Friday, April 25, 2014

She loved music...

I wanted to post today and give you a little background information about the upcoming benefit concert being held in honor of Lucy.  It will be a fun and relaxed environment for the entire family!

It is my hope and prayer that Lucy's spirt will shine down on all of us as we gather for an evening of music in honor of the bravest five-year-old girl we know, Lucy Grace Marlett.  "For the Love of Lucy" we would be honored if you and your family would join us and surround us in love as we honor our girl while raising awareness and funds for mitochondrial disease.  We would love to see you there.  All proceeds from the concert will go towards the "For the Love of Lucy Research Fund" established by her family and the UMDF.  

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


 Willowdale Chapel
675 Unionville Road, Kennett Square, PA 19348
Tickets $10 individuals, $25 families. 
Make checks payable to: UMDF and write For the Love of Lucy on the memo line.  Credit cards will also be accepted on the day of the concert.  
To reserve tickets click here or contact rjstreck@udel.edu  
Tickets will be available for purchase at the door.


Our dear friends Bob and Jill, or as Lucy liked to call them "Bill" (Luc would laugh every time she called them that :),  called me in the fall excited to tell me of an idea they had to help us raise funds and awareness for mitochondrial disease.  Bob and Jill are exceptional human beings with loving hearts, who just so happen to be talented musicians.  Jill has been teaching our kids music for over twelve years, and Bob is a retired music professor from the University of Delaware.   Bob conducts the Wind Symphony of Southern NJ, they are a group of professional musicians who have offered to volunteer their time and talents to perform a family concert all "For the Love of Lucy".

Lucy and Jill, january 2014

We were excited about the idea of a Family Concert.  Music is a family activity in our house, it was something that we could all do together, and Lucy loved it!  Luc learned to hum, or sing music patterns, before she could even speak.  This ability gave us hope that our profoundly speech delayed little girl was going to one day speak, and speak she did!  

Music is universal, it speaks the soul, and Lucy's soul responded!  Let's face it, when you have a child like Lucy, although we never liked to focus on what she couldn't do, there are limitations to the types of activities that we could ALL do together as a family.  Music was something we could ALL do together.  

Last fall when we were planning the concert details we took a leap of faith and picked a concert date for May 3rd, 2014.   This was mainly because it was at the end of the concert season and when all of the musicians were available.  Never knowing what was going to happen from one moment to the next in our lives, we agreed.  God, apparently, had other plans for Lucy on May 3rd.  Sadly, on February 8, 2014 Lucy died peacefully and went to Heaven after fighting a courageous lifelong battle with mitochondrial disease.

Lucy's absence at the concert will feel enormous, but she will be there in spirit!  She would have loved this concert!  "Bill" choose music from many of Lucy's favorite Disney movies, the Lion King being one of those.  They are also going to be playing the oh so popular in our house and yours too I'm sure "Let it Go" from the movie Frozen.  Sophie sang this song for Lucy at her Valentines Day Funeral Service, and let it go I did.  Luc really only watched movies because of the music, she could never really follow a story line.   The music is what she enjoyed most.  Jack will be preforming with the group a piano solo from Harry Potter,  he has always loved the theme music from Harry Potter.  Luc would have been thrilled about this too, we liked to say in our house that nobody in our family could have a bigger fan than Lucy!  

We look forward to seeing you there.

Saturday, April 19, 2014

Your first Easter in Heaven...

What must Easter be like in Heaven?


When I close my eyes and think about you celebrating your first Easter in Heaven, I envision you with your arms raised, just like you are doing in this picture taken on Easter Sunday 2010, singing the praises of our almighty God.   You enjoyed the worship music in church, but only when you were in the front row.  I envision you right up in front, close to Jesus. 

But Jesus called the children to him and said, "Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these."  Luke 18:16

This season, not unlike every day, is so very very difficult without you.  Daddy and I, we cried hard today when we discovered a bag of treasures that you picked out last year to give to the kids on Easter.  You wanted to buy out the store, and we let you, at ninety percent off we couldn't say no to you;).

We are so proud of you Lucy girl, your life here on earth was remarkable, and now you get to live the most glorious life...a life without suffering!


Wednesday, April 9, 2014

One foot in front of the other...

One foot in front of the other, now do it again, and again...one 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 again...one 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

Meggie...



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 rjstreck@udel.edu