Feet to the ground.

A few months ago I got the.very.best.compliment.ever… “Erin you are so much less frenetic than you have been.” I was almost giddy to hear those words…

grounded

Rewind to last fall, to Boston and a DIPG Momma retreat… a weekend of reiki and art and connecting. Somehow, I was lucky enough to have 3 different Reiki sessions, all by different and amazing women, each leaving me feeling relaxed and ready for the next chapter of me. Each session may have been VERY different, the core message was the same getting grounded. It is pretty hard to hear someone acknowledge the way you feel and describe it so well “Erin, I see you floating away, like you are holding 100’s of balloons and flying away, up and away.” … or just that my feet are not touching the ground and I need to think and be cognizant of this, and keep them firm to the ground. I came back to Albany with a sense of need to get grounded and back to me, solid me.

Fast forward to working and taking steps to stand firmly, with my set of feet wholly on the ground. I could see the lack of order in my brain, the piles of disorder and how my mind just jumped from one pile to the next. I used to be much better at processing piles and navigating very stressful times, but last fall I felt pretty lost in the messiness. It’s been a hard go at life these past few years…

Acknowledging and taking actions to support myself better, to feel what I need to feel, to say ‘no’ to things that aren’t necessary, and breathing, just breathing have all helped me get some of my ducks in a row, to get my feet standing on the ground more often than floating away. I started to feel this spring that I had a couple ducks that were waddling in the same general direction, while the others were busy eating, chatting or heading the other direction… at least I think I have all my ducks in my vision. I started to feel a little more like me, although it took a few meltdowns (The Mother’s Day Meltdown of 2019) and a lot of emotional cleansing (which looks a lot like a crazy lady crying so hard that not one word makes sense and when she tries to stop it sounds like she has lost her air for hours)… the spring was a hard time, but it started to feel a bit like healing. I started feeling things I had to move forward from, things that I couldn’t take on back then because I had to raise my girls and function. It wasn’t missing Madeline this time, but feeling the pain of my divorce and how much I was hurt. I was far to quick to move and forgive, that when I stopped moving on and felt the pain it was heavy. I would again find myself crying as I drove through the Pine Bush, just as I did for years after the first betrayal. I tried to move on quickly and get to the next me, but this spring reminded me how healing works. Healing hurts, until it finally starts to not.

So when I sat with my Laurel, My Compass, this summer and she said “Erin you are so much less frenetic than you have been.” I knew that I was doing the work. I started to feel a little proud, maybe a tiny bit cocky about the state of ME. I was reminded when the world again didn’t go as planned… when I was left working hard to find my new path and it wouldn’t just show up, when my nephew broke all the rules entering the world… when I struggled to support my girls… all lessons and reminders of real important. A lot of stresses and struggles, riding right along so many amazing and simple moments. I started to feel frenetic again, not grounded. ