New Year's Eve...

It has been silent on the pages of this blog for quite some time.  My silence has been intentional.  Our life, it has changed so much in the past year!  It was at this time last year we were realizing our fate, our time with our sweet girl was coming to an end. I don't know what the new year has in store for us?  I am incapable of living more than one day at a time still, at...

The Fifth Annual UMDF Energy for Life Walkathon...

"Not doing something because it's too hard...well, that wouldn't be honoring Lucy, therefore..." For the Love of Lucy, please join us  Saturday, September 27th, 2014 For the Fifth Annual   United Mitochondiral Disease Foundation  Energy for Life Walkathon - Delaware Valley  At Campbell's Field Stadium   401 Delaware Avenue Camden, NJ 08102 Registration...

Seven Months...

My dearest Lucy Girl, I am in a mood today, not unlike most weekends.  Weekends are the absolute worst for missing you, every day is hard, but weekends are even more so! You died on a Saturday, but you really started "the beginning of the end" of your journey here on this earth on the morning of Friday February 7th.  I relive the last 48 hours or your life every weekend, no matter how much...

Lucy's Story...

It felt so good to be able to share our story, Lucy's story, for the Help our Kids Radiothon at AI today.  We LOVE to talk about Lucy!  We had fun giving live interviews to several of the radio stations broadcasting from the hospital cafeteria this afternoon.  Our kids were given a lot of "air time" and had a beautiful opportunity to share their Lucy stories and what is in their hearts....

Help our Kids Radiothon...

(Totally made them pose this way wearing their raidothon t-shirts...what you can't see is Megan and Sophie laughing their heads off) Nemours A.I. duPont Hospital for Children is hosting it's 4th Annual Help Our Kids Radiothon to benefit the children who are in need of the very best care.  We were invited to share Lucy's story, our family's story, for the radiothon this year.  We...

A New School Year...

Today marks the start of a new school year. Yet another change for our family, this year. For our family, for our kids, it's not just the start of a new school year, it's the beginning of a new life, a life without Lucy. Jack is starting 8th grade, Megan 6th, and Sophie 3rd.  Lucy technically would have started kindergarten, though she never would have actually gone to school, she was too...

Courage...

cour·age ˈkərij,ˈkə-rij/ noun the ability to do something that frightens one. "she called on all her courage to face the ordeal" strength in the face of pain or grief. "he fought his illness with great courage" synonyms:bravery, courageousness, pluck, pluckiness, valor, fearlessness,intrepidity, nerve, daring, audacity, boldness, grit, true  grit, hardihood,heroism, gallantry; More Our...

And Now She's Nine...

(Photo of her in her Lullaby League costume from the play the Wizard of Oz - July 2014) Today is Sophie's birthday, a much anticipated event in our house!  She is "finally" nine, her words not mine. To her dad and I it feels like she is nine going on nineteen or even ninety.  Seriously, this kid is wise beyond her years!!!! She is one truly amazing kiddo - so beautiful on the inside...

I was here...

We miss seeing her beautiful face everyday, and thought you might be missing her too.   Password: Lucy Warning: Tissue Aler...

We are doing the impossible...

My silence on the pages of this blog has been somewhat intentional. We are living with what is considered by many to be "the worst thing that can happen to a parent".  If truth be told, I've needed some time to process. I have been writing, it's just one of the many ways I try and process things.  I just haven't published a lot of what I have written.  Maybe one day I will...as...

For the Love of Lucy Forever Fridays...

It was right around the time Lucy died that our kids came up with a way of remembering their sister.   They and their closest friends devised a plan to each wear their Lucy Shirts on Friday, which quickly turned into every Friday.   At first, I'll be honest, I didn't notice the pattern.  It wasn't until Megan had a melt down in front of a huge pile of dirty laundry on a Friday...

Lucy in the Sky...

One of our all time fav's... Lucy in the Sky - September 2008 Ever since Lucy died Drew has been looking for Lucy in the sky.   This might sound silly to some of you, especially if you know my husband, an astute scientist who studies data and looks for trends and statistical significance.   He is looking at the cloud formations, looking for the letters in Lucy's name.    He...

One Hundred Days...

Drew and I woke this morning with that now all too familiar look in our eyes. The look that says, "I miss her!" One hundred days ago we thanked God for the precious gift of Lucy and then handed her back to him and said, "She's yours, take good care of her!" We reiterated to Lucy in her final moments how very proud we are of her, how she accomplished everything she was sent to this earth...

About the concert...

"Music speaks what cannot be expressed soothes the mind and gives it rest heals the heart and makes it whole flows from Heaven to the the soul" Annonymous The evening of May 3rd exceeded our expectations in every way!!!!  This has happened to us a lot recently.  We wonder if our little red-headed blue eyed angel in heaven has anything to do with this :). I want to thank all of...

A Bleeding Heart...

For Mother's Day the kids gave me a bleeding heart, we planted it in our garden today. A bleeding heart, how appropriate.   Today was impossibly difficult, not unlike everyday, but more so!   Thank you for your thoughts and prayers, they helped carry me through today. ♥ “Do not judge the bereaved mother. She comes in many forms. She is breathing, but she is dying. She...

Doing the impossible...

Mother's Day 2013 Every single time I walk out of my house without multiple bags overflowing with pumps and medical supplies, a list a mile long being checked off in my head before I can even think of backing out of our driveway, and a floppy Lucy with all of her tubes and fluid bags slung over my shoulder to be buckled into her wheelchair...just feels wrong. Going to bed before 1:30 am (Lucy's...

Circulate the Love...

Somewhere in this mess of pumps and tubes Lucy is receiving a transfusion of packed red blood cells.  You can see the dark red tubing on the far right pump.   Every six to ten weeks, sometimes sooner sometimes longer depending on her  health status, Lucy required a transfusion of some type of blood product to keep her body going: packed red cells, platelets, plasma... All of it...

Concert Tonight...

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...

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....

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,...

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...

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...

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,...