Welcome Messy Little Rainbow Boy

Welcome to the world little one. In this big crazy world full of chaos and loud noise, welcome. I know where you have been is full of noise, but it is the noise of beeps and nurses bustling around, the sound mom’s crying as they watch their tiny baby’s breathe, the sound of dad’s telling their bitty baby’s to ‘get growing, there are big brothers waiting for you’. The sounds of a NICU…

Welcome to the world Little Benson Wilson Kirkby, the tiniest of the Wilson babies. Your cousin Lucy was reluctant to hand over the title of tiniest, but when she saw that first picture she softened and gave in. You joined our family August 10, 2019 and you have been breaking all the rules since… you will fit in just right with your brothers when you join the clan- in a bit of time.

We waited for you… in all the storms we knew a rainbow was coming. You are our little rainbow, though I quite think you are a little bit of a messy rainbow or maybe you are a Madeline Rainbow, the flip-flopped kind she used to draw. That’s it Benson! You are Madeline’s Rainbow, you have all your colors you just don’t follow the plan. We were down here hoping for our rainbow, expecting and anticipating, sometimes fearing the plan would change… that there would be a storm to get through. Here you are though… our Madeline Rainbow.

rainbow

Well buddy, while you have been over in Syracuse getting bigger and stronger, hearing those sounds of the NICU… we have been showing you off, checking in on your momma and daddy, laughing at your brothers’ crazy antics, praying and trying to stay patient. Self-talk buddy, lots of self-talk, over here… busy patiently-ish waiting to hold you. You don’t know this yet, maybe you do, maybe Mads gave you the run down already… so you would be ready for the chaos and noise to come. We are NOT a quiet bunch… so start preparing your reflexes for the ones who have waited for you. I’ll give you a rundown…

So… while you are busy getting bigger and getting some extra attention here’s what you need to know… the brothers are awesome little dinosaurs – watch your toes, they might bite. The grandparents are pretty cool- they are way too soft for my taste. Uncle Travis is big and quiet, but he is a baby hog… and he has a cool van load of people who come along too. Jo-Jo is the best with kids, pancakes and cookies, gifts and super hugs are staples for her – if she bugs you just give a quick bite, she’ll leave you alone. She has the coolest mini adults that can’t wait to meet you. Aunt Molly is quiet, she likes order and hates when you cry in a restaurant, if you want to impress her behave really well in public, she is special and thoughtful and loves to help. Then there is me, Aunt Erin, I don’t know how to prep you for me, but Madeline was mine and I am sure you were already hers- down here though- in the chaos and noise is a set of chicks who love babies and can’t wait to see if you have ANY eye lashes and touch those toes. They are used to hospitals and visiting friends there, so they know the sounds too. Their favorite rainbows are the messy Madeline kind…

The rest of your family I will leave for your momma to share, it gets louder and crazier the further out we go. When you grow up and you are taller than me- don’t say I didn’t warn you, also don’t tell me you are taller than me. Odds are years of not enough calcium and too much wine will warrant me shorter and stocker than you, neither of which matter, I am still the boss-ish.

Soooo… while you have been hangin’ in the NICU and growing and listening to the beeps and nurses and crying- lots of doctors have looked at you and your insides. They have decided that in order to grow big and tall and of course smart and strong and maybe rich you need to have a little bit’a work done on your heart to make it work smarter. You see buddy, sometimes, our heart is doing too much work and not making the rest of the body do the work too… and your little heart is taking on more than its fair share of work. These Doctors are gonna work it out so that your heart is doing work more efficiently, so that the rest of your body gets to working its fair share. This next adventure is important buddy, remember your rainbow angel. Rest and heal and grow, that’s your only job buddy. We will keep being out here in the loud chaos of the world waiting patiently-ish for you to join us. You will join the ranks of your clan, as littlest dinosaur, and all will be back to normal chaos. For now… we all send prayers up to The Big Guy and our Messy Rainbow Maker…

Welcome to the world Benson, you little rule breaker. You already fit right in to this big crazy messy world… welcome to The Boy who does not follow the rules, our messy little rainbow boy.

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Mark’s Mark…

This week the world lost a very special 2nd grader at Bradt School. His smile was the gateway to his kind and compassionate soul, a really thoughtful little boy. His teachers loved him and he was a role model for character and workmanship in class. Reading about his love of baseball and his sportsmanship, testimonials of his smile and way of always being positive feel, to me, so much like Madeline.

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Mark’s 2nd grade Teacher, Mrs. Maguire, is a wonderful teacher who values experiences and adventures that go along with learning- more specifically service in the community. She and her students chose a charity each month to work to support either raising money, awareness, participating in walks, making lunches for Habitat for Humanity and helping Maddie’s Mark with Thanksgiving bags for families at Albany Med. It is amazing the amount of time and energy they put in, all the while learning important lessons about life and the need for service. Just a couple weeks ago Mark’s whole class worked in the hot sun to paint and freshen up a garden at our school to honor Deb Roman, an amazing ENL teacher who died in a tragic situation. I watched as his class spent the day outside painting and working to restore beauty to that memorial. Every Thursday you could find Mrs. Maguire’s kids in the hall outside the nurse’s office, waiting to be handed the heavy bags for our backpack food program. They would then head out to deliver the food between all of the regular work they had that day. You could count on seeing Mark happily delivering, painting, writing, creating, making lunches… whatever was asked, he was a happy one.

I have many memories of Mark, with that smile, most of them just seeing him walk down the hall or doing writing work in his class. In November when I was asked to talk about Maddie’s Mark and the service we do, I got to see Mark’s penmanship skills. Mark labeled and prepped all of the cards and gift cards to be delivered to families, and his penmanship skills topped many of the adults I know. I will forever see Mark smiling down the halls of Bradt, just as see Deb Roman with her soft smile and Madeline walking in front of me to the Lime room. His spirit will never leave Bradt school…

On June 25, 2019 I prepared my walls, I checked myself, I wrote my piece and I got myself an iced coffee and prepped to do what I had to do to get to bed time and honor Madeline. The morning was a different one than normal, moving furniture and noticing extra guidance and administration coming… but my brain didn’t put all of those things together. Just before send off the rain started… and it was RAINING. Teachers were noticing the presence of extra people and a few people had tears… I could tell something was coming. I stood in the hall and tried to figure out what the best thing for me to do, jet out and find out later or stay and hear. I decided to stay, but first send off the kids. We all went outside, but it was pouring… I decided to just get wet and laugh and squirt the buses as they go and wave out of excitement and missing. When all of the teachers got back into the halls we were called to the library, when we were all there our Principal shared the news that a little while ago Mark Lombardi’s dad called and let her know that our little 2nd grader, Mark, had died. What a surreal feeling to be in a moment that others had to stand and hear that your daughter died. I decided quickly to go home and celebrate Madeline, she had Mark now.

The morning of June 25th I wrote about Madeline’s birthday and a bit of a soft rant about spending your time wisely. Around lunchtime on June 25th was reminded of the importance of this. On June 26th an amazing recently retired Speech Teacher spoke at the send off breakfast, she had many funny points and profound points, but through her tears she talked about getting older and how our parents and families get older, and how you need to choose the important stuff… time and health are not ours forever…

Three messages in 24 hours, take that for what it is. Time and health are gifts, not promised to us. Don’t put off life, don’t waste your time being busy. I see it, all the time. I have lived in a world that surrounded us when it was hard, allowed their faith to be strengthened, took time for their family… and I see those same people fill their time far away from that now. I feel it all the time. Work harder… on Monday afternoon Mark was swimming and smiling. On Monday morning Mark was enjoying a half day with his 2nd grade friends. Today is Thursday…

Talk about Mark. Share stories, share laughs. Make his favorite foods and think of him. Remind your son or daughter to play baseball like Mark- happy to be in the game. Take time to write neatly, think of Mark and all of the Albany Med families who received those cards. Smile all.the.freakin.time. Be a role model in a room full of jerks, be the one that others can look at and want to be more like. Love your family all the parts of it. Love your sister, or brother… I promise when they are gone you don’t want to wish you did it better. Enjoy simple Best Day Evers, simple. Spend your time wisely… it is a gift not a promise.

Mark. You have made a Mark in my soul, and I will do anything I can to help leave your Mark. I will stick around and tell your story. I will see you in the hallways and I will smile while I remember your smile. I will forever honor your spirit and soft gentle soul…

 

 

I am including Mark’s GoFundMe page and obituary. His family could use fund and prayers, and knowledge that Mark’s short life will serve as a model for you to live yours…

Mark Lombardi Obituary

Mark Lombardi GoFundMe

Thirteen.

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Thirteen. A magical age when one enters the first level of adulthood, in the minds of anyone under the age of thirteen. I remember looking forward to turning 13, like things would really change. In my mind, like the snap of fingers it would all make sense and these next few years would be simple. I was on the brink of something big, something really profound. I was 13 and in love with Garth Brooks, oversized tee shirts and FHA… and let me tell you nothing got easier, especially fitting in. Life is like that… imagine one thing and learn that nothing we imagine happens how we imagine it.

