Losing Our Daughter...

This is the last flashback of the weekend.  Tomorrow will be business as usual with some fun news (and a great video!!) from our weekend.

One of the most profound experiences of my life was the life and death of my daughter, Darcy.  Before this blog existed, I wrote on CaringBridge.  (You can find that entire journal here.)  Among many other things, I chronicled the five excruciating days I was hospitalized trying to deliver her body.  These posts are from the day we met her and handed her over.  And then one year later.

This Parents Magazine contest has morphed into something way more profound than I ever imagined.  I'm so grateful for your emails, kind comments and support for our family.  More than that, I feel like I have been given a gift to be able to reach the broken, the hopeless and the frightened.  I feel honored that anyone would think to reach out to me for support or to lift their spirits.  If sharing my experience helps even one soul feel less alone or less burdened... I will have won more than a contest.  Thank you, Parents Magazine, for changing my life already.

~~~~~~~~~~~~~

MONDAY, MAY 10, 2010 5:16 AM, CDT


Darcy Claire Leong was born still at 2:40am on May 10.
She weighed 6.5 ounces and was 7.5 inches long.
Baby Darcy is resting comfortably in God's arms.
Mommy and Daddy are heartbroken.


MONDAY, MAY 10, 2010 2:46 PM, CDT


Today has been, without a doubt, the hardest day of our lives.  I haven't decided if I'll write about the details of my delivery.  What I will say is it was peaceful, non-stressful, and miraculous.  Darcy was perfectly formed - perfect hands and feet that were as big as a fingernail. Perfect ears.  I'm sure she had Brian's nose.  And her lips were gorgeous little rosebuds.  I delivered her at 2:40am and my friend, Karen, flew to the hospital and was there by 3:30.  She took tons of photos for us for which I'm so grateful.  Our nurse was able to get footprints and handprints and gave us other mementos to hang onto - hospital bracelet, name card, etc.


I held her for hours - even napped with her on my chest for a while.  I sang to her, rocked her, and told her how sorry I was.  I expressed my sorrow for the hopes and dreams I had for her future that will never be.  And we cried... and cried.  The sorrow in the room was intense. 

Our daughter.  Dead.


We decided to contact the hospital chaplain because of the early hour.  Our priest at home was further away. The Chaplain performed a private service in our room - blessing Darcy and comforting us.  After the service, we knew it was time to let her go.  Her little body was quickly changing and we wanted to remember her before she deteriorated greatly.  The Chaplain and a nurse came back to take Darcy to bring her to the morgue.  I froze.  I just couldn't hand her over.  After crying all over her, I had to hand her to Ed and ask him to walk her out of the room.  I just couldn't do it.  A few hours later I received a call from our funeral director that he picked her up and had her safely at his home.

I can't believe our beautiful Darcy Claire is gone.


Just when I thought it was over... that we could go home and hug our little boys... more bad news.  After the delivery, my blood work came back with elevated liver enzymes.  I've been told that I have an "Atypical presentation of PreEclampsia".  My blood pressures leading up to this hospitalization were fine at every doctor's appointment.  It's possible that Darcy's death is due to preeclampsia.  And there was nothing I could have done about it as it wasn't picked up.  It's also possible that her death could have been a cord accident. The umbilical cord was twisted extremely tight.


So, here we are, still in the hospital.  They will be repeating my labs tonight and hoping that they go down.  If they do, I will go home. If they don't... we'll be overnight and go from there.  They don't want to send me home as I could be at risk for seizures if left untreated.  Ed is not leaving my side - we really need each other right now.  I've started trying to pump to get my milk to come in.  I'm still planning to donate as much milk as I can to a milk bank in Darcy's name.


These have been the worst days of my life.  I can't begin to express my gratitude for the many, many notes and letters and emails.  They mean so much to me.

~~~~~~~~

One year later...

Dear Darcy Claire,


Well, here it is. The one year anniversary. Where did this year go? It seems like yesterday that I was holding you - memorizing you - your blanket catching my tears. I thought I would be more "okay" today... and all the days leading up to today. I'm always okay! But strangely, I am not. I've struggled through these days and I can't explain why. It's just a year. But then again... it is a year. A year where we could have been getting to know you... not left with the wonder of who you might have been. My heart breaks today just as it did this day last year.


I miss you so much.


This morning when I woke up, I had an unexpectedly busy day ahead of me. While Tuesday's are normally just one therapy for your brother - it turned into three when I accepted last minute make up sessions. I was regretting that decision as I brushed my teeth - but felt so conflicted. Part of me felt so anxious, not interested in "company". But part of me felt so guilty - why should I deprive Gavin from his therapy. I hemmed and hawed and, although it was too late to cancel his Physical Therapy this morning, I was able to cancel the other two and they totally understood.  I just needed to... be.


