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Tears from heaven...

March 30, 2014
Last night it was pouring rain, all night.  Today, the rain continues to saturate us.  Tears from Heaven perhaps?

It was respite night for our family, once a month our Church has a ministry that provides a fun night of friendship, crafts, food, games, and developmentally appropriate activities for the special kids and siblings of these special kids in our church community.

February 8, 2014 the night that Lucy died also happened to be respite night at our church.  
Our "respite family" made this sign out of all of the children and volunteer's handprints.  
They hung it for all to see outside of the children's ministry area at our church.  
It still hangs there today, we love that!

Our church family, they are amazing!

Lucy LOVED respite night, she looked forward to it!  She loved Faye and Andy, "they are my friends", she would tell everyone!

We love Faye and Andy too, not just for what they did for us; volunteering their time and talents once a month to take care of our medically complex girl so that Drew and I could spend a few hours ALONE together.  But also because they saw their night with Lucy as being a gift to them.

They love Lucy, and made her night with them special just by being them.

Andy just so happens to be one of the many great docs at DuPont, but we really can't vouch for his doctoring skills as he was not really one of Lucy's docs:).  However, we can vouch for his nursing skills.  A doc who had the nursing skill set to take care of our medically complicated girl, it was impressive; so too were the number of Chloraprep pads he would go through in three hours!

I remember when Andy first introduced himself to us several years ago.  He was walking down the hall towards us and said, "Hi, I'm Andy and I'm going to be taking care of Lucy tonight. I work with Dr. R."

Immediately I said back to him somewhat jokingly, "Really, I wouldn't leave Lucy with Dr. R."

Andy said right back to me, "I wouldn't either!"

From that moment, I knew this was going to be good.

As for Faye, she is Andy's 12-year-old daughter, she has an entirely different skill set that med school could never offer, she played with Lucy in a way that made all of the medical complexities in Lucy's life look invisible.

Our life, it's so different now that Lucy is gone!

What I just wrote could just be the understatement of the year my lifetime!

The intensity of our days is different, our experiences have colored our perspective, we have no idea how to be "normal".  More than anything right now we are craving a sense of familiarity and normalcy.

Our kids want to do the things we did when Lucy was alive, I think that it helps them feel connected to her, to our life with her.  We are so blessed to be a part of several groups that see our involvement with them continuing despite the reason for our involvement no longer living here on this earth.

There are so many "firsts" that happen when you have a child, and there are so many "firsts" that happen after your child dies.  Both types of firsts are emotional, the second being more heart breaking.

Last night was the first time we took the kids to respite night without Lucy.

I physically struggled to hold back my tears.  Maybe all of the rain is Lucy crying for us, tears from Heaven?

I had a difficult time talking to the many amazing people in our life last night, because at the moment I'm afraid of my own emotions outside of our house.  The tears once they start sometimes won't stop, for hours.

I recognize that the enormity of our grief is a testimony to the enormity of our love for our girl.  I love that!  Grieving her is just one of the many ways we can show our love for her.

As the minutes, hours, days, weeks, and soon months have passed since Lucy's death, I will tell you that it is not getting any easier to accept and move forward.  In fact, it's quite the opposite.  It's so much harder!

Grief is a powerful emotion, the heart and the mind can only handle so much.

We are only just beginning to feel the permanence of Lucy's death.  I wake up every day and face the reality that she is gone, she really died, it is not just a bad dream, it is our life.


March 22, 2014

Missing: A piece of my heart!

When Found: Please return to Nicole Marlett! 

Reward: Eternity!

When Lucy died, she took a piece of my heart with her to Heaven.

For as long as I live on God's Green Earth there will always be a missing piece of my heart.  It will be made whole again when my purpose on this earth is fulfilled and I am once again reunited with our girl in the presence of God in Heaven.

While Sophie sat at the end of our kitchen island this afternoon painting her fingernails Lucy's favorite color, light purple, at least that's what Luc declared her favorite color to be at the end of her life, I asked Soph, "What do you miss most abut Lucy?"

Her answer was swift, "I miss her personality, the one that would get Helen to do the 100 piece Hello Kitty Puzzle.  You know what I mean Mom!"

Oh yeah, I know what you mean Soph, I miss that too!

Go ahead...we'll catch up!

