Wednesday, December 31, 2014

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 times even that is too much.  Grief is a journey, and a journey we are on.  

This year, in an effort to survive the enormity of emotions that accompany this season, our family has "run away" for a while.  We are seeking inspiration and joy in the midst of our grief.  You can follow along with us on Instagram if you like, our user name is "allthemarletts".  You can also link to our Instagram images in the upper right hand corner of our blog.

Thanks for loving us and supporting us like you do, we could never do this alone.  We don't have to, and for that we are so grateful.

 

Sunday, September 21, 2014

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 begins at 7:30am, team photos at 8:30am, 
with the 3k walk around the riverfront to begin promptly at 9:00am!

You can register to join and donate to our team here!

"We could never do this alone, we don't have to, and for that we are so grateful!"

*Please wear your "For the Love of Lucy" T-shirt*

Monday, September 8, 2014

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 we try to keep ourselves busy or occupied, I can't forget it, I will NEVER forget it.


I can remember with acute accuracy what we were were doing when seven months ago.  At this exact moment seven moths ago  I can remember holding you in my arms for the first time since you were admitted to the hospital on December 16th.  Your hurt so much baby that you didn't want us to hold you.  But on this night, the night of February 7th, you gifted me one of the best gifts of them all, the ability to rock you and hold you in my arms, even shaking your head "yes" when we asked you if you wanted us to hold you.  You were in my arms, allowing me to breath in that oh so familiar Lucy smell from that special spot on the top of your head.  The smell that we have gone in search of in so many of your belongings since your death.  I can remember finding daddy in your room in the middle of the night, shortly after you died, desperately searching for your smell.  Your smell instantly brings us closer to you, I can't explain it any other way.  Oh how my lips ache now from not being able to kiss your forehead,  your sweet sweet lips, or that spot on your neck that was just the perfect fit for my lips to kiss you and my nose to nuzzle into you.


 This weekend your absence is hitting me hard, slamming into my heart and mind - tomorrow marks seven months since you left my arms and flew into the arms of Jesus.  I can only imagine that His love for you is so much more than ours!  I know deep down in my heart that you wouldn't have left us so peacefully if that were not true.  Not a day goes by where we don't wonder what your days in Heaven are like.  Sometimes we joke and say that we won't recognize you when we get to Heaven because you'll be so "fat" from eating all of the yummy food that you were never able to eat while you were here on this Earth.  But then we say, we certainly hope that we don't have to worry about our waistlines in Heaven :).


We had a wonderful opportunity to share your life with others last week, we shared your story for the Radiothon at the hospital.  It's oh so very difficult to walk into that building without you.  I tear up every time I drive through those gates at the entrance of the hospital.  Those gates, they are a reminder to me of the many times I breathed a sigh of relief knowing that we were just moments away from getting you the very best care you needed to feel better.  The people who frequent the halls in that building, they are our "medical family".  Walking those halls without you in your wheelchair is NEVER easy, but it is also like coming home to visit family.  There is nary a corner or doorway that I pass where I don't run into someone who knows and loves you.   What we have experienced together will forever bond us to them.



Helen met us at the hospital to support us while we were at the Radiothon.  Luc she misses you so!  We ate dinner together in the cafeteria for the first time since February.  The grumpy cafeteria worker who liked to ask me, "Why only 1 French Fry?", every time I took you to the cafeteria was working.  He said that he has missed us, really?   I told him that you had died.  It's never easy to say those words...

As we were walking out of the building on Thursday the kids were jumping from colored tile to colored tile, like always, being careful to not step on the blue ones :).  Helen looked teary eyed.  We were both recalling that night, the night you died, the last night we walked that hallway together pushing your empty chair, barely able to step in the direction we were facing.

Luc, I don't know how I've survived this long without you...but I'm doing it baby.  In honor of your extraordinary life, I get up everyday and do the impossible...live life without you.

Your life, it was/is extraordinary and we are always in awe of how many lives you impacted and continue to impact.  We truly believe, girly, that your death is not the end, but rather the beginning of your journey.

We long to hold you again, breath in your Lucy scent, and kiss you in all the same places we kissed you before...

Like we promised you...we're coming too, we'll be there, just not yet.