Fast forward through many awkward years, college, Matthew, marriage and Albany… to June 25, 2006. We welcomed the most perfect 9-pound 6-ounce baby girl- Madeline Elizabeth Musto to this crazy brutiful world. We welcomed her with a blissful ignorance of time, the notion that she would be here until long after we left. That is the way we welcome fresh humans, with the blind love and knowledge that we will spend the rest of our lives loving and living in a world with them. What is the alternative, though? The alternative is so very sad, so not blissful and unaware. I quite miss that blissful ignorance, that gift that comes with fresh humans, that and the smell of a fresh baby’s head as you rest them on your chest and sway and bop…

I should be kissing my 13-year old’s forehead as I head out to work, maybe she would come with me and help in her old teacher’s classroom. I should be arranging a party or experience for teens, something that involved a bit of independence and a pile of trust… maybe even a treat of Starbucks and pedicures. I imagine she would be tall and have the best smile, accented with her big dimple. I imagine her teeth would fill her grin and that would be backed up with that infectious giggle- a little deep and rumbly, with a squeak here and there. I should be guiding her to new adventures, through friendship issues and difficult choices. I should be planning a trip to the lake, and setting up to remake the sunset picture with the 3 girls…

The alternative is so very sad. I should be… but the alternative is so very sad. The alternative is messaging many friends and family a birthday plan for June 25, 2019. The alternative is deciding to do it a little different this year, this year of disorder, to go to the beach and then gather a pile of important people in my back yard and celebrate the sacred space around my table- with pizza and cake. I thought about a party at her spot, but decided to do what Madeline loved… sunshine, sand, friends, pizza, backyard fun and best nights ever- the simple kind. What I wouldn’t give to throw a 13-year old’s birthday… to buy silly expensive Starbucks, fancy pedicures and maybe Hibachi with friends… what I wouldn’t give to have the alternative.

I miss her.

I wish I got to hug her today, to brush her hair off her face and tell her not to be a butthead. I wish I got to turn on Pandora and get her to dance with me in our little kitchen. I wish I got enjoy my 13-year-old on her birthday, celebrating the blissful and unaware state I got to live in way back when…

Today- go out there and do something kind. Every little kind thing counts. Assess your time, your family. Life is crazy, don’t waste it being busy. Say no to something today, with no guilt or fear, just say no and enjoy your time. This is a tough one… imagine what you want your child to be when they grow up… and know that some don’t get to grow up. Everyone loves sports and commitments, but are those sports and commitments building your family or stealing joy from your family. Do not put off time with your family, and be more aware of how you spend it. That is what I ask of you all today. Do a kind thing and remind yourself to raise your perfectly exceptionally mediocre kids and teens to be really good human beings that is all that matters… Madeline was the most special, simple and compassionate human being, bring her along today.

 

Happy Birthday lovely… enjoy the cake up there in heaven.  Miss you like crazy, but I know you are right here riding along with us Musto Chicks reminding me of the speed limit, telling Meme to be quiet and snuggling Lucy…

Gather.

bread-and-wine-quoteI have talked about this before, the sacredness of gathering. I know it, I believe it, I see the amazing things that come from gathering. I feel connected and refreshed when I gather with others. I love the energy I feel for days after the gathering. I love when my cheeks hurt because we laugh so hard. I love when we cry together, it is therapy for my whole self. I love waking up in the morning and going back over all the many conversations…

I know this, yet I rarely gather up my people and enter that sacred space.

I have been reading more lately- a new book and parts of my personal bibles. Glennon’s Carry on Warrior, Anne Lamott Travelling Mercies, Jen Hatmaker’s For the Love… the oldies that got me to a healthier whole self. The messages in those women’s words reassure me that with faith, humor, honesty and good friends we can get through this life and even when it sucks life is good. In all of this reading I am doing I started reading Shauna Niequist Bread and Wine… which I thought was the perfect title to really bring in readers… well not all readers healthy eating readers most likely skip right past this one. When you want to appeal to a reader that loves food and faith and friendship and family and joining all of those things together- one must name a book Bread and Wine. As expected, I am hooked. I read it the same as I read the others- one chapter in a sitting, if I read more it is a chapter from another book. I like to let the letters simmer in my brain, let the words work their way through me. I love how she writes; it is like I am sitting with her and she is telling me the stories and making the recipes. The book is a compilation of stories around ‘the table’, stories of gathering in the heaviest seasons and the easiest. Stories of food and gathering, healing and connecting, each story around a recipe that is included at the end of the chapter. I am not only feeling brave and wanting to make a chicken curry and maybe even include the mangoes- I am reminded of the deep need for me to connect and gather. I am reminded that it is as important to my healthy self as working out and brushing my teeth. I need to set a goal, just as I do for working out and stretching, to honor the sacred, sometimes messy and prepared space that is my table.