March 17, 2014
We are in mourning, grieving, it is emotionally and physically exhausting.

We will mourn the loss of our little girl every day for the rest of our lives.

As cruel as it feels, the sun still rises every morning and sets in the evening.

Every morning I wake up (I use the phrase lightly as sleep is something that I am struggling with) and face the reality that Lucy is no longer physically with us...she died...she is in Heaven.  

Every morning I have to figure out how to live life without her. 

If we weren't living this reality I wouldn't believe the disbelief that we continue to experience.  It feels surreal, only it's not a far-fetched dream, it's real.

As time moves on, we are not.  We are standing still, trying to process and reflect on what happened and what is happening.

Go ahead...we'll catch up!  Probably not right away, not for a long while, and our path it will change.

Our life is indelibly changed!  

I put myself on social isolation last week.  Drew was supportive of my decision fully aware of the emotional storm that was brewing.  My emotions are like gaping wounds sensitive to the slightest touch.  

We went to church last Sunday for the first time since Lucy's celebration of life service.  The sermon was good even if it was entitled "Moving Forward", seriously.  I was not good, I struggled to not cry out loud.

Lucy's birthday was on Wednesday, it took every ounce of energy from me to simultaneously celebrate her life and grieve her death.

Birthdays mark the number of years since birth, they are a celebration of life - it just doesn't feel appropriate right now, like pouring salt on my gaping wounds.

There was a full moon last night, it shone brightly in the night sky.  I remember staring at that same moon, full, from the parking lot of the funeral home one month ago on the night of Lucy's Valentine's Day service, warm tears streaming down my cold face.

Yesterday, we celebrated my birthday.  Whether or not I want to, I am getting older without my baby girl being here.  We all went to a restaurant for lunch to celebrate.  I begged Drew not to tell them that it was my birthday, he mentioned it.  Thankfully the waitress could tell from the expression on my face that I was really in no mood at all for the fake enthusiasm that accompanies a restaurant chorus of some version of "Happy Birthday".  Lucy's absence felt even more enormous than usual.  A table for five, it kills me every time!  

Fact, Lucy's favorite song was "Happy Birthday".  She loved to sing it!  It's repetitive; the same four words over and over, the perfect song for a girl like ours.  When we were singing it for her on her birthday the kid's expressions told of the same memory, of Lucy signing Happy Birthday over and over and over... Yesterday it definitely hurt more that we were missing a member of the choir.

Our kids, they are each processing and dealing with the death of their sister in their own way.  It is so true what they say about grief, no two people grieve the same way. In our house, no five people are grieving the same way.  From six o'clock on there is a general sadness that overcomes us all, that was our time with Lucy.  Bedtime, it's the absolute worst time of the day for all of us.  Her music still echoes in our halls and in her bedroom, but the silence everywhere is deafening.  At times we have thought about turning on her oxygen compressor, only we recognize that it will probably make things worse not better.

This reminds me, I need to call our respiratory supply company and schedule a time for them to come and pick up all of Lucy's equipment.  At a time when we are so desperately hanging onto anything Lucy, we are constantly being reminded that she is no longer here.  

We recently received a letter in the mail that simply read, "Lucy Marlett no longer qualifies for services in our county", the reason in big bold letters, "DEATH".  Thanks, as if we didn't know. 

Drew had thirty days from the date of Lucy's death to make changes to our benefits; taking Lucy off of our list of beneficiaries was painful for him. 

Life it goes on, whether we do our not.  

Please don't read this and feel compelled to try to find solutions to our pain or problems.  My intention, as it always has been on the pages of this blog, is to document where we are in our journey.  It has always been more for me than anyone, but I know so many of you care and want to know, which is why I share.

Today is your birthday...

March 12, 2014
I wonder what the party is like in Heaven?

 I can only imagine that God goes all out for his special angels! 

Password: Lucy

We are celebrating you, remembering you, grieving you, missing you, loving you from here all the way to Heaven... 

