Wednesday, April 9, 2014

One foot in front of the other...

One foot in front of the other, now do it again, and step at a time!

On the night that Lucy died, just after midnight, the funeral home came to the hospital to pick her up and take her with them.  Incidentally, this was the first time that Lucy ever went anywhere without me.

Our family of six was snuggled up all together in Lucy's bed when the funeral director came into the room.  We were studying Lucy's features, tracing our fingers over her beautiful face like we were going to be taking the most important exam of our lives on them.  When he first approached the bed he attempted to introduce himself to us, but then suddenly had to step out of the room as his emotions got the better of him.  Some might criticize and say that this was unprofessional of him.  Not me, it meant the world to me that he was so emotional.  In my mind it meant that he could immediately see that our girl was so loved, so beautiful, so peaceful, and too young.  

When they left with Lucy's body to take her back to the funeral home, a guttural cry came bellowing from the depths of my soul.  My arms ached from the abrupt emptiness, my heart shattered into a million pieces never to be whole again, the moment I handed her over to Drew who placed her on the gurney that would wheel her away.  I kissed her sweet sweet lips one more time, wiped away the foam that was coming from her mouth, and repositioned the single white rose that the funeral director brought to be placed on our little girl's chest.  "She would have loved this", I said with tears pouring from my eyes referring to the rose.  I could feel my legs start to give way to the pain that was pressing down hard on me. The enormous sadness and excruciating pain, they were so overpowering that I struggle to remember many of the events or any other emotions from that time.  

The night Lucy died we were faced with having to make a decision on where we were going to go after she left. We really had not given any thought to this ahead of time, because we had no idea when Lucy was going to die.  The kids and Drew had been staying at the Ronald McDonald house across the street from the hospital for nearly three weeks, we could have gone there.  The circumstances were insurmountable; we had never gone home without our girl, never not signed discharge papers and scheduled clinic visits, never not had to wait on our infusion company to deliver supplies.   How do we do this?  Where do we go now?  I decided that I wanted to go home, with my husband and three remaining living children, for the first time since December 16th, 2013.  The emotions inside were ripping me apart, I really felt the desire to go home, even though I had no idea how I was going to walk into our house without Lucy.  Despite our kids crying and saying that they wanted to stay, we packed up the essentials and left the rest for the nursing staff to do for us.   It was late, after 1am, we were exhausted, and deeply and profoundly sad.  Nonetheless we had decided that the time had come for us to go, it was time to go home, without her.

I had no idea how I was going to do this; how I was going to walk out of those hospital doors without her, pushing her empty wheelchair.  I gripped the handle of her wheelchair with both hands, relying on it for support, and walked out of the hospital that cold cold night accompanied by family and friends.  I kept repeating to myself, put one foot in front of the other, now do it again, and step at a time!

Yesterday marked two months since we last held our baby girl, two months!  I wonder what her days are like, what her body looks like totally healed.  Our life will never be the same without her...

Monday, April 7, 2014


Our Megan is eleven years old today...really, she's eleven!

How can it even be possible that eleven years have gone by since the day she was born?  I realize that I probably sound like a broken record when it comes to my children and their birthdays, but I remember her birth like it was just yesterday.

Meg arrived a week before her due date, unlike her brother who was a week late.  This fits their personalities to a "T".  Megan prides herself on being on-time if not early(can you believe she's our child:).  Unlike Jack, he's never been in a hurry, in fact he asked us recently if we thought it would be a good idea for him to start wearing a watch:).

Meggie, she's darling, moody, but darling!  We think, scratch that, we know that puberty is among us.

Meg, she's organized, self motivated, and knows what she likes and doesn't like.  She's smart, and funny, but don't bother trying to make her laugh with a good joke, she doesn't find the humor in them often.  She's graceful, you should see her dance, and yet she has the loudest walk.  She's witty, bright, and oh so lovable!

A lot of people think that she is the miniature version of me. Drew especially thinks so, both the good and the not so good qualities.  I think it's just the glasses :).

When God gifted Megan he gave her the kindest, most loving heart, she's a nurturer.

She's a great sister.  She and Sophie are two peas in a pod, they are roommates, they need each other.

There's also no denying the fact that she and Lucy share a bond like no other!

Meggie, what's not to love?  She's one beautiful human being!

Happy 11th birthday girly!

Tuesday, April 1, 2014

A Benefit Concert For the Love of Lucy...

Mark your calendars and join us for an evening of music in remembrance of Lucy while supporting us in our efforts to find a cure for 
mitochondrial disease.

The Hockessin Music School and the Wind Symphony of Southern NJ Present:
A Family Concert 
For the Love of Lucy
Please join us on Saturday, May 3rd at 6:30 pm

The Marlett Family - Nicole, Drew, Jack, Megan, Sophie, and Lucy - ALL love music and have been students at the Hockessin Music school since 2001.  Lucy lost her battle with mitochondrial disease on February 8, after five years and ten months.  For the Love of Lucy Research Fund, established by Lucy's family and The United Mitochondrial Disease Foundation, will support research to find a cure for mitochondrial disease. Be a part of this effort while enjoying an evening of music featuring some music for the kids, such as music from Harry Potter and the Lion King, as well as some pieces for the adults. Preformed by the Wind Symphony of Southern New Jersey, this concert will be an enjoyable family event for everyone. The concert will be an hour long and 100% of the proceeds will go to the For the Love of Lucy Research Fund.  

The concert will be held at
 Willowdale Chapel, Kennett Square, PA

Tickets $10 individuals, $25 families. Make checks payable to: UMDF and write For the Love of Lucy on the memo line. To reserve tickets click here or contact 

Sunday, March 30, 2014

Tears from heaven...

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.

Friday, March 21, 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!

Sunday, March 16, 2014

Go ahead...we'll catch up!

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.

Wednesday, March 12, 2014

Today is your birthday...

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!