Wednesday, October 8, 2014


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

But back to the birthday girl.

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

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

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

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

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

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

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

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

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

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

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


I love you so much Tater Tot

Wednesday, October 1, 2014


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

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

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

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

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

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

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

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

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

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

She is mine.

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

11 years.  Thank you God.