Thursday, March 12, 2015

Today it's her birthday...


Today, she would have been seven.  As hard as I try, I can't even imagine what she would be like as a seven-year-old.  I believe this is partly because we lived in the moment with her, fearful of what the future held.  We became experts at living in the present, focusing on what we had right in front of us, loving her for who she was, and not what she could become.  We are so grateful that we were able to have that focus, it was a survival tool.  I suppose this is one of the many transformations that happened to us as her parents, parents to a special needs child, a medically fragile child.

It's difficult to know just how exactly to celebrate her birthday, her death anniversary, Mother's Day, Christmas, the Fourth of July....or really, any holiday without her.  Hallmark hasn't cornered the market on this yet.  Last year we did a toy drive for the hospital in her honor to celebrate her birthday.  This year I just don't have the energy or the emotional capacity to coordinate anything of that magnitude.  You can donate to her research fund at the UMDF.


There will be cake, however! She wouldn't want it any other way.  But the cake has to be, "only a'nilla!" Translation, only vanilla!  For someone who never ate cake, she sure was firm on the flavor she wanted.   There will also be balloons, a doc McStuffins balloon at that, she loved balloons.  Last year the kids did a balloon release, sending their birthday messages to Heaven (Please don't leave a comment about the environmental impact this has on the world. Trust me when I say there are far fewer balloons released since Lucy died than when she was alive :).


When I think of her birthday, I think of each and every year we celebrated her life.  I am so thankful that God gifted us such a special, amazing, extraordinary little girl.  To us, her time here on this earth will always feel too short.

Happy 7th Birthday Lucy Grace!


Sunday, February 8, 2015

Remembering...

Today has to go down as one of the hardest days since Lucy died. Like Lucy, we felt surrounded in love.  Thank you for all of your thoughts and prayers.  We could never do this alone. 

I wanted to re post this video, we watched it over and over again today both laughing and crying.  We are so very grateful for the memories!

Password:Lucy

One year...

Three hundred sixty-five days, 8,760 hours, 525,949 minutes ago our lives forever changed!  It seems impossible to us that it has been this long since we last held our sweet sweet girl, and yet we know that when compared with eternity this life is short!


 Today, like everyday, we will celebrate and remember the extraordinary life of our little girl, 
Lucy Grace Marlett
March 12, 2008 - February 8, 2014

You make known to me the path of life; you will fill me with joy in your presence, with eternal pleasures at your right hand.  
Psalm 16:11


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...