Thursday, September 4, 2014

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.  Our family was there during "crunch time", the energy in the cafeteria was palpable. When we arrived at 3:30 this afternoon the total donations raised were $144,000, impressive, right!  By 6:00pm the final tally was $257,753!

I was given permission to share "Lucy's Story" that was created for the Help Our Kids Radiothon here...

(Warning - you might want to have some tissues available to you when you listen;)



There was a second version of "Lucy's Story" created for the Radiothon that includes the kids and Drew...


Wednesday, September 3, 2014

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 are honored to be able to tell others about our special girl and just how extraordinary her life is/was!  

"We could never have lived the life we did with Lucy if it wasn't for this hospital.  They helped us to give her the best longest life...they really did!" 

For the next two days, Spetember 3rd and 4th,  the hospital is broadcasting live from the cafeteria on seven different radio stations in the Delmarva region.  Our family's story was pre-recorded(for obvious emotional reasons :), and put to music by one of the very talent DJ's involved with the radiothon.  He referred to the piece that he put together for Lucy, as "the story".  I'm not so sure about that, there are many amazing stories being told.  I do know that what he created from our interview is powerful, beautiful, and honors the hospital, Lucy, and her extraordinary life.  

We would be honored if "For the Love of Lucy" you considered making a donation to a place that we affectionately refer to as "our home away from home".

You can make an online donation by clicking here.  
You can also call 1 855 NEMOURS(636-6877). 

Jack, Megan, and Sophie will be volunteering tomorrow afternoon (September 4th after school until 6pm) answering phones for those who call in and make a donation.  Drew and I will be there too, talking with the various radio stations, sharing about Lucy's life and our experiences at AI.  I know the kids will be thrilled if you called and asked to speak to one of them to give a donation to the hospital in honor of Lucy.  It will make their day!

We are honored to be a part of the Radiothon, and to be able to give back to a place that has given our family so much!


Monday, August 25, 2014

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 medically fragile.  All of her education and therapy services were done in our home.

I dreaded the thought of actually having to sign Lucy up for kindergarten.  It's a process for any family, but when you have a child like Luc the process is so much more than just registration.  It's about evaluations, IEP meetings, letters of medical necessity, and more meetings.  It hurt to think about how different her education was compared to our other kids, so I tried not to, only I'm human and not thinking about it was impossible.

Impossible, is what I am facing today, the fact that I don't even have the opportunity to dread/celebrate her actually starting kindergarten.  I'm so sad about this...

FYI, we would have made a big to do about her staring kindergarten:).  Our enthusiasm for her carried her for miles!  Doesn't it for everyone?

New school year, new school supplies, new schedules, new teachers, new relationships...new life, it's not easy, but we're doing it.

It doesn't always feel like we're doing it, in fact there are days where it feels like we are at a stand still, barely moving at all, but we're doing it even if we are just holding our position.

Some moments are harder than others, and every day is hard!  No matter how it appears from the outside, it's hard!

I am so proud of my family, my three kiddos who are continuing to live life in spite of their circumstances.

There were tears shed about missing Lucy, fears about meeting their new teachers and making new friends, and concerns for what to do if their grief gets the better of them.  We talked a lot about it.  Change is hard, and grief it sucks...the life out of you!

Each of them wore their "For the Love of Lucy" shirts today, as well as took a picture and small memento of her with them to school.   My hope and prayer is that it helps them to feel connected to her and more secure in this world of uncertainty.

One foot in front of the other...it's what I tell myself everyday and what I told them to do this morning.

We can do this!  It won't be easy, but not doing something because it's too hard...well, that wouldn't be honoring Lucy.

Everyday in honor of Lucy we get up and do the impossible, learn to live life without her.

Wednesday, August 20, 2014

Courage...



cour·age
ˈkərij,ˈkə-rij/
noun
  1. 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, nervedaringaudacity, boldness, grit, true 
grit, hardihood,heroismgallantryMore


Our four amazing kids, my husband, they are the definition of courage!  Last year at this time we were at the beach creating memories to last a lifetime.  



We can't believe that was a year ago!  Today, three of our four kiddos and their dad are spending the day at Hershey Park, one of Lucy's all time favorite places.  She loved it there, not sure why exactly as it's an amusement park and she was not really capable of riding many of the rides, but the smell of chocolate was everywhere :). Luc would often dream of eating all of the peanut butter from all of the Reese's Peanut Butter Cups, silly girl.  I chose to stay home today, to work in solidarity on some things that need my undivided time and attention.  To be honest, I'm not much of a roller coaster girl myself, the last six years have been enough of an adrenaline rush for me, thank you very much.  But also, I think I want my memories of Hershey park to be the ones that I have with all six of us.  I'm OK with that, and so too is the rest of my family.  Figuring out how to live life without Lucy...it's by far the most difficult thing we will ever have to do in our lives, it requires courage - strength in the face of pain or grief.

Tuesday, August 19, 2014

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 and out!

What she has experienced in her nine years on this earth, many have not experienced in a lifetime.

Last night she was praying and asked God to give her the strength to get through today without Lucy.  Cue the Mama's tears!   She told God how she is going to miss having Lucy blow out her candles with her and sing "Happy Birthday" over, and over, and over, and over...

Beautiful, smart, silly, independent, faithful Sophie we love you and hope that Nine is everything you want it to be, and then some.

Monday, August 11, 2014

I was here...


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

Friday, August 8, 2014

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 now I am feeling too vulnerable, too emotional.

It's impossible for me, for us, to believe that today August 8th, 2014 at 7:34pm marks six months, 181 days, 4,344 hours since our Lucy died and went to Heaven.

Impossible!

Six months, a half a year, feels like something we should commemorate, it's a substantial amount of time.

I believe that I have discovered one of the many places where evil resides...it's in the numbers, dates that hold significance to an emotional event, the clock, the calendar...

In so many ways, it feels as if her death just occurred, and in other ways it feels as if an eternity has passed.

I think it goes without saying, we miss her more than words can describe!  More often than not I'm unsure of how I'm going to survive one more minute without her, but I promise to God, to Lucy, myself, and the rest of my family that I will continue to do my best with what I have, and try!

I know I've said this before, and I'll probably say it for the rest of my life, everyday in honor of Lucy we get up and do the impossible...attempt to live life without her.


Thursday, August 7, 2014

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 morning just weeks after Lucy died that I was clued into the pattern.   Crying to me inconsolably, Megan told me through her tears that she NEEDED to wear her Lucy shirt because it was FRIDAY.  

Out of curiosity now,  I asked her what the significance of wearing her Lucy shirt on a Friday meant.  

To her, it meant the world!  

Wearing her shirt every Friday was her way of keeping Lucy alive in her heart and the hearts of so many who love and support her, Lucy,  and our entire family for that matter.  

Tomorrow Friday August 8, 2014 marks six months since Lucy left this earth and ascended into Heaven where she will live for eternity.   If you are one of the hundreds who own a Lucy shirt, would you please join us in wearing your Lucy shirt tomorrow on what will be not just another For the Love of Lucy Forever Friday, but the six month anniversary of her death. 

It would mean the world to us, to our kids!

We could never do this alone, we don't have to, and for that we are so grateful! 

Wednesday, June 18, 2014

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 takes pictures of the cloud letters and then shows them to me, asking me if I see what he sees.  

I love that he does this.  

I love that he is looking for her, in the sky nonetheless.  I mean, who doesn't know the infamous Beetles song "Lucy in the Sky With Diamonds"?  

It doesn't make any sense, but neither does the death of a child.

On Monday night when we returned home from a marathon day, Drew called to me to look up in the sky.  For a very brief moment there was a cloud formation that looked as if it read "Lucy", every letter in her name was practically visible.  

Just as quickly as it appeared it disappeared; too fast for us to even photograph, but we both saw it.  Lucy in the sky...  

He's one of the best!  Lucy and Daddy - January 2014


Monday, May 19, 2014

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 to do and was now free to go, how much we love her, and that we will see her again soon.

For Lucy, we have been told, that it will feel like a blink of an eye and then we will be there in Heaven with her for eternity.

For us, one hundred days feels like an eternity...

How are we?

We are like a family on a wire, one wrong move and we all fall!  We are here for one another, and we don't for one second take that for granted!

Grief is fierce.

Feelings just are.

We miss the way life used to be.

We miss our girl.

One hundred days ago I had no idea what this type of pain felt like, NO idea.

One hundred days ago I never imagined that I could live one day without Lucy, let alone one hundred days.

One hundred days ago our life forever changed in a way that will never be able to be "fixed".

One hundred days ago I only knew the myths of grief, now I am beginning to understand the realities.

One hundred days ago Lucy took with her a bit of all of our hearts.  She is keeping them with her until we meet again, where we will once again be made whole. 

One hundred days of grieving, it's only just the beginning, we will grieve for the rest of our lives.

 

Tuesday, May 13, 2014

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 you who came out for a lovely night of music and remembrance.  It was a powerful evening!  We continue to be humbled and stand in awe of the love and support that surrounds our family.

Our fears vanished as the concert hall began to fill.  The kids Lemonade stand was a huge success, thank you for supporting them.  Your $1.00 donation, multiple it times a million, because to the kids that is how proud and thankful they were to be able to contribute the donations to Lucy's research fund.

Thank you for supporting us in our efforts to raise awareness and funds for a disease that, whether we like it or not, has forever changed our lives.

Even more so, thank you for loving our family, our girl, and telling us how much you miss her and how her life has changed yours.  As parents, as a mama, hearing your words, sharing your grief with us, it is perhaps the best gift you could give to us.

I may cry when I talk to you, please don't be afraid, my tears come from an overflowing heart.

To continue to hear that Lucy's life made a difference in yours...that is the ultimate gift of her life.  Her life mattered, my heart believes that is what God intended for her life, to matter.

All of the musicians who volunteered their time and their talents to perform the perfect family concert in honor of Lucy were in a word...amazing.  Thank you!

We were honored, our Lucy Grace was celebrated and acknowledged, and we were moved to tears by the love and passion that filled the room.

Many of the music selections were based off our four kiddos recommendations.  We were not at all surprised to hear lots of Disney movie music; selections from Toy Story, Frozen, and Lucy's favorite the Lion King.  She loved the "Circle of Life".

Bob invited everyone in the audience who knew the words to sing along to the music from Frozen.  There were lots of little mouths seen singing "Do You Wanna Build a Snowman" and "Let it Go".  Sophie, Megan, and even Jack (shhh, don't tell him I told you:) sang their hearts out!

In addition, Bob selected a few more traditional pieces to play.  His selections were so meaningful, sharing with us, the audience, his reasons for why he choose the pieces he did.  All of them had a personal meaning to Lucy.  

Jack's debut performance was (pardon my boasting:) AWESOME!  Just before we arrived for the concert he prayed for just some of Lucy's courage.  He wanted to honor her by being brave and not allowing stage freight to overcome him.  He also wanted to WOW the audience by nailing the piano introduction to Harry Potter.   Go ahead and listen for yourself, he won't mind :).

Our friends Bob and Jill, if I haven't mentioned it already, they are amazing!  Thank you for all that you do for us, for your love and support, thoughts and prayers.

We could never do this alone, we don't have to; for that we are so grateful!

Sunday, May 11, 2014

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 may look young, but inside she has become ancient.
She smiles, but her heart sobs.
She walks, she talks, she cooks, she cleans, she works, she IS,
but she IS NOT, all at once.
She is here, but part of her is elsewhere for eternity.

Author: Unknown

Friday, May 9, 2014

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 last med of the night finished infusing at 1:30am), it brings me to tears almost every night.  We can just roll over and turn off the light.  Really, we can just roll over and go to sleep, before 1:30 am.  No more need to infuse meds, set alarms to remember to flush a med, check infusion pumps and line pressures, monitor vitals, or kiss those sweet sweet Lucy lips one more time.

Waking up after 5:30 am (Lucy's first meds of the day began at 5:30 am) feels just as strange, but doesn't quite bring me to tears as often as going to bed before 1:30 am.

Waking up every morning and seeing the sun shining through the window in her bedroom illuminating her empty bed, it highlights our reality.  She's really gone.

Folding the laundry, a necessary task that needs to be done in every household, it kills me every time.  I miss her scent, her tiny socks, her cute pajamas...Every now and then Sophie will throw something of Lucy's in the laundry.  I think she thinks it will make me feel better, and maybe I won't cry when I fold the laundry.  I love how she thinks, love her.

For Drew it's something as routine as taking out the trash, we have half of the amount of garbage that we used to have when Lucy was alive.  We no longer receive a dozen or more boxes a week of medical supplies which means we have less recycling now.  Though some would see this as a good thing, to him, to us, it's just another reminder that she is no longer here, she's gone.

