Monday, July 30, 2012

a message from the mommy.  i actually wrote this post on June 23rd, still fairly early into this situation, but i didn't have anywhere to post it at the time.  not sure how relevant it will seem to you, but it seems relevant to me.

23rd June, 2012. 7:27 pm
i don't really know where to begin, but i know i need to get these thoughts outside of my head.  i don't want to ask "why me?" or "why us?".  i know there is no reason.  whether you believe in a higher power or don't, this isn't a question to ask.  why anyone?  it has to happen to someone.  everyone can't just go around having perfectly healthy babies. 

i do believe in a higher power.  i do, because i can't look back at the last few years of my life and think otherwise.  just a few short years ago, there was no Josh, no Laney, no marriage, no house, no calmness.  i was selfish and careless and dark, deep down.  i bounced around, chasing specific desires, not caring who it hurt.  it ultimately only hurt me.  i went, i felt, all the way down.  i was 31, single, with zero prospects, and a job that did not fulfill me.  i had friends and family and health, but i couldn't fully appreciate anything because i was so upset that things didn't turn out the way i had hoped.  i was down.  i was out.

but i climbed.  i climbed and climbed and i kept my face to the sky, chin up.  it was December 24th, i think, when my friend Judy took me to church.  and i cried because somehow they said what i needed to hear.  to inappropriately paraphrase - "it's been a crappy year, but things will get better".  i continued to go to church with my wonderful friend.  i enjoyed and appreciated the things she did to show me she cared about me.  decorating cookies, crying on her couch, laughing through tears.  i did fun, healthy things.  i prayed.  i took the time to heal.  i turned away from bad things.  i read the words of the Dalai Lama.  i read inspirational religious books and studied happiness.  happy people have a larger prefrontal cortex.  i worked to "exercise" mine.  (the trick was delayed gratification, and as i write this now, i realize why right now i am spiraling out of control.)  basically, i crawled, limped, hobbled, walked, and then ran towards happiness.  i studied it and approached it in every way possible.  that time seems so magical now.  it was Spring and i'd open the windows in my car and play songs by Lisa Hannigan and let the cool air blow my hair around.  i'd smile and hope it was contagious.  i'd wake up at 3AM to go for a run, so i would be too tired by the end of the workday to sit around and feel lonely.  i'd make plans to see musicals, shows, movies, comedians ... trying to fill my calendar so i'd have things to look forward to.

i had it DOWN, man.  and slowly, i'd begin to pray, "God, i think i'm ready for someone ... if you think so too, please bring him into my life".  

the new job i started was awesome.  at first glance, financial counselor meant asking cancer patients for money, but i was wrong.  yes, it did mean that, but it also meant meeting amazing, inspiring people.  it meant that i finally had a healthy outlet for my nurturing side.  not sure if those patients needed me, but it turned out i definitely needed them.  my co-workers were also amazing.  lifelong friendships and hundreds of bonding moments.

i had, possibly, ONE bad day in 2009.  It was April 16th and it was only bad because i made a HUGE mistake running a patient's credit card for way higher than he owed.  he wasn't mad and we fixed it, but i felt awful.  i thought it was a really bad day, but it turns out it was the day i met my husband.  

right after i called to apologize to the patient, i walked out of my office and saw one of my favorite patients standing at the window waiting for me with her son.  i'd not met him before and because i was so distracted about the credit card error, i really wasn't focused on meeting with them.  he would later say it was love at first sight for him - i feel a little guilty i was so distracted.

long story short, it was the beginning of the life i know now.  

we met April 16th, first date May 7th, he proposed January 10th, 2 blue lines on the stick on February 7th, married by the JP on March 30th, married in the church on May 8th, had our first amazing little girl on October 12th, 2 more blue lines in October of 2011 and closed on our house in November.  

June 14th, 2012.  this is where we hit a darker chapter.  this is where all of those moments before are folded up to create the foundation we stand on now.  my faith, my family, my friends ... i could not live this moment right now without all this.  i have spent the last 9 months or so carrying around a precious little soul.  the most amazing, serene, lovely little creature.  i carried her for so long and now i feel so empty.  i look at my belly now ... still round ... a hollow shell ... a constant reminder that she's not with me.  that maybe it's my fault.  that maybe i made her wrong.  that maybe i did this to her.  that my body didn't protect her like it was supposed to.  how can i explain this feeling?  this emptiness?  i carried and gave birth to something, but that something is not here.  she is miles away in a hospital surrounded by machines that beep and chime like a casino.  she is not here.  she is not here.  she is not here.

my husband is a saint ... he is unwavering.  he is a rock.  he is sure in the face of utter uncertainty.  he seems unshakeable.  always hopeful.  always faithful.  i cling to him and sometimes i beat on him and i'm sure i test him, but he believes.

i vacillate between strength, following his lead, and deep deep sadness.  i jump ahead and picture the worst.  he pulls me back.  he pulls me out.  
i want a solution.  i want to fix this.  damn the delayed gratification.  i can suffer, but fix her.  fix her, God ... please?  Uncle Jack, Tante Letty, family and friends who've passed, those souls who i've always spoken with for comfort throughout the years - please watch over her and protect her.  

if this is punishment for something i did or do, please forgive me.  if this is a test, please let it be close to the end.  i will not lose my faith.  i will not stop trying to be a good person.  i will not give up on my little girl.  i love her.

i've been riding high for a very long time and i know life has its valleys.  i know it couldn't go on so great for much longer.  and i know this, right now, isn't the lowest the valley can go.  

i know that God gave us this little girl because He knew we would love her with all our hearts and would give her the best life we can, no matter how long or short that life is.

Neely - we love you.  we love you and love you and love you and love you.  we will never stop loving you and are thankful for every moment with you.  you are our daughter, were born to be OUR daughter.  you are our blood, our love.  you and Laney are the evidence of the best of us.  mommy will try harder.  you fight and mommy will fight.  my precious girl, we will all get to the next peak together.

love you always, 


Saturday, July 28, 2012

Update 7/28/2012

Today, I got to go up and visit Neely in the NICU.  She is doing well but has a rash around her broviac (central line).  She's drinking 5 CCs of milk and has a half CC drip.

She was asleep for most of the visit, waking up occasionally to cry.

I finally met Neely's amazing nurse, Caty.  I'd heard nothing but wonderful things about her, and she didn't disappoint.  At one point, I called her a wizard.  She is taking great care of Neely, and we're truly blessed to have someone like her at Neely's side.

Saturday, July 21, 2012

Neely's Song

Hey everyone, this is Jack (the uncle).  We have received a lot of loving and wonderful support from family and friends during this difficult time, and we can never thank yall enough.  We know that we haven't been very forthcoming with the details of why we need so much support or why this baby needs so many surgeries or why her mother is praying for poop... mostly because it's just so big.  It's big because a lot can happen in a month, but more... there's just so much weight.  I know that when I talk about, I kind of lose hope because it's a reminder of how many odds are stacked against the happy ending.

This is a blog we've set up to keep our loved ones aware of what's going on and to humbly beg for any donations towards Neely's long journey.