Choosing Little Deal

I am a firm believer in recognizing things in life as big deal or little deal. In my most professional place, the place that pays my bills, I have a conversation most mornings with the people I work with. I say to them as we walk down the hall and get to the places we need to be “Don’t forget, Big Deal/Little Deal. What is a Big Deal?” They tell me “Blood, boo-boos and broken bones”… and I ask “What is a little deal?” They tell me “Everything else.” Once we have established that we know what a big deal or little deal is we then talk about our day and making a choice to remember big deal/little deal. “If your writing isn’t perfect big deal/little deal?… if your friend pushes you big deal/little deal?” and so on and so forth. I also remind myself that it takes time for anyone to soak in that something that FEELS like a big deal in a moment, to them, might really be a little deal in the grand scheme of life. This is the story of a day as a Social Emotional support staff at an elementary school.

It is also that same way I parent my children, support my friendships and communicate in my family. Big deal/little deal… the easiest and hardest lesson to learn. I fail, we all do… but I try again and retell myself in my best big girl voice- Erin Big Deal/Little Deal???? What is a big deal??? Blood, boo boos and broken bones (which covers many areas under those simple words) and what is a little deal? Everything else… and generally speaking my life is chock full of little deal, take a deep breath and move on. I try not to store it up, but sometimes it happens. I have had a few times this spring that I have just had an uber tantrum, in my words, but in the wise words of my friend- I did some emotional draining. I love when those wise people give you the right words to understand your moment. In that moment she reminded me of a few things- that the thing that put me into this tantrum was NOT A BIG DEAL, that I need to let my emotions drain and I am stronger than letting that thing be a big deal. After a couple good tantrums in May, I felt like my emotions were drained off and my brain was back to place of recognizing big deal/little deal…

This past weekend tested my skills to the edge, but I am proud to say I did it. I made it to Wednesday still feeling ok and calm with my little deal reactions. Saturday morning was a really good morning, easy and slow… like summer Saturdays should be. Lucy and I went to drop our laundry at the Laundromat (another little deal issue of the year), then go take care of my friend Dana’s chickens. I parked and put in the codes, we loaded up the waters, spread out the dried mealworms and collected the eggs. It was time to start my Jeep… and she would not turn over. It was 90* plus and I had to get to a memorial in a couple hours… I sat and took a few deep breathes and tried not to cry. I called AAA and they sent out a big truck. Lucy and I went back inside the house, I took a shower and she played for a bit. We had to run to the end of my friend’s road/driveway to help the tow truck guy find her house. He was so nice, helped Lucy and I into his high truck and had cold water for us. We got back to the Jeep, as he checked out the Jeep I said something about how he shows up when no one is in a good place, that must stink. He replied, sometimes I get to make it a better day for them, give them good news- and for you it is just your battery. I reminded myself that he is the saver on those hard days. I was sloping downhill and he brought my perspective back up. While my battery charged and Lucy ate Dana’s kids popsicles (because the best friends don’t mind if you raid their home, shower and eat their food when you are in need)… he asked how my AC works, I told him it doesn’t. It has been charged a few times, but we are wide open window people, except Lucy’s window she killed the motor years ago. He began looking at the fuses and reading my manual and pointed me in a direction to a quick fix for my AC- none of which was his job, just his kindness. When she was all charged Lucy and I thanked him, and drove (Halleluiah) to the laundromat, grabbed our gear and got home. Amelia had prepped all we needed for the memorial and we were only a few moments late. The girls and I were welcomed right in and met with a mom who lost her daughter suddenly too. We did what we do, we set up a rock painting station and painted away. I looked like a paint covered crazy lady by the end of the night, but it was just right. We went home and felt good… it was a good day even with the crappy middle.

Kind AAA Guy

Lucy was complaining about the middle of our Saturday, and the time she had to waste. I understood; I didn’t mean to have a whole afternoon with those circumstances… but life never goes as planned. I reminded her that the afternoon could have gone worse, my Jeep could have done that at the Laundromat, or somewhere else. We could have been stuck in a hot, hot place and not had an airconditioned house with a shower and snacks. He could have needed to tow her somewhere; it might have been a big deal. She nodded and I thanked her for being my partner… I promised her a big ice-cream cone soon. She smiled…

I woke up on Sunday, headed to the gym, and my Jeep had let me down again. I wanted to cry, but I texted my friend, she picked me up in her reliable Jeep and we worked out. We got some of our brain cleaning and laughing out, thankfully those around us had headphones in. She dropped me home and I called AAA again, and a nice man came over and replaced my battery. It hurt to give him my debit card and pay for the battery, but it felt good knowing that my Jeep is safe and running. Actually, she is running really well… big deal averted.

