Cheers to 5 years…

When Madeline was diagnosed, my brain kept repeating “What are we going to do?”.  To say I was overwhelmed would be a supreme understatement.  I couldn’t think ahead, I lost that skill.  My internal clock was set right to RIGHT NOW.  I remember driving home from the hospital with Madeline, on our way to Target, I looked at Matthew and asked “What are we going to do?”.  The words that followed reset my brain and focus- “Madeline will tell us what she needs”. 

… And that she did way back then.

… And that she does right here and now.

In the days, yes only days, that she got to be here on Earth after we knew she had DIPG, the world carried us.  We spoke, others listened and amazing, important things happened.  After Madeline passed I wondered “What am I going to do?”… how can this world keep spinning, how can the bus still drive by, how is everyone not screaming out and standing still?  Yet… somehow she still kept telling us what she needed.  We knew that we needed to carry on her legacy, but I could never have imagined the beautiful network she would create. 

Out of the darkness and grief and fear and broken…. Out of the ashes… came a way to make Maddie’s Mark on the future.  All of the marks she should have made in this world, chalk drawings and hand prints in my future home’s sidewalk, scratches in my car when she learns to drive, art work she was supposed to make and votes that she never gets to cast.  Her Mark is different, it is all that she was and all those she connected and all the ways God sent light to us.  Maddie’s Mark is shining light into other’s darkness, carrying joy right next to others pain.  Her Mark is carrying those families, like we were carried.  Her light is embedded in me, that dark and painful hole inside of me is brightened by a light that never leaves.

I know that Madeline is ok, she is safe and fine.  She was an amazing gift that I only got to hold for a short time.  She is an amazing light that I get to carry and shine on others for my forever.  I wouldn’t trade a moment of it…

Last night the foundation we created to honor Maddie and to help her leave her Mark turned 5!  It has been 5 years of carrying Maddie’s light into others darkness, 5 years of her sending in connections and support.  I am in awe of what her legacy looks like now, what it does for others.  She must be crazy proud and grateful.  I love the work that we do, even when it hurts or it’s hard.  I love it when my errands for a day include stopping to drop off dinner to a family who has a sick child at home, or bringing fingerprint necklaces to Albany Med, or stopping at target for a tablet for a little who needs it, or meeting with a caterer for a graduation party for a child with Leukemia… I love my job.  I am pretty sure there is something I get to do to leave Maddie’s Mark.  It is the best.

I am sitting here, fighting a nap, letting it all sink in.  Yesterday my Treasurer told me that she had done some math, like she does all day long, and determined that we have put back $250,000 into the community.  In 5 years we have invested funds that were gifted by others to create ‘Best Day Ever’s’… to create spaces for families to enjoy their time and to try to raise awareness for Childhood Cancer.  When Madeline passed away funds were collected by many to help us with medical expenses, experiences and maybe funeral costs.  The thing is… she only got 5 days.  When she passed she didn’t get to enjoy all of those funds or reap the benefits of extra medical care… so that became the nest egg for Maddie to leave her Mark.  Those funds were how the first ‘Best Day Ever’s’ came to life…

$250,000.  Holy crap.  I can’t count the number of families we have encountered and supported.  I have no idea how many big Best Day Ever’s we have done, how many people we have entertained at events, I have no idea how many little one’s have played on the playgrounds we have created.  I have no idea how many souls have heard and connected to her- that have become more aware of Childhood Cancer, DIPG and the importance of enjoying time.  How many little girls have come to the Madeline Father Daughter Tea and twirled and watched in awe while the dancers danced?  How many families and nurses have joined us on Thanksgiving for a comfortable and beautiful dinner in the midst of their child being inpatient in the NICU or PICU?  How many children have enjoyed a graduation party, a remission party, trip to a waterpark, new bedroom or a backyard makeover while they are stuck in a very hard and scary time?  So many…

I sit today and reflect on the businesses, donors, kiddos, moms, board members, nurses, siblings and all the others who have been connected and enjoyed Best Day Evers with us.  What an honor…

Last night celebrating these 5 years at The Point was such a special gift.  In the golden glow of the lights there, surrounded by exposed brick walls and the most inviting long dining room tables- all meant to connect and laugh and enjoy… I felt so grateful.  I am so blessed.  We all are.  In all of the hardships and struggles- the joy and light ride along as well.  Life is about loving and accepting what we are handed- even the pain.  Madeline gets to make her mark and ride this journey right along with us. 

5 years and $250,000… what else does this journey have for us?  Where will be all be in the years to come?  Where will the connections we just made bring us?  One thing we should all remember is we don’t have control of this, that we need to enjoy this present and be prepared for Plan B… Plan B and C often trumps the plan…

Cheers to 5 years of making Maddie’s Mark, creating Best Days Ever, building better and accepting Plan B (or C or G) and embracing what He is creating… sometimes He gifts you a Madeline, other times He trusts us to make her Mark.


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