you this is what I want to happen.  Everyone was so nice about everything and from what Bailey has told me, all of her needs have been met each day.

For the last couple weeks I've been picking Bailey up during lunch to get a breathing treatment in (vest/nebulizer/pills...this girl is a rock star, she hates leaving her friends but skips to my van most days...we'll be able to knock the treatments back from 4 to 3 or 2 if her number goes up).  Yesterday, I dropped her off in time that she still had some recess left.  It was hot, so I gave her an icy Gatorade to keep with her on the playground.  I watched from the van as she checked in at the front door, then ran to greet one of her friends who had seen her and was waiting for her.  I see a lunch aide (Bailey is basically fearful of the lunch aides and now I know why) yell at her to leave her bottle in the cafeteria.  Bailey is running off so doesn't hear but the aide yells louder, "YOU CAN'T BRING THAT OUTSIDE BRING THAT BACK HERE NOW!" so Bailey stops and freezes...I jump out of my car and am running towards the cafeteria yelling OH YES SHE CAN HAVE THAT WITH HER and I say to Bailey go play sweetheart and I stand face to face with the aide.  I ask her if she remembers that Bailey has CF and the nurse had a meeting with the lunch aides letting them know that Bailey is allowed to always have a drink with her and if it's hot it can be Gatorade.  She said ok, well the kids can't bring drinks outside because of the ants.  I tell her I understand, but Bailey will be responsible with her drink and she has been given permission because of her medical need.  My blood was boiling. She said ok, that she must not have been there for when the nurse talked to the staff.  The nurse has told me she has talked with them a few times, but I think I will need to make more of an issue of what Bailey needs, in all areas.

Playing the scene back in my head, me running (yeah, I was that upset) towards the lunch aide and ready to throw down over my kid getting to have a drink with her, I feel I was a bit undone.  If it's true she wasn't there for the talks the nurse has had presumably, then she was within her job and I totally get it.  I don't know why I reacted like that instead of being calmer.  I guess I was furious as I assumed she was there, and did know, and forgot because it just didn't matter enough to her.

I'm not proud of myself for my reaction to the lunch aide.  But I am proud that I know I will go to the ends of the earth to fight for whatever my children need.

I'm a Mama Bear.  And at times when I feel really ugh about everything, I'm going to remember that.

towards, not away

It's 9:06 am and around this time 12 years ago our nation came screeching to a halt as we were attacked.  In the days, weeks, months and years ahead, we grieved for those lost and those who were left behind.  My mind couldn't really wrap around what that day did, because I didn't lose a loved one.  I wasn't there for the carnage, the devastation.  I didn't stand in the ash, I wasn't there in that field.  I didn't pick up any pieces, I stood on the sidelines and watched in awe as others did.  As flags rose up high, as parents, spouses and children went on breathing, and living.  I watched, and I learned.

I learned that the America I loved wasn't just good, it was great.  I learned that there were men and women who ran, not walked, to sign up and serve our country.  Just as those firefighters ran towards those doomed buildings, not away.  Just as those men and women on flight 93 rose up against the terrorists and crashed their plane to the ground.  You see, to me, 9-11-01 is not an anniversary of what a group of people with a death wish did to bring down our country.  It is the day when we ran towards, not away.  Heroism.

TOWARDS.
Please forgive me I have no idea how to tell you who took this picture.
It was grouped with other pictures on heroism on 9-11.
I encourage you to google that too, as they are very, very touching.

So when I hear "9-11, never forget" - I won't.  I won't forget the loss, ever.  My heart will always hurt for what happened that day.  But I won't forget the lesson I learned either, in facing danger for the greater good.  I didn't read about it, I saw it.  And I'll never, ever forget it.

through their eyes

There I am folks, no make-up and I look like I have a man's haircut but it's just really pulled back in my standard issue ponytail.  My eyes have disappeared it appears, and one boob looks lower than the other.  Perhaps it's the side both my girls favored when they nursed, who knows it's been a million years.

Oh, you weren't looking that closely to notice the hang-age of my boobs?

That's exactly my point.  We are so hard on ourselves, aren't we?

My daughter Taylor is a tough cookie but for some reason, she repeatedly says things to me like, "you're so pretty mommy" and "you're my favorite looker, mommy".  She loves snuggling with me and resting her hand against my tummy...yes, probably because the softness soothes her with her sensory issues.

Sometimes when I get really down about how I look, I try to see myself through her eyes, and it renews my gratitude for all I have.

If you are feeling down today, think of someone who loves you and try to look at yourself through their eyes.  It will make you feel better I promise!

it's been real

Bye summer.  

You were good to us.  Mostly.  

10 months until we are back together again.

On Monday the girls start school.  I am,

 as usual this time of year, quite depressed about it.

Will I love to have a hot cup of coffee? 

Yes.

Will I love to get my rats nest hair done and perhaps

really get this chlorine washed out by a professional?

Yes.

Will I love to go to work without having to wrangle childcare?

Yes.

Will I love to have an hour go by without asking why the girls are

arguing over a particular Barbie when they own 30 of them?

Yes.

But will I miss summer and my girls TERRIBLY?

