My Eulogy.....

I mentioned in an earlier post about Lucy's service that there were going to be some amazing people in our life giving tributes or eulogies at Lucy's service on Saturday.  The tributes were amazing!  In all there were six.  Listening to everyone's words...it was like listening to their hearts.  I will cherish those words forever!

Mine was one of the six tributes read at Lucy's service.  I thought I would share my words here...

A Prayer Card to Remember...

Thanks to our very talented friend Kimberly for designing the perfect prayer card for our girl. 

Lucy's Celebration of Life February 22, 2014

Is there such thing as the best funeral?!?  Lucy's service exceeded our expectations in every way, every detail exceeding the next.  It was perfect!  It was powerful!  It was exactly what we wanted, how we desired to honor our special little girl who was loved so-very-much!  I believe with all my heart that Lucy was there, shining down on us from Heaven in all of her glory, overflowing the church with love!

The tributes that were read were in a word....amazing!  The impact that our beautiful girl made in this world, I don't think we will ever fully know.  However, her impact on the lives of each of the individuals in that church on Saturday was palpable!

We devoted every ounce of time and energy in the past two weeks into preparing for both services we had for our girl, her Valentines Day service and her Celebration of Life service.  Yesterday, it kind of felt like the day after Christmas.  Now that everything is done, we need to begin the unbelievable process of learning to live life without her.

All of us woke with so much sadness, our hearts are hurting, broken into a million pieces.  We miss Lucy more than words can describe.  We love hard...this is often our response when someone asks us, "how do you do it?".  We often tell our kids that the reason they are hurting so so much is because they love so so much...

"Tis better to have loved and lost than never to have loved at all"
Alfred Lord Tenneyson

I wanted to post the video tribute that Drew and I put together for Lucy's service.  Did you know that we took over 60,000 photos and videos in Lucy's lifetime?  Don't worry they are not all in there, only five hundred :).  The video is fifteen minutes long and you might need a box of tissues while watching it...consider yourself warned.

Thank you to everyone who loves and supports us, we could never do this alone, and because of you we don't have to!

Lucy's Celebration of Life Service, February 22, 2014

The Password: Lucy

About the service...

We have been immersing ourselves in all of the details surrounding Lucy's Celebration of Life Ceremony in what feels like our last great act of love for our special girl, our Lucy.

Though Lucy's life on this earth was short, we have more than 60,000 photos and videos that we have collected!   I am proud to say that I have gone through all of the photos, but maybe not all of the videos, that will take me some time to do.  We find tremendous comfort in seeing all of the pictures.   I think if we were to print off all of the photos and flip through them we could probably relive Lucy's entire life, and drain our bank account at the same time.  We are putting a video tribute together, but don't worry it won't contain 60,000 photos, I promise.

I want to talk with you about a few things.  Things that I know we have had thoughts about when we have been in your position...

Going to a funeral is difficult, period.  Going to a child's funeral, it just feels wrong!  Children are supposed to grow up, not die!  I can recall a time when Drew and I were going to attend a viewing for a baby.  I was afraid to go, afraid of what I would feel, and what I would see... But then my very wise, and at times all too knowing, husband said to me and I quote, "It's not about you, it's about supporting others in their time of need".  So true, so true...

We are truly planning on celebrating Lucy's life on Saturday, and we want to invite ANYONE whose life has been touched by our little girl's life to attend.  All are welcome, young and old, we mean that!  Friends, loved ones, and those we have never meet but who "know" us either through the words on our blog or through the words of others...we want to meet you and hear your stories of how our special girl, our Lucy, had an impact in this world.  As parents, the greatest desire for our children is to know that they made a difference in the world.

We want to thank ALL of you who surrounded Lucy with love in her final weeks of life.  The overflowing LOVE was... simply amazing.  Thousands of cards, posters, stickers, decorations, hearts, affirmations of love, crafts, balloons, flowers, candy, cookies, works of art...were truly inspiring and are helping to carry us through the most difficult season of our life.  We are hoping to display many of these items at her service on Saturday.  Come out and see for yourself what it means to be surrounded in love!

Our hope is for the service to be powerful!  It will be full of love and remembrances from some of the amazing people in our life.  Though Lucy's physical body will not be present, her spirit will be!

