In my time…


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Sometimes… the missing is so big. Other times I wander through life far too busy to let the missing feel big… I guess we could label that as most of the time. I am so very guilty of not sitting in my pain, and I feel it right now. I am fighting the urge to call a friend and go out to laugh, to turn this part off. I know that a Friday night out listening to a band and eating onion rings would fix this part, it would band aid up the hurting. I could do just that, I know how, I do it far too often. That exact behavior has gotten me to this very spot. I would love to leave this spot, but not just for tonight, for a time. I have a pile to sit in, a shovel full of emotions to feel and a lake full of tears to cry.

Grief is like that… fine for a time, amazing for some moments and then boom… broken again. I believe it will always look like this; my forever looks different that the forever of a mom who gets to wake up here on Earth with all of her kids on Mother’s Day. The missing never leave, you just realize that the world keeps on spinning, others move forward and consequently I must move forward too… tiptoeing sometimes, hiding others… working, watching baseball games, parenting, driving kiddos and all those other things that never feel just right anymore. I remember way back when; when those tasks and many others felt natural to me. I love my life, but so often I feel like a shell of a mom missing a big chunk of me as I watch those games and see those plies and all the dog chasing, they do now-a-days. I miss feeling whole, but I imagine if I felt whole right now I would not be honoring Madeline’s space in me.

Why now?

I don’t know really why these days hit so hard. I feel lost in my faith, though I know that right now He still is my rock in these stormy seas. I feel lost in my life, like I don’t know what direction to head in next. I need to find a way back to being still and checking in with myself, all of which looks different than it used to. I am so tired, tired of getting through Mother’s Day and not feeling like it is a special day. I smile and nod and laugh, but really I am missing the breakfast in bed Madeline never got to bring me… and the cards and experiences I never got to have with her. The other, more full part of me, loves all the bits with my girls that are here as they write me the most special and honest reasons that they love me. Lucy loves so simply and candidly; Amelia always has a sas or a sparkle… a little bit of fairytale. I freakin’ love them…

I imagine who my Madeline would be… and I wish she got to be a difficult and stubborn teenager. I wish I got to see her faith grow, her smile at National Junior Honor Society Induction… she would be totaled annoyed and impressed when I told her I used to be the NHS Treasurer- she might even wonder who the hell would have voted me for that role. I wonder what parts of me she would pick on, what she would be proud of… would I still be a runner, would her favorite place still be the lake… would her cousins still be her best friends??? One can only wonder…

What is it about this time of year, or is it all parts of the year but this is the time I can just break down? I am sure it is a compilation of all of the piles together. Grief and missing are complicated. For tonight, I will fight the urge to head out and seek a distraction, I will sit in it. Right now I sit in the surprise sunlight that joined us this evening… eating Italian bread and letting my face get warm on one side. Stillness is a big part of the healing, over and over. I imagine that when I am 45 and 58 and 60 whatever I will still feel this intense heaviness and need to sit alone and feel all of this emotion, to process all that is missing… to recognize the lack of Madeline in my moments. I’ll never know why this is the life I have, why I have to miss and feel all of this… somedays I wish for different, but tonight I sit in this.

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The Mission is in the Stories…

Some say 7 is a lucky number, The Lucky Number 7. I don’t know if it holds any luck for me, but I know it holds love and pride. 7 years have gone by, I sometimes think of them as a blink- a quick moment that passed by… other times it feels as if it was a lifetime ago, a million plus years. I guess it has been a lifetime, many moons and turns around the sun.

Madeline left this world far too abruptly over 7 years ago, and soon after she guided us to begin doing her job by fulfilling her legacy. It has been 7 years, this April, since the Maddie’s Mark Foundation officially began its work. I remember way back then, before we had everything set up, we had already begun a Best Day Ever… for Naomi. I miss her. I never discount the importance of connection… that is often where the gift- or maybe the ‘lucky’ lies.

Maddie’s Mark Foundation has been working through the support of donors, volunteers, board members, grants and local businesses for 7 years… 7 years of creating Best Day Ever experiences. What an honor to be entrusted with these moments, especially knowing how important those moments, photos and keepsakes are. I don’t know what life would be like if any of Madeline’s last moments were different, though I wish everyday there were a million more moments to watch her giggle and color and explore.

These past years have been full of connections and love and hard… so many of the amazing families we create experiences for now know the extraordinary loss of their lovely. These Best Day Evers have offered a teen a prom after he missed his, celebrated the last Christmas with a purple tree and the whole community caroling, created a stage for a senior to graduate with her family all there before her stem cell transplant… a getaway to the Sagamore, spending last days at the beach, visiting ‘heaven’ on Earth, trips to dream football games, last birthday parties, keepsakes from The Pottery Place… all of it. It is a privilege to hold some of those moments in my memory and to be connected to those souls. I always, always hope that when they head to heaven, they hug my Madeline for me…

We celebrated our 7th Anniversary last week, at The Point Restaurant in Albany. In a perfect and golden lit space, we celebrated our ‘Lucky Number 7’… it was perfect, some might even call it a Best Night Ever. I love the atmosphere, the music, the drinks… mostly the energy, the energy I receive and the energy that reminds me that Madeline is right here ridin’ next to this life, telling me what to do… maybe heaven isn’t so far away.

This year I went GOLD, I mean gold is lucky and fit into the Roaring 20’s theme. I love getting dressed up, I LOVE HAVING FAKE EYELASHES. I love how fun it is to go from yoga pants, sports bras and stinky sneakers to Glam- it makes me feels special and sparkly, I love to feel special and sparkly. I gotta say when life is really hard, when days are really dark and my shoulders feel the heavy weight of grief… there is something powerful about being special and sparkly. It reminds me on those hard days, in those heavy moments… chin up, there is still special and sparkly in the world, and time moves and light comes.

I love the whole night of our anniversary party… especially when I get the microphone privileges. Usually I have a speech I think I will follow, but this year I decided to tell it from that moment, from my insides. I wanted everyone there to understand the important work Maddie’s Mark does, and feel a bit of the emotion in this gift of creating Best Day Evers. I talked too long, but I am not known for short and sweet. I was reminded that it is always the little things that blow me away, the moments not even planned that stand as the most powerful. I am ALWAYS in awe of the connections, the threads, God has stitched for us to live…

This past year I was honored to be a part of MANY Best Day Evers- parties, concerts, yards, dinners, Christmas Lights and getaways. The most powerful moment that I carry and will hold forever was not a child, but instead a moment I got to do a small thing for a grown up…

A few years ago, I was connected to a family, The Andi Family, to set up a prom experience for Ryan a patient at the Melody’s Center. I knew I couldn’t deliver the perfect date, I don’t know what teenagers do for fun… so I asked Dante, a Best Day Ever Teen, to help plan this. Ryan and his lovely Jenna enjoyed little gifts and momentos through the week before ‘prom’. They were picked up by a limo, enjoyed a nicer dinner than I ever have at Prime in Saratoga and then enjoyed the sunset at Saratoga Beach. Dante and his family set up the most perfect and romantic setup for Ryan and Jenna… complete with sparkling grape juice. It was marvelous. I never met Ryan, though his energy changed me. Ryan’s smile reminded me so much of Markel’s, you know the kind, the smile that goes from just under one eye to just under the other. Ryan passed away after receiving his Stem Cell Transplant. I remember those moments knowing that his momma was forever to be in this stupid club, and I had hoped like hell that could never happen. This story still hurts my heart… but I know where he is. This year a week before Thanksgiving I was contacted by the Child Life Specialist I used to work with when Ryan was alive. She knew that Maddie’s Mark Foundation always setup and served Thanksgiving Dinner at Albany Med and she asked me to set up a dinner for Ryan’s family. She let me know that soon after Ryan passed away his dad was diagnosed with a debilitating disease. I knew no more than that, but I knew it was important to set up this dinner and gift a semblance of order for Ryan’s mom and dad and sister. I like to think Ryan set this all up, like he told Madeline, “Hey you, dimples, can your momma make this Thanksgiving as normal as it can be for my mom and dad and sister?” and I think Madeline responded “Hell yeah”… only she doesn’t swear, she was so gentle. So up to that floor with a folding table, nice disposable tableware and sparkling cider we went. I tried hard to just be quick and set up, to let them enjoy… I even had a memorial plate and battery candle to honor Ryan. We left them to eat and laugh and snuggle as much as they could, and even with all the hard and heavy they were there and laughing and eating and thanking… I felt that it was the most ‘normal’ Thanksgiving they could have had enjoyed with all the other circumstances. Ryan’s dad, who I learned later was a beloved coach, father, husband and community member passed away from that disease. Ryan’s momma and sister have to live and miss their 2 men…

I will forever remember the importance of connection, and the reminder that our Best Day Ever families are now part of our family. I love the gift of watching Abby dance and twirl, Emily perform, Ayven lose teeth and play sports, Dante get strong and build a life, Elliot tell me about her cousins, Bree become a nurse, Cooper go to camp, Ava finish 3rd grade, Jax walk independently, Ben be silly and grow up, Faith in Girl Scouts, Kacey become an adult, Logan tackle toddlerhood, Dylan take on sports, Charlie (Charlotte) beat all the odds and Lexi travel and grow. I wouldn’t have this ‘family’ if not for Madeline and for those who support this mission of Best Day Evers, what would it be like? I never want to know…

7 years… gold and sparkles aside… Thank you. Thank you. Thank you. I thank you for the support, I ask you to continue to see life through the Best Day Ever colored glasses, I promise it is better that way. Imagine if you honored all of your best moments ever… what would life look like? Thank you for the kindness and generosity that has allowed me, my girls and my team to create these moments, thank you for the connections and the gifts. I am forever grateful and forever built better because of these gifts…

Enjoy these moments… feel free to add!