While I was at the gym with my friend, she noted that I stayed calm even though it is a tremendous amount of pressure to add to my life right now. I nodded… and told her right now I am choosing to see this as a little deal. If I were to act out on this right now, it would be a pile of emotion not equal to this problem and not necessary… instead we are going to work out my body, brain and emotions. When we left I felt lighter, starting to know it is a little deal, not having to choose to see it that way anymore. I am sitting here on a Wednesday morning and every part of me knows that it is a little deal in the grand scheme of life… it was a not fun moment but not blood, boo boo or broken bone.

I think a lot of people could start their day as they get out of bed and get ready for life by saying “Big Deal/Little Deal… what is a BIG Deal???? And what is a little deal???” The answers to ‘what is a Big deal?’ for you may be different, but remember everything else is a little deal. It really is, even if you have to choose that, choose to let it go, choose to not engage, choose to not react, choose. It is hard, but important. Practice this… it is a practice to succeed. Every morning as we walked down the hall to our classrooms, I remind my friends, we talk about strategies when it is hard to see it as a little deal, we prepare for the moments that will be hard. In those days and months of walking down the hallways and talking about this there is change, those special kiddos start to practice this and know it… and they don’t need me so much to remind them.

Big Deal/Little Deal?… that is the question.

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…

 

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.

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!

END – TIME = 37

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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A Miracle Kind of Day…

Hot Pink Heels and Beautiful Balds…

Today is about miracles, many miracles.

This morning I got up and rushed out the door to attend a service at an unfamiliar church, to hear about a miracle. If you are on social media or live in the Capital Region you have most likely heard of Woodward Strong. Josh Woodward was diagnosed with Septic Shock, and after surviving several impossible obstacles, he is home and rebuilding life. His wife, Chelsea, has bravely, openly and faithfully documented this whole journey. It was an amazing journey to watch, as a total stranger to watch the world lift up this family, to watch those with little or no faith pray… to watch it work. Chelsea not only requested prayers, but she documented and allowed us to share in her family’s miracle. The ripples of this miracles will resonate for years to come, I fully believe God has an incredible plan for the Woodward family.

While sitting in a church, a very different church for this Catholic girl, I felt welcome and surrounded. I listened for the message God wanted me to take away. The pastor defined a miracle in a way that clearly and easily describes what a miracle is- when God makes the impossible, possible. He then touched on whether it a miracle is a miracle if no one sees it… I guess I never thought about that part. God gifts millions of miracles, many are probably quiet little miracles… but miracles are meant to be shared. It is the job of the miracle to point us in a direction, to remind us that He is there and working in our lives. The Woodward Miracle did that, it reminded many that God is working and standing with them- even in the hot mess of this world, especially in the hot mess. Chelsea and her Pastor spoke about how many people saw and some learned the power of prayer, many marriages and relationships were mended and faith was renewed for so many people across the country, who knows even around the world. That is the job of this miracle…

I especially loved when Josh spoke about the peace he had when his life was on the edge of ending, he was at peace with God and knew that the choice wasn’t his… he would wake to his wife or his Lord. He has bee gifted time here to work and change and build, to use his story to connect the word, to carry those in pain… a new journey God has planned for him.

Much of the chat with Chelsea was important to hear for me… I just sat and watched her stay strong and candid and graceful as she spoke of this raw and painful journey. She had the loveliest outfit on, grounded in hot pink pumps with her legs crossed as she recounted the hard days and the ways God worked around her and through others. She talked about answered prayers, and how the answer doesn’t look the way we might imagine it, when she prayed for healing, she knew that the healing could be Josh or her very own broken heart, both were an answer to her prayer. I feel that… so much of that. My miracle looked so different, at the same time it looks so similar. Madeline was Madeline up until her last moments, and God has helped me heal and build and tell this story. Madeline, just like Josh, got the world to rally and work together, for a moment in history 1,000’s of people were praying for healing and comfort… her miracle renewed the faith of so many, including me. Madeline’s story and death reconnected so many that were broken. A publicly shared miracle… both reminding the world that the greatest prayer we will ever pray is thank you…

It was the best way to start a day of miracles… and I think I need a pair of hot pink heels STAT!