We could never pull off a service of this magnitude without the time and energy, love and support of many wonderful people...to those people, thank you!

We are excited to celebrate with all of you Lucy Grace's amazing life...she will forever live on in our hearts.

One more thing, if you ordered a "For the Love of Lucy" shirt we want you to wear it on Saturday!!!  It will be a powerful statement of love to see all of those shirts together.  If you have not ordered a shirt yet, you're in luck, we extended the deadline for ordering until the end of the day on Sunday, February 23rd!  Click here to access the web-store.

Thank you for your love and support, thoughts and prayers.   We could never do this alone and are so grateful that we don't have to!

What do you say...

What do you say to someone who just lost their child…their baby?

There are no words that will take away our pain...the indescribable heart break...the emptiness that will always be the missing child in our family.

How we wish that your words could magically take away our pain, but that won't happen.  Our pain will always be there. In time we hope that we will learn to live with it better.  Our life will never be the same, but we have hope, there's always hope!

What we want you to know is that we very much want to share our grief with you!  

We want very much to talk to you about Lucy, and listen to you talk about her too.  Her name, her physical being, her scent, her voice, her touch, her physical presence here in our family on this earth…we miss it all, we miss her so so much!  Please help us to keep her memory alive, talk to us about her.  

One of our kids biggest fears is that no one will talk to them about Lucy ever again.  If I'm being honest here, it's one of our fears too.  We want to talk about her, we need to talk about her, we want and need to hear her name... she is and will always be a part of our family. 

The physical desire to want to be with her is overwhelming.  

The pain of missing her is indescribable. 

We never could have lived the life we did when Lucy was alive without the love, support, thoughts, and prayers of so many…this is especially true now that she has gone to Heaven!

Tomorrow, Valentines Day (I can't think of a more appropriate holiday for our very loved little girl), our family is going to have an opportunity to say our final good-bye to Lucy's physical body.  It will be a private service for just us, an intimate opportunity for us to physically lay eyes on her beautiful body one last time here on this earth.  Thankfully, we know we'll be reunited again...

Please keep us in your thoughts and prayers, we will need them. 

A Celebration of Life...

Anyone impacted by Lucy's life is invited to join us in a 

Celebration of Life Ceremony 

to Honor Lucy Grace Marlett on 

Saturday February 22, 2014 

at Willowdale Chapel, 

675 Unionville Road, Kennett Square, PA 19348

You are invited to visit with Lucy's family from noon until 3 pm.  The ceremony will begin at 3 pm, immediately followed by a reception at Willowdale Chapel

 A research fund "For the Love of Lucy" has been established by her family and The United Mitochondrial Disease Foundation to help find a cure for Mitochondrial Disease.  In lieu of flowers please make a donation for the love of Lucy at http://www.umdf.org/fortheloveoflucy 

To view Lucy's online tribute or to share a memory with her family, please visit http://www.tributes.com/Lucy-Marlett

For the Love of Lucy T-shirts AGAIN...

For those of you who missed the first ordering opportunity…

 or just want more shirts…

 or even a hooded sweatshirt now being offered, 

you can purchase your for the Love of Lucy apparel here.

http://www.kellysteamstores.com/For-the-Love-of-Lucy

We will keep the store open until Monday February 16th!!!!  

Order to your hearts content, knowing that you are supporting a cause that is so very near and dear to our hearts.   

 Thanks for loving our girl!

All procedes will go to the "For the Love of Lucy" research grant established by our family and The United Mitochondrial Disease Foundation.

Surrounded in Love...

Our brave girl, our little fighter, our hero, an inspiration…

Lucy Grace Marlett 

March 12, 2008 to February 8, 2014

Surrounded in love by family and friends
while wrapped in her Mother's loving arms

 Lucy Grace Marlett died peacefully and went to Heaven at 7:34 pm
on Saturday, February 8, 2014.

Our hearts are broken, but we rejoice in knowing that our girl is finally healed!
Please continue to pray for us as we learn to live life without her.

It's Time...

I am in disbelief, but it's time to say good-bye…

An early Birthday...

Yesterday we celebrated Lucy's 6th birthday early, the kids REALLY wanted to do this for their sister.  They planned everything from the guest list, to party games complete with "good" prizes, and of course the decorations.  

It was a "Handy Manny" themed party, sort of.

