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One Hundred Days...

May 19, 2014

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.


About the concert...

May 14, 2014

"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"

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!

A Bleeding Heart...

May 12, 2014
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

Doing the impossible...

May 9, 2014
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

Circulate the Love...

May 8, 2014

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 and search by sponsor code Love of Lucy to schedule an appointment.
Contact to schedule an appointment.

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

Concert Tonight...

May 3, 2014
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  
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!