But Darcy, strange things have been happening today.  I think your brothers sense that Mommy is hurting and they have been so good. Gavin was all smiles through Physical Therapy, which was a huge shocker. Brian and I were his cheering section and were so proud of him as we watched him work out with Miss Wendy. And Gavin took a nap - which is totally out of character and gave me a much needed break.


And Brian... he has been something else. He's never done this before, but everytime I walked away from him - to do laundry, to do dishes, to sit down - he'd come over... grab my hand... and pull me into the playroom to sit with him. I couldn't help but think that this was his way of getting me out of myself. Keeping me busy so as not to be preoccupied with grief. It did work, I have to hand it to him. He's just so irresistable, your brother. 


But the weirdest thing that is happening today is just that... really weird. Last night I threw up out of the blue - just felt so sick and exhausted and out of it. It was really out of the blue! Then through the night I woke up in a sweat several times. This morning when I woke up, my back ached like I'd been lying in bed for days. I felt crampy and uncomfortable. I'm not making this up - it really freaked me out. It felt similar to how I felt this day last year... after five days of lying in bed trying to deliver you. I don't know what to make of how I feel - it certainly isn't helping my mood.


This past year has changed me in so many ways. I am less bothered by small things... more appreciative of my family... and, most importantly, proud of myself. Those five days leading up to you were agonizing. The five hours I held you were heartbreaking. And giving you up to a stranger to take to a morgue - horrific. There were days I didn't think I'd be able to get through it all. I don't mean in a final kind of way... I mean a "coping well" kind of way. But Darcy, I did it. Sometimes you don't know the strength inside of you until you suddenly need it. And then, nothing can break you.


Your short little life has opened up a whole new world for our family. We've made new friends as they found out about our story... we've been placed on countless prayer chains... I receive at least ten emails a day with support and love and asking for advice that I really don't feel qualified to give. You are more than a baby who didn't make it. You are more than the ashes I wear every day around my neck. You are an angel to all of us... and you've left behind a legacy of caring that reaches beyond this little family of ours.


I am so proud to be your Mommy.


Last night before the sun went down, your Daddy, brothers and I had our own little memorial for you. It was a bit chaotic what with the timer on the camera ticking, Brian wanting to jump out of Daddy's arms and Gavin arching back. Before I knew it the balloons were in the sky... like love letters to you in Heaven... just like last year.


You will always be missed. You will always be loved. You will never be forgotten. I promise.


Love, 
Mommy.

If you'd like to see the video I made for Darcy (if you haven't already seen it a hundred times) click HERE. (There are some graphic and possibly unsettling pictures... you've been warned.) 

How to Handle the Stares...

This weekend I'm re-running some of my favorite posts to give new readers an idea of who we are...how we think...and how we love around here.  This one struck a nerve when I posted it back in May.  Everyone handles the stares differently, and this is my take on the situation... 

MONDAY, JULY 9, 2012

Stargazers...

Stargazers.

That's what I've decided to call them.  You know, the people who stare at Gavin when we're out in public.  Because let's face it - they're stargazing if they're admiring his movie-star good looks.  Am I right?

In my travels, I've met (and "cyber-met") plenty of people who get very irritated at Stargazers.  They come up with sarcastic comments - or shoot them nasty looks - or sweetly engage them in conversation.  I don't really do any of that and I'd like to tell you why.

Staring is human nature.  I've been guilty of staring and haven't even realized it!  Just last week when Gavin and I were at the hospital to get his wheelchair adjusted I stared at a family.  They were a Chinese couple - there with their young son who looked like he was recovering from severe burns all over his body.  I stared at them for probably ten seconds.  If they had looked up and saw me, they might have thought I was staring at his burns.  They could have been annoyed and said something nasty to me.  Why was I staring?  I was thinking, "How nice that the Dad came along for his son's doctor visit." because I know how much I like it when Ed comes along every once in a while.  That was it!  No malice.  No ill intent.  No negativity at all.

I've found myself staring at families with a young infant at the hospital.  I always hope that if they look up and see me looking that they can read my eyes.  My eyes would be saying "Hang in there.  It gets better.  Right now you feel like you're at the bottom of the well looking up into the dark night.  But your fears of what life is going to be like will not be your reality.  Soon you'll see that this child that needs your help will be the one that helps you...the one that changes you for the better."

I've stared at special needs kids.  Maybe I was looking because I thought their wheelchair was slick and wondered what kind it was.  Or maybe I was looking because they looked like Gavin and I wondered what their diagnosis was.  Maybe I just thought they were cute!

My point is - you never know why someone is staring.  It could be for reasons you'd never expect.  So letting yourself get irritated or offended or mad or sad about it is wasting precious energy...and allowing negative energy into your life.  And that's never good!