If you didn't already know, our girl, she loves Handy Manny!  Jack made for Lucy out of paper all of Manny's tools and tool box.  Jack is an origami whiz, he can make just about anything out of paper.  Anywhere that Jack goes, the origami is sure to follow:).

Lucy's actual birthday is not until the middle of March, the middle of March feels too far away.

This week has proven to be a really difficult week for our girl.  Her pain was out of control on Monday. By Tuesday she was miserable but we could not increase her narcotic medications any more.  We believe that the opioid receptors in her brain are saturated and as such cannot absorb any more narcotic medications.  She is proving to everyone yet again just how impressive she is, the amount of pain medications that she is taking in is unbelievable!  In an effort to give our girl the comfort she so deserves we started her on a continuous infusion of a sedative medication in addition to adding another pain medication that targets different pain receptors in the brain.  This combination of meds appears to be working at the moment, and at the moment we are grateful for this.

Our palliative team discussed with Drew and I this week that we are faced with having to decided between a more alert Lucy who experiences pain, and a sedate Lucy who is not experiencing pain.  Seriously, there are no easy decisions e-v-e-r!  In an effort for Lucy to be more alert for her party, we dialed back a bit on her sedative med so that she could be awake and enjoy the kids and festivities.  It worked for a short period of time, but then the pain returned and so too did the continuous infusion of sedative medication.

Lucy was very specific about what the menu was going to be for her party.  In her softest weakest voice ever she very clearly requested pizza, vanilla cupcakes with white frosting, and a purple heart cake.  Keeping in mind that she can't eat, we believe that she enjoyed the food more than anyone at the party.  Our dear friend Gina went above and beyond and poured her love into making Lucy the most precious purple heart birthday cake and cupcakes.

We sang Happy Birthday for her three times - the traditional way, in Chinese thanks to our friends the Puffs who have been learning Chinese while living in Hong Kong, and the elementary school way complete with cha-cha-cha's.  Lucy loved it and even tried to clap her hands after each chorus.

When you ask Lucy how old she is going to be just she just shrugs her shoulders.  In my mind she will always be my baby.

I fought back so many tears, the thought of our little girl not being here with us anymore to celebrate any more birthdays, it was too much for me think about.

Last Day to Order your "For the Love of Lucy" shirts….

The deadline to order your "For the Love of Lucy" t-shirts is today!  

Follow this link to the online store 

and order to your hearts content!

ALL proceeds will benefit The United Mitochondrial Disease Foundation where we share in the hope of one day finding a cure for Mito!

http://www.kellysteamstores.com/For-the-Love-of-Lucy

Thank you for supporting us in a cause that is so very near and dear to our hearts!
We also want to say a special thank you to Kelly Sports for their generosity and support, 

we could never do this alone!

Waiting on Him...

I can't even begin to tell you what the past few weeks have been like…there truly are no words to describe it.

At times we have a peace about Lucy dying that surpasses all understanding.

Other times, I can honestly tell you that this experience equates to the worst human torture.

Waiting for and watching your sick child die…it's indescribable heartbreak!

How are we doing?  That's a loaded question!

We are trying our best to live in the moment.  We are loving our girl with ALL of our hearts.  Thinking about the future is painful, living in the past is too, but being present is something that we can do.  We have been and continue to be surrounded with love from family, friends, doctors and nurses - whom we affectionately refer to as or "medical family", and by people we have never met but whose lives have been changed just from hearing about our special family, our special girl.  We could never do this alone, and are so very very grateful that we don't have to.

Despite all of the medical complexities, increase in pain, and overall physical decline, we have had some amazing moments during the past two weeks in which we have seen our girl sparkle and shine in ways we haven't seen in months.  Our medical team described these moments to us as being spurred by a euphoria due to an altered state of body chemistry. They refer to them as "golden moments" or gifts that a dying person gives to those they love before the die.  Whatever the cause, we will be forever grateful for these moments.

The decisions that we have made throughout Lucy's life have helped to determine how long or short her time here on this earth would be, but ultimately it has always been in God's hands.  He's known from the moment she was created just how her life would end here on earth and when her eternal life would begin.  "All the days ordained for me were written in your book before one of them came to be." (Psalm 139:16)

The past few weeks and the days or weeks ahead are the definition of waiting on God's timing...we are waiting on Him.