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