I want to raise Gavin and Brian to always assume the good in people.  I don't want them to get emotional about people who stare.  Even if the people are rude.  There will always be rude people in the world - but there's no reason that they should be rude in return.  I want them to assume, like I do, that anyone who is looking at them has to be admiring them!  Why not?  It's a much nicer way to think.  

And if people are staring simply because Gavin's "different" - well, it happens.  Gavin is different and there's no changing that fact.  I just think it's totally human nature to look and I don't judge people who do.  Not everyone was raised with the "subtlety" gene.  Me, included.

 That's what's on my mind today.

Welcome to New Readers...

The past 24 hours have been overwhelming.  Since I was nominated by Parents Magazine in their Best Parents Blog Awards, I've been completely humbled by the outpouring of attention and love.  Glennon Melton from the wonderful blog, Momastery, endorsed little old me, which blew me away.  Today alone I had 27,899 page views.  It's only four o'clock in the afternoon.  Overwhelming.

Better than that... I have received seven emails so far from parents who were touched by a post or our story and wrote to thank me for giving a voice to their feelings.  For showing them that they're not alone.  And now I feel like I've been given this gift - to reach even more parents.  I love sharing my attitude with others so they can see that they really can get through this life in one piece, no matter what obstacle is thrown in their way.  If those seven women are changed for the better in just one small way, I will have won this "contest" in my eyes.  

Since there are so many new friends here, I thought this weekend I would re-post some of my most important journal entries.  The ones that meant a lot to me.  The ones that really show who I am - and how we love here.

I'm grateful today, as I always am, for every person that spends their precious time getting to know our family here.  I hope you stay long enough to witness the miracles.

*************

I wrote this post the night before Gavin's very first day of school.

**************

This was the first time I got to hold you - really hold you - after you were born.  

And each day thereafter for the thirty days you were in the NICU.  

And all day and most of the night when you came home.

When it was just you and me, I would whisper promises in your tiny ears.  I promised that I would always try to figure things out for you.  Figure out what you needed.  Figure out the best way to help you.  Figure out the best doctors to see you.  Figure out the ways you liked to be entertained.  What made you smile...what made you sleep...what motivated you. 

I promised that I would always be your student.  I would research and learn and and figure out feeding tubes, hearing aids, genetic syndromes and all the medical issues that would crop up along the way.  But mostly, I would let you lead.  I knew that you would teach me all I really needed to learn.  And you have.  You were a patient and gentle teacher - perfect for this first time Mommy.

You and I have been a great Mother/Son team for the last 4 years, 10 months and 29 days. (I guess it's a good thing I stopped making these monthly signs at year 2!)

I have fought fiercely for you along the way and so far have been able to get you just about everything you needed - or we've been told you needed.  I've made decisions that I believed were in your best interest, some that weren't very popular - like not succumbing to the pressure to have a G-Tube placed or letting your bare feet feel the floor and not feel braces all day long or keeping you home from pre-school last year so you could get stronger.  I've been in your face a lot - and given you space to play and be 'you' a lot, too.

I have been very protective of you.  Making sure people around you wash their hands.  Not allowing shoes in the house out of respect for you - who spends most of your happy time on the floor.  Being hypervigilant of other people's sniffles and sneezes and keeping you far away.  The two of us even donned "Swine Flu Masks" when we went out in public during that outbreak.  Yes, I am pretty over protective.  And proud of it.

  

But when your body was weak and you were in trouble, we healed together.  I've never left your side.

This Mother-Son dance has been a learning experience for both of us.  And even though you led the dance - I chose the song.  And I did the singing.  But all of that is about to change.

Tomorrow morning, I will watch you get onto a bus.  And that bus will drive away.  Starting tomorrow, you will begin to have experiences that don't include me.  I will be told what you did that day by someone else.  I will read notes about your therapy sessions.  There will no longer be thousands of photos a day.  (Note to self:  invest in a long, zoom lens and find a good tree outside of the school)

We will be reinventing us, Gavin.  I will still be your dance partner at home...with the songs I've always sung and the moves I've always had. 

But I know that you will come home each day with new favorite songs and new favorite moves and, once again, I will be happy to let you lead.  It is very hard for this Mommy to watch you go.  Hard for me to give up my job of "keeping you safe...happy...healthy...and progressing" as well as I can.  Hard for me to think that I'll miss a "first" or a laugh.  Hard for me to imagine that I won't be there to comfort you if you're sad or hurt.  But I know this is the right thing for you - and I know that we will both be fine.  I feel it in my heart.  This is right.

As you go to school and meet the first of many teachers you will have from now on...

...I want you to know that you are the best teacher that I've ever had.

I love you so much, Gavin David Leong.

Love, Mommy