We are all wearing our "For the Love of Lucy" T-shirts today.  Sophie is sporting your signature hairstyle, with ribbons even.  Megan's hair was too long for "bear-ears", they were droopy making them look more like elephant ears, so she just stuck with piggies.  Jack woke me up in a panic because at first he could not find his Lucy shirt.  Guess what, it was in a pile of clothes he put away in his dresser, can you believe that.  We asked everyone who knows you to buy birthday presents for you and deliver them to the place we affectionately call "our home away from home".   The entire Avon Grove School District is supporting us in our efforts to celebrate you! I hope the child life department is ready for the celebration.  Dancers are dancing in your honor today at the hospital.   And we will eat cake, vanilla with vanilla frosting, of course! 

Friends and loved ones everywhere are thinking of you, and praying for us as we celebrate this first birthday without you.

It's impossible for me to believe that you are six years old today, but even more impossible is that we will not get to celebrate it with you.
We love you Lucy Grace!

Without any words...

A picture says a thousand words, or so they say.
The following video is a collection of photos that were taken during the last month of Lucy's life.  It's a beautiful collection of photos that tells the story, without any words, of the end of our little hero's life .
We shared this at her service, it is powerful and emotional - in other words you might need a box tissues!

Password: Lucy

How is it possible...

March 9, 2014
How is it possible that it has been one month since I last kissed those sweet sweet lips...

since I last held those dainty little fingers...

since we last brushed the perpetual wisps of red hair off of your forehead...

since I last inhaled the sweet scent of you...

How is it possible that it has been one month since I have heard your tiny little voice...

and looked into those mesmerizing blue eyes...

How is it possible that it has been one month since I last held you...

Nothing will ever take away our pain, the pain of missing you sweet sweet girl, nothing.
Sending all of our love to you from here all they way to Heaven...  

Help us Celebrate Lucy's 6th Birthday!

March 3, 2014

You're invited to help us celebrate 
Lucy's 6th Birthday!!!!!!

So many of you have asked how you can help us...
What we would love, in addition to helping fund a cure for Mitochondrial disease, is to be able to give back to the place that we affectionately call "our home away from home"!
Please help us to celebrate and honor Lucy Grace Marlett's life...

How: By making monetary or new toy donations to the Child Life Department at Nemours A.I. DuPont Hospital for Children.  A portion of the monetary donations given to the Child Life Department will be set aside to help establish a Beads of Courage Program for children with chronic illness and their siblings at A.I. DuPont Hospital for Children.  This is a legacy that we very much want to establish in Lucy's honor, something that we had been dreaming of doing when Lucy was alive...after all she is the most courageous girl we know!

When: During the entire month of March! Or, if you are like me and need a date on the calendar to actually remember to get something done, then let's just say March 12th, Lucy's actual birthday!

Where:  You can make an online donation here, drop off or mail your presents to the hospital at 1600 Rockland Road, Wilmington, DE 19803 (be sure to address them c/o the Child Life Department in honor of Lucy's Birthday), or if you are local you can deliver them to us and we would be happy to take them over to the hospital for you.

When making an online donation click here:
  1. Under “Donor Designations” select “Other”
  2. Under “Designation Note/Memorial Tribute Info” you will find the box “Designation Note.”  Please write “Child Life” in this box
  3. Fill in “Honoree First/last Name” with Lucy Marlett

As many of you know, during Lucy's lifetime we spent a significant amount of time living in the hospital.  How did we do it?  That question gets asked of us often.  One of the ways, we were blessed by the most amazing Child Life Specialists!  Our child life team always had an age appropriate toy or activity for our girl, our children.  We love Melissa and Doug craft kits, sticker books, and toys! If you were to ask Lucy she would tell you that messy crafts are the best!  That being said I asked our Child Life Specialist to put together a list of their most needed toys so that Lucy's Birthday can benefit as many children as possible.   Feel free to donate what you want or choose from the list below.  Please keep in mind that the hospital can only accept new toys and stuffed animals for donation.
  1. Baby dolls - all ethnicities
  2. Infant/toddler toys - rattles, teethers, toys that light up and make noise (these are most needed!)
  3. Small or medium Lego kits
  4. Matchbox cars (singles not kits)
  5. Coloring books & crayons, colored pencils, markers (12-24 ct. packs)
  6. Uno Cards
  7. Play-Doh
  8. Bubbles - small bottles
  9. Headphones or ear buds
  10. Gift Cards (Amazon, Target, Walmart, iTunes, Forever 21, American Eagle, sporting goods stores...)