Yes.  

It also means my babies are that much older, 

that they are in 4th and 2nd grades.

Where does the time go?

Peace-out summer.

Please, do come again, and don't take so long this time.

suggested. not mandatory.

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

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

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

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

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

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

The beach.  A lot.

The pool.  Pools.  A lot.

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

Homemade milkshakes, zucchini bread and popsicles.

Painting, drawing, sketching and chalk in the driveway.

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

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

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

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

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

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

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

And some more swimming.

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

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

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

I hope they remember being children.  

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

back burner

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

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

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

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

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

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

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

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

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

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

12 years

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

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

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

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

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

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

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

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

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

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

I know now.  

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

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

xo

Dear Kate

Dearest Kate.

May I call you that?  It is not very reverent of me, but I feel that now you are a Mum, we are on more of a level playing field.  

Your prince is just gorgeous.  How could he not be?  I am sure you are staring at him, as you exclaim, "he has my mom's nose!  He has your ears!"  It's a wonderful time for a family, celebrating the addition of a person with their own unique features and yet can look just like someone you've been loving for years. 

How was your labor?  I read William was by your side, and that is wonderful.  I appreciated that you wrapped the show up within 12 hours, so we could find out if you had a boy or girl.  You are always so thoughtful!  I am positive that unlike most women, you didn't poop on the table.  It just doesn't seem your style.  In fact, I don't think you poop.  I read it in People.

You are a beautiful, real-live princess.  You hold yourself so regally, with your pretty clutch purses.  I love looking at the pictures of your beautiful smile as you greet your well-wishers, holding onto your husband's arm.  You embody grace, loveliness, sweetness and also a quiet strength.  No wonder the world is in love with you.

But girlfriend, you just gone done and had a baby.  Sh*t's about to get real, yo.

If you change the royal diapers, you will get peed on.  And pooped on.  A lot.  Perhaps you can don a frock over your gorgeous outfits while you wipe His Royal Highness.  Are you nursing, Kate? If you are, you no doubt are finding that the books that recommended strong and serious nipple play as a preparation were NOT joking.  You grit your teeth and hold onto a pillow for dear life as Boy-Not-Yet-Named seems to be punishing your tender nipples for something you did to him in the womb.  Hold tight, it will get better I promise.  I would advise, as a mere commoner, for you to continue nursing if you can, if only for this reason.  If you need an "out", what is better than, "I'm sorry, I must tend to my son who needs fed. "  Right?!

As a mom who had 2 c-sections, I can not attest too much to the carnage that I know happened to your Royal Vag.  However,  I'm guessing you're a tad uncomfortable.  Remember to be kind to yourself, and rest that J.  I hear sitz baths and ice helps.  Your son is a nice size - congratulations on building such a big boy!!  But I know that 8lbs 6 oz came at a price, and we know what that price was.  The next time William moans about an appearance he must make, or some such drudgery, you may or may not reflect on the war that happened to your down unders.  Not often, but perhaps once a year, you can pull out "I'm sorry dearest, yes that sounds wretched.  But I did go ahead a push a human out of my vagina, and I whined less than you are right now.  And then, the very next day, I stood upright as I waved at millions of people, while wondering how long I had until my pad needed changed.  So please be a dear and shut the hell up, ok?"  William seems like a lovely fellow, and I bet that will be all he needs to hear in order to man up.  After all, from what I read, he did witness it.  And I'm guessing he won't forget.  Neither will you.  But you will, in a way, never remember.  You'll know you had pain, you'll know what your body went through to deliver your perfect son.  But the minute he came out did you not think, "In a heartbeat, all again.  All of it, all again."  The pain becomes a badge of honor, not a hardship.  And a very, very small price to pay for love and joy in the form of a person, right there in your arms.

Kate, as the days go on, you will be tired.  He may or may not cry a lot.  You may or may not cry a lot. I'm assuming you have nannies and housekeepers, but a girl needs her mama.  Let her mother you...after all, now you know how she feels.  And you're her baby.  She'd give her right arm to make you happy.  Be honest with people, and say no when you're not into their plans.  Nap.  Or at least read or watch tv in a bath when you can.  Eat.  Drink lots of water.  

I want to warn you about one thing.  You're different now.  There's no escaping it.  You love William, of course.  But this love, this primal, fierce, nothing-like-it love for your son, it will never leave you.  And it may cause you some pain as time goes on, and you worry for him and his innocence.  You will pray for nothing harder, you will want nothing more, than for him to be safe, healthy and happy.  I encourage you Kate, I implore you, to look to God in this.  Because even with your security, and even with your guards, you will worry.  The only thing I have found is to pray everyday for my children's safety from illness and ill-will.  That helps, and I wanted you to know.  

I also want you to know that I am happy for you.  You have officially been given the hardest and yet most rewarding job in the entire world.  

Congratulations Kate!!  Many blessings and hope for a lifetime of laughter, love, joy and health.

Oh and one more thing.  The media sharks have already wondered about your "getting back in princess shape" plan.  Remember, you're the one living in a castle, not them.  So for crying out loud, have a burger if you want to.  You deserve it.

Fondly, 

A Fellow Mum