On to the next round of miracles… I hopped into my dirty Jeep and grabbed a big tall iced coffee before getting to the St. Baldrick’s event at the Westmere Fire Department, which I was actually early for (another miracle).

Let me tell you about this event… imagine 30 or more firetrucks in a parade dropping children in our area who are fighting right now or have fought any type of Childhood Cancer. They get dropped off with their families and head up a red carpet, it is the grandest honor to watch this whole experience. There are bagpipes and sirens and of course capes… I feel every emotion when I watch that parade. The nurses who work with the kids are high fiving them as they run up to meet their friends from clinic, you see this is a celebration but also a little reunion. The kids run with the friends they spent so much time with in clinic, moms catch up on life… you see these are the people they were with while the world kept turning for everyone else. I stand on the edges and watch those miracles laugh and run with their capes- posing for pictures and owning the show because they know that every.single.person in that huge space is there for them. Cooper’s dad said it just right… that room was full of people with ‘No skin in the game’… people who are there to support even though their children are healthy, they are not nurses or doctors… they just joined the game with no terrible awful diagnosis busting into their lives. That is the amazing part of this. This year was missing some important miracles, but just like Madeline their time here was short. I stood on the sidelines and thought about the ones who aren’t here anymore. I thought about standing on the sidelines last year and watching our Markel and that smile, that vibrant smile. I missed that smile today… but I trust that her miracle pointed so many in a direction, to a renewed faith and a memory that will forever make me cry and smile at the same moment.

These events fill me up to the brim with energy to go out and do my work, share my girl. It is hard to know that she doesn’t get to ride in a firetruck, she doesn’t get to over indulge with her clinic pals or sing along to the song Brave. It is hard… but my miracle pointed me in a direction, and this is the direction.

I miss her terribly today, but I say “thank you” for her, for the moments that she was here, for the gift of being her mom. I remind myself that I got her, I got to be her biggest builder, her biggest fan. She was spectacular… soft and kind, compassionate and trusting. Madeline was a friend to all, she was a connector. Her miracle is still doing her work, connecting and building. I say ‘Thank you’… Thank you Big Guy for her gift, take care of her up there, I trust in You.

Ode to Irish Ones…

Top o’ the afternoon to ya. Happy Saint Patrick’s Day to all…

I love March, it is a month of more light, memories, Saint Patrick’s Day celebrations and my birthday… which I historically celebrated for the month, March 30 deserves some extra celebrating. I love that we start to enjoy sprinkles of spring, bits of sunshine and a warmth you can only feel if you spent the last few months in the cold of a New York winter. The feeling of standing in sunshine on a 45* day with your boots on and your children basking in that warmth… is so different than standing in the sunshine at the beach on July 4th, so different than visiting the sunshine in Florida in February… it is different. We have waited for this… we have worked for this. We are going to embrace every.single.ounce.of.sun and light that the world gifts us. We just survived a Northern New York winter… we earned that warmth. Friday was like that for us.

Today is Saint Patrick’s Day, and thankfully we got to celebrate for a whole weekend. I left work Friday with so much excitement and anticipation… planning out the moments for the weekend and prepping clothes for the festivities. I felt like a little kid… excited for all that we do on these days. That’s the thing, we don’t really have a thing anymore. My roots and memories are based in Watertown, in the times I had growing up. I had some college Saint Patrick’s Day memories but honestly, I would have taken the simplicity of those days when I was young over the crazy drunken days. I loved those days… days with a church potluck and running around with cousins. Leaving just enough mess at the Parish Center for Sister Norah to notice, but not punish. We would religiously stand at the Saint Patrick’s Day Parade, bundled as much as necessary… cold did not prevent the celebrations. After the parade we would walk over to the State Office Building, get our stamps and head in for salt potatoes floating in a pool of melted butter, just like Molly loved. I loved watching the Irish Dancers in the Auditorium. I loved going to the corner where Uncle Sean would always be waiting, watching the State Troopers who had just marched with their families. The bands and the old ladies who would dance… it is an atmosphere that I believe only the Irish can create.

Today looks different than so many of my remembered moments. This weekend as a whole looked so different. I guess I imagined bringing my girls up with all I was blessed to experience, but we all know that didn’t work out as planned. I mean there were some red flags of my fantasy all along, the girl’s father was not a fan of Irish people, of the culture and traditions, he much preferred to lean on his Italian roots. I, myself, loved the idea of Irish Italian girls… products of potatoes and pasta… big crazy families and strong grounded faith in the Catholic Church. He liked to dress them in green shirts that proclaimed that we were just Americans “Kiss me, I’m American”. It poked me a little every.single.time they wore those, but I smiled and allowed it… I rolled over and felt like it wasn’t a good thing to be an ‘Erin’ on a day that honors those roots. I am not that ‘Erin’ anymore…

This weekend I worked hard to create some bits for my girls of the magic of my traditions. I talk about my family all of the time with the girls, I have to remind them of which uncle is the funny one with red hair (that one needs clarification), what Hayle used to call Aunt Bridget, which Aunt takes all of the pictures. They are used to visiting my grandma and grandpa… and our Aunt Jane. I searched for something with some good Irish music and food… I wanted to enjoy this weekend. We went to a Concert at Proctors with The Screamin’ Orphans. It was awesome. There was a bagpiper, Irish Dancers and a Girl Rock Band with the.best.accent.you.can.imagine. We had so much fun… my feet hurt and my brain remembered songs I heard growing up. We came home and watched Boondock Saints… because we all need to watch a couple hot Irish men get rid of the bad guys every once and a while.

This morning we woke up and got ready for Lucy’s Basketball Banquet. We had plans to go to this Ancient Order of Hibernian’s for the Irish Festival, I woke with an idea though. I offered the choice to Lucy- to go celebrate our Irish roots or make the sauce that her Grammie makes. I had this thought that maybe, because we get to choose what our tradition looks like, we could mesh our traditions, mine alongside their dad’s family traditions. They have been asking to make sauce for a long time. Lucy said “Mom, that is a hard decision”… “Sauce and Mumford & Sons”. Of course I decided in that moment that I love her more than anything in the world… or maybe equally to her siblings (we can’t have a favorite right???).

So today, in total difference than any other Saint Patrick’s Day is a Saucey Sunday… with green shirts and hands that have never squeezed wet bread or made meatballs. It is a mix of their roots, I guess my old roots. It looks different but it still felt good… funny how that can happen. We filled that big pot and made those meatballs, seared those sausages… and we laughed with our aprons on. I put on one of my favorite movies after, P.S. I love you. I felt like throwing in some Irish to the day… and weirdly I think it is the most romantic movie ever. Imagine being so planned that you planned to deliver some love after you die. I cry in so many spots of that movie, which confuses my girls, because those moments seem happy. I just wish more than anything in the world that I got that, that I got 10 letters from Madeline, reminding me how much she loves me and that she misses me. What would that be like???

I look at these years and I know that she delivered her ’10 letters’… she warned me way back when of the hurt I was allowing in my marriage, she knew… and she wanted me to move on. She built this foundation, she put the words ‘Best Day Ever’ in my vernacular. She travels on my shoulder and gets pissed when I swear too much or speed… sometimes I do it just to piss her off, it reminds me she is right here with me, mad but here.

It was a good weekend. It looked different, but is different bad? Different is hard, but it is necessary. I wish, I wish… for her. I get to go green with my girls and show them the world as I love it, as I know it. That is my forever. I love my lucky lil lady… I wish she were here to enjoy some sauce and meatballs, after a jolly good day of Gaelic and Irish rock…

Enjoy your lucky charms… whatever they may be. Share your roots… even if you just found out you are Irish from Ancestry.com. If you are Irish go out and be Irish… build community, feed your family and friends… boil what you have and pass that stone soup around… dance even when the world is heavy and awful… if the music moves you dance. When your people die… honor them, smile when you talk about them, stick together and bring them along in your life… that is being Irish, we are way more than a leprechaun, we are a way to be.