In my time…


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

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

Why now?

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

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

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

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The Mission is in the Stories…

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

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

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

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

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

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

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

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

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

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

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

Enjoy these moments… feel free to add!

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.

THAT was a February February…

I feel like every Monday afternoon, right about 2:35 almost to the minute, I am walking down the sage green halls at Bradt School repeating to my brain, as I huff down the hall- “Now THAT was a Monday Monday.” If a coworker walks by we often nod our heads and I might even say to them “What a Monday Monday…” and they get it. Mondays are often full of Monday moments…

What does that mean though- a Monday Monday? I think Monday’s take a lot of extra energy, a lot of mental preparation. I anticipate as I work out and get the girls ready for their days at school- that mine will be challenging. As a Teacher’s Aide we prepare for the day after a weekend or vacation, it is necessary. Mondays are often HARD days.

Today is February 28, 2019, it is the last day of February… Halleluiah. I find myself referring to February that way… it was a February February. I sometimes even say this when people ask how this month was, thankfully they know my answer won’t at all cover it all, I answer them “It was a February February”. I think I start February with the same anticipation and preparation that I do a Monday, only bigger. I have to put my brain and heart and mind in a place that they can navigate all of the emotions and grief work that needs to be done. This February was no different in that way… it was a February February.

I keep reflecting on the past 28 days, that felt like 48 long days…

Madeline has now been gone for 7 years. It has been an eternity and a moment… or 7 years. On her anniversary weekend Lucy’s Basketball League honored Madeline and supported Maddie’s Mark. I watched Madeline’s classmates and girls that would have been her peers play basketball. They were so tall, so grown. Those girls are in 7th grade… it was so hard to watch, but it is so beautiful to see them remember Madeline. Those moments don’t look hard on the surface, I don’t think they look hard to the people around me… but they are hard moments to live through.

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We welcomed a new family member to our home, Nikita Elizabeth Musto. She is lovely and well trained and gentle. I didn’t mean to add on to the family… but we welcomed her on Madeline’s Anniversary Weekend, kind of ironic to add a member when we are feeling the missing. I was loosely watching adoption sites, just like I was real estate sites… like someday I won’t live in this house. Anyway, a 2-year-old Nikita popped up, and I just kept going back to her adoption picture. My sister Molly happened to Facebook message me and I mentioned her, she told me to fill out the paperwork and see. So, I decided to be a little brave and a little stupid, and I sent the form with information for the owner to analyze. She got back to me a week later, and we set up a meeting time. We picked her up the next weekend. I think I had PTSD from the last years of Sparky Elizabeth Musto’s life, with all the blind, deaf, pees and poops and escaping. I was cautious to fall in love, to give freedom… but Nikita Elizabeth Musto was the perfect addition on that February weekend laced with missing.

The February break was hard, it was focused on Matthew travelling to Texas with the girls to be with his girlfriend’s family. I think I mentally prepared to nest the whole time they were gone, like I differed the nesting I normally do pre-February. I had to stay busy and be productive, so I wasn’t focused on all of the time I was missing. Thankfully Rick was on board to work with me on a big kitchen project. We redid my countertops and tiles the backsplash… and now every.single.time I was dishes I feel like I am washing dishes in a nicer house and it feels good.

The month was filled with bits of normal, crying and missing, some laughs and some big disappointments. I am not so great at regulating disappointment and anxiety, so waiting on an experience that didn’t get put into motion was a really challenging task for me. It is hard stuff trying to sort through life and emotions, trying to figure which are grief, which are short term and which might be a part of a grudge. It Is hard work trying to stay afloat in all of these emotions and experiences…

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In the midst of it all I was watching a local firefighter fight for his life, while his wife shared his story. This healthy, strong father of two developed a Sepsis infection and was given a 5% chance of survival. I saw her words, begging for prayers and hope, sometimes very specific prayers for kidney function or to heal his hand. He underwent many surgeries, without being aware, including one that his wife Chelsea shared the surgeons prayed over him, and the flesh-eating disease they were sure it was, was no longer when the surgeons opened his skin. He is a miracle, Josh Woodward is a miracle. I have thought over and over this month- God is letting us, literally, watch a miracle as it happens. He is letting us see prayer heal, letting us see prayer save. Through the window of social media we can watch daily as one of God’s miracles heals and prepares for the life God has planned for him. #WoodwardStrong has become an anthem here near Albany, NY reminding us to have hope, pray big and see a miracle for what it is- a miracle.