I have canceled all of the email offers from retailers that I formally would have purchased clothing from or special items for Lucy.  I have also canceled or throw away any catalogs from children's or special needs retailers.  To me, they are "in your face" reminders of what I am missing.  Buying for three and not four, it's awful!

All of us continue to tip-toe around our house as if our Sleeping Beauty is sleeping in the next room!  Sometimes it makes us laugh that we do this, and sometimes it makes us cry, it just depends on our moods.  My instinct is to "ssshh" everyone when they walk in the door from school, you know what they say about old habits.

There is but a wall that separates our shower from Lucy's bedroom. You would be even more impressed with us if you knew what it took for us to take a shower everyday when Lucy was alive.  She was the world's lightest sleeper, she would almost always hear the shower turn on if you got in it after 6 am.  If Luc woke up before she was ready...ahh let's just say that was disaster of epic proportions for a kiddo with an energy deficient disease.  Now we can take a shower whenever we want or need to, this is something that we just can't or don't want to get used to, not sure which.

The smell of just about every hand soap and hand sanitizer, or "hanatizer" as Lucy called it, reminds us of her!  I don't think I will be able to set foot in a Bath and Body Works store ever again.  Did you know that the sense of smell is the most powerful memory trigger?  It's because the olfactory nerve is located near the area of the brain that registers emotion and memory.  I can attest to this, I can barely stand on my two feet whenever I smell something that reminds me of her.

We would buckle and unbuckle Lucy's wheelchair into our van as fast as a Nascar pit crew changes tires on a race car,  we no longer have to do that now.  Her chair has been buckled in our van since the day of her funeral, when it's not in there I can't drive my car, it's just too painful to see the empty space.  We have no plans right now to do anything with any of Lucy's things, they are where they have always been in our house.  Her things bring us comfort, the thought of having to do anything with them hurts too much.  However, our van is something that we are in need of selling, we no longer need it, and I am having a terrible time driving it, even with her empty wheelchair buckled in the back.

Watching my husband and children grieve, try and figure out how to live life without Lucy, this is perhaps the most difficult thing to witness.  No matter how much we focus on the positive, the benefits of having a kiddo like Lucy, how our faith plays a huge role in how we handle living life, none of it takes away the pain of loosing Lucy.  Grief will forever be interwoven into the fabric of our being, it is part of our testimony, our kids testimony.  

Mother's day, this year feels cruel.  When asked the inevitable question, "how many children do you have?"  I will always answer four!  If you are so bold to ask me their ages, well you might just need a tissue to handle the answer.

Everyday in honor of Lucy we get up and do the impossible...attempt to live life without her.

Mother's Day 2013

Wednesday, May 7, 2014

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 was life sustaining for our girl.  Without donors, she would not have lived as long as she did.


For the Love of Lucy Blood Drive
Thursday, May 8th, 2014
3PM - 8PM

Please visit http://www.redcross.org/make-donation and search by sponsor code Love of Lucy to schedule an appointment.
or
Contact harrell@avongrove.org to schedule an appointment.

Donor Eligibility Guidelines: Click here or call 1 800 RED CROSS
Donation Tips (including tips for after donating): Click Here

Saturday, May 3, 2014

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 cards will also be accepted on the day of the concert.  
To reserve tickets click here or contact rjstreck@udel.edu  
or call 302-239-8281
Tickets will be available for purchase at the door.

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

Jill and I met for lunch last week.  She and I have been doing this regularly since Lucy died.

She loves to talk and listen to stories about Lucy, as do I.

Our conversation steered toward the benefit concert for Luc when she said to me, "I have two fears(referring to the concert).  One, we will be overwhelmed with the number of people who show up on Saturday and not be able to handle the crowd efficiently, because at this point we really have no idea how many people are coming.  And two, no one will show up."

"Yep, that pretty much sums up my fears too," I said to her.

For we live by faith, not by sight 2 Corinthians 5:7

My kids, they are my inspiration!  

Lucy will be there, in spirit, I know because she has been helping Jack all week perfect Harry Potter :).

Jack, Megan, & Sophie are so excited!!!  In addition to the concert, they are going to be selling pretzels and lemonade tonight.  Never walk by a lemonade stand...

Praying for today to be all that we hope it will be.  See you tonight!


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