I am in a lonely season in my life. I am working hard to stay in the quiet and let myself sort in those moments. I am working hard to set boundaries and take time for me, even remove some important things from my plate. I am trying to find a balance in the quiet and loud, and find fillers for my sacred space. This is a hard season… one I am not used to. I am ready for some interruptions in this quiet place.

Last night I made a really great dinner and my table was full. Amelia’s friend got off the bus and Lucy’s friend came to swim and play. The girls asked if their friends could stay for dinner, I told them yes as long as they eat fish. I had told myself earlier I wasn’t going to make mac and cheese tonight, it was going to be a full cooked meal. Both friends stayed and looked forward to the dinner of fish and whatever else I made. Lucy’s little friend told us he had never eaten fish but would try it, which is exactly the right thing to do. I got right to work lightly breading haddock in breadcrumbs with fresh basil leaves in the mixture, sautéing little shrimps in butter, boiling egg noodles and sautéing really great green beans in olive oil, garlic and fresh basil. Amelia’s door wasn’t closed and shut off as she hung out with her friend, Lucy kept running through the kitchen with her friend telling me how good it smelled. Finally, it was dinner… around my table. We pulled up another chair, moved the computer and said grace, a full table…. Just what I have been craving. It didn’t look like I imagined, with my friends and family, wine and funny stories… but it was a full table. It was an answer, one of those answers that looks different that we requested but just as fulfilling. I am grateful for that full table, and some very full bellies. I went to the stove and counter to pack up left overs for lunch… and every morsel was gone… all that was left was my veggies. I guess no fish for lunch, just beans and yogurt (my coworkers will be pleased with the missing meat in the microwave).

Gather. Around my table. Around your table. Gather with kids or fun adults. Gather and laugh so hard it hurts or cry out some of the pain. Gather and tell the stories that connect… that remind us that ‘the table’ is a sacred space for love and pain, faith and fear, laughs and cries, gratitude and brokenness, quiet and loud, wine and water, gourmet or Kraft dinner… a safe and sacred space.

I hope you dance…

On Saturday we got to attend Amelia’s Dance Recital, a day she had been preparing for since September. I was excited all week, reading and rereading the list and times for the event, making sure my brain wouldn’t mix up times or forget to have her pack extra bobby pins. It was really exciting because my parents got to come watch her dance, a treat since they live hours away. It was a good day… we got some pictures in front of our tree, loaded into the Jeep and headed off to Voorheesville.

In January I remember sitting and watching Amelia dance through the window into her studio, and hearing the song over and over. She would start to get tighter while I watched so I tried not to make her nervous often. The song they chose for her lyrical class was a powerful song, one that has become a bit of an anthem for me these past years. The song not only evoked powerful emotion while I watched, it reminded me that He wants me to more than hear those words. He sent the most beautiful reminder… my dancer telling the story of these years, reminding me in the most beautiful way that He’s got this, He is right there and that maybe our hardest parts of life are mercies. Imagine your lovely, in a soft gold flowy gown, gracefully dancing across a stage to Laura Story “Blessings”…

“When friends betray us, when darkness seems to win, we know, the pain reminds this heart that this is not, this is not our home…” This is not our home. Reminding us that this place is temporary, this pain is temporary, the joy is temporary… to gracefully dance through it is a gift. I felt such joy watching her dance… what an honor to be her mom, to get to raise her and build her. She is one of my biggest blessings- and in all the rain and storms I am grateful, in all of the turmoil and hard moments parenting I am grateful… in moments watching her do what she loves and share her gift I am grateful, I am joyful. Joy is one I don’t feel so often, so when I do, I store it and love it and keep it and reflect on it and embrace it.

I really loved her dance program this year, The King’s Dancers, a Christian based dance program. I loved the music and costumes and the inclusive nature of the program. The recital opened up with “You Say” a beautiful and powerful song that has mainstreamed. They mixed 2 versions- the soft version with ballerinas, and the edgier version the hip hop dancers took the stage. It was an awesome way to start the show and set your brain to enjoy. There were dancers of many different abilities and needs who got to share their gifts with the audience. As I watched a lovely woman named Grace dance, I wondered if her parents knew God made her to dance when they named her. Grace has down syndrome and is a dancer, you could see it is in her soul to dance, and to share her gift. Watching her dance in a ballet piece and flow across the stage, hip hopping later to a fast song, and tapping with the biggest personality. I had the crying emotion that comes when you are smiling really big, I imagine it looks pretty funny to see that face… the one that is crying from the connection and emotion, and smiling because it is so beautiful and cute and happy. Emotions are funny like that…

I got to my seat and realized when I was watching the show, that in all of my planning all of my packing… I had water bottles, almonds and cheese sticks, extra lipstick… I forgot to bring tissues. I would sit through all of those practice classes and watch Amelia through the window and have a little tear, and Lucy would laugh at me and remind me that I cry soooo much. I should have been prepared for that, but instead I tried to discreetly wipe them and move along. I remember a time when I barely cried… I used to cry at weddings, at the moment when you just felt so happy and excited for the couple getting married… a little bit of tear would fall, but it was excited and happy tears, usually I was standing next to my now ex-husband. I don’t cry at weddings anymore… I am sure those emotions are all mixed up and messy- and I am usually thinking I hope they work really hard and know that that marriage gig is hard. Instead of crying I send little thoughts of hope that they just keep working.

I think crying is different for me now, it is a mix of emotions. I usually don’t just get super sad and cry, occasionally. I cry when I watch my girls do what they love and what God made them to do- and those tears are happy/sad tears. Those tears contain excitement and joy- laced with pain and missing. Every bit of growing they do is without her… my forever 5-year-old. God is good though… He sends little reminders and moments that remind me “What is your blessings come through raindrops, what is your healing comes through tears, what if a 1000 sleepless nights are what it takes to know your near… what is trials of this life are your mercies in disguise…”

 

Amelia- always dance. I am so proud of you and the person you are becoming. You are beautiful. You are kind. You are strong. Choose to dance gracefully on stage and in your life… it’s hard lovely but there is love in the hard. You are my love in the hard… you are my grace, my mercy… you are all I have never deserved. I hope you dance…

 

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!

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There was a time when Birthdays were all about the building of years, adding on to our lives. As children every moment can be magical, as an adult magic is harder to attain. Birthdays are a day to feel special and magical, to acknowledge the piling up of moments. One day a person is 26 and the very next day they are magically 27 years old, it is a compilation of time. We count up, and acquire more and more years.

I have always loved my birthday, joking that I get a whole month since my birthday is March 30. I love celebrations and acknowledging the pile up of years. I really enjoy blowing out birthday candles in front of all of my people, looking at the number of years I have gotten to live on this planet. Reminding myself and others to enjoy aging… it is only a number and a successful life gets to stack on another year every.single.year.

I have been reflecting on many things this year, apparently this is a year of deep thinking for me. I started noticing a pattern since I turned 30, not the normal pattern of hating birthdays and not wanting to be 40. I started noticing that birthdays feel different altogether. It’s like all the years before Madeline died, I was counting up and acknowledging the pile up of years… the 25 to 26 to 27. After Madeline died, I feel like it is more of a countdown… a countdown of years until I am with her. I don’t think of my birthday as a stopwatch, but instead a timer…

I just acknowledge that there is a timer set for me, just as there was for Madeline. I have so far gotten many, many more moments that she did. Her timer was set for around 2000 days and I just celebrated around 13,500 days. I don’t get to know when my timer stops… but I do know that there was a shift in how I see time when she died. Time is different in so many ways for me here in the world After her Death. It sounds so morbid, to be counting down to an end, but it really isn’t like that.

Losing your child shifts so much of everything you believe and know to be true. Looking back on the ‘Before She Died’ time of my life I did everything differently… I took my health and my children’s health for granted, I took my life as a mom and wife for granted, I took time for granted. Her death has changed me to my core, even my celebrations. I am in this place of always being torn- torn between wanting to be with Madeline and wanting to be right here parenting my girls on Earth. I know for me I am always torn… and someday my time here will be done and I will go home, but before that time I want to see the work I have done building my girls, I want to be a kickass grandma and show them all the awesome bits of our family and Madeline, I want to travel all.over.the.place. It’s strange how you can want so badly to be in 2 places at once…

Today is my first day as 37, I have just let go of the time I spent in the 36 of the countdown… the countdown has shrunk. I like to think of the time left as a math equation like END minus TIME equals 37… (END – TIME = 37). I pray that 37 on this grand countdown is a good one, and I have several more adventures this year than last. I hope 37 is a year of change, a year of peace and a year of me building my life in a direction I love and am excited about. I think it will be, I am don’t with this timer being filled with time that feels like I am waiting for the next part.

Welcome to AGE – TIME= 37 Erin… it is going to be a fun, boring, hard, easy, slow, fast, joyful, painful, silly trip around the sun. Remember always:

Age is a privilege, not given to all.

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