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This month I also got to attend and help support The Dance to be Healed, which is an amazing night of children who have travelled on the Childhood Cancer Journey. A few years ago, a Nurse married his cancer patient, to lift her spirits. The world fell in love with that video, and the event now raises funds and awareness, but honestly, it is a night for all of those kids to dance and enjoy life in a space surrounded by others who get it. The best part, they aren’t being ‘treated’ for cancer, at least not with chemo and poison… but instead they are being ‘treated’ with dancing and flowy dresses and fun foods and a night off from the cancer world- they just Dance to be Healed.

This miracle and that dance are such positive and beautiful events in these days… we need those bursts of light to hold faithfully on to this journey. The thing is… they are hard moments for me too. It is hard to be the mom of a child who died of cancer… it is hard to know that the miracle God planned for Madeline didn’t look like the miracle God has gifted Josh Woodward. It is all just hard… it is all just so hard.

In true February form this was a February February… right to the core. The mix of emotions, the new members of our family right next to the missing… disappointment laced with hope. I always know this our pain rides right next to our joy, there is no other way. These are the very last moments of February 2019… and I am welcoming March with open arms and an open heart. I am praying that March is softer, lighter and of course full of Birthday magic with it is time to turn 37, I think 37, whatever I am turning. So welcome March, let’s dump this February in history and Spring along… to lighter and brighter days.

 

Super Bowl and Gathering.

I can honestly say that I never really cared about the Super Bowl, maybe there was a time I was slightly into it, but never was it a big deal. On the other hand- I love gathering. I love anything that involves squishing people into a space to laugh and share and eat and drink and enjoying their time. The Super Bowl is a good excuse to gather together… eat, laugh, watch, enjoy time.

In old times, before and after my girls were born, we would either host or pack up and go to friends for nachos and chili. I remember one Super Bowl, I think I was pregnant with Lucy, we went to an unmarried friends’ apartment for the gameday festivities. He had a big fancy TV with this speaker bar thing in front of the TV- you know the electronics you get before you have kids. Imagine two toddlers, lots of electronics, a small bag of toys from home, snacks and a million “No, don’t touch that!”’s were spouted. It was a rough one… but we had fun and I am sure I crashed hard that night.

Super Bowl Sunday holds powerful, beautiful and painful memories for me. On Super Bowl Sunday in 2012 Madeline made her First Communion and Confirmation. In a church filled with many Catholics anticipating the big game- looking forward to the inevitable silly joke the Priest would tell about the teams playing… instead those parishioners were part of a beautiful and lovely 5-year-old with terminal cancer entering adulthood in the church. I wonder what those people thought, if they still think of that Super Bowl Sunday. We left the church and went to an awesome gathering, a party full of people and Italian food and cake. I remember so many people, and the worry we had for Madeline… did she drink enough water, did she need anything. I remember feeling so grateful that on this scary yet beautiful day we were surrounded- the world gathered. Madeline was quiet, I know it was overwhelming for her, I know she felt sad to not be herself. I wish she got to fully enjoy her First Communion…

We left the party to head to Lake Placid for our ‘Whole Family Adventure’, a train of cars headed up into the mountains. I remember hugging my friends as we left for the mountains- begging them to enjoy the Super Bowl, just as they would have if this weren’t happening. I told them, thank you now go have fun, I think I wanted to know that they weren’t breaking too. We were all breaking though…

I don’t remember talking about the Super Bowl that night, I don’t think anyone put it on the TV, or maybe they did and I didn’t realize. I have no idea who won, who played… if the halftime show was scandalous or amazing. I have no recollection of the game. I feel like we were all trying to just be present and together and figure out what to do with the fear and pain and brokenness. It’s like the Super Bowl didn’t happen in that cabin in the Adirondacks…

The thing about the Super Bowl is that thinking about the game and that day makes me sad… but the part about gathering and spending time together is the part that is important to me. I do not care about teams or goals, I never remember to do the pools, I don’t know the rules of the game really… but I love how it brings us together- I love to gather. I love any excuse to eat nachos, drink wine, play games, tell stories and build community.

This year I have a goal to gather more… to do what builds me better. I know this time of year impacts me… I don’t even need a calendar, PTSD doesn’t need a calendar. My brain and heart would break when February comes around even if we stopped writing down the dates- PTSD just knows. This weekend I made a point to gather and adventure… not to settle in and clean and Netflix binge watch. I was really tired today, but I felt full and not empty, I felt a bit of mending- though not fixed. I know what community does to my heart and soul… what gathering means to me. I guess to some they loved that it was Super Bowl Sunday, some could not wait for the Maroon 5 concert… but for me I loved eating and laughing and squishing into my tiny house. I love the importance of Gathering, of building and connecting… and on an anniversary that breaks me, I chose to insert some building blocks.

Gather… laugh, cry, tell stories, eat, drink, move and enjoy this… even if it is Super Bowl Sunday, even if you are missing 1/3 of the most amazing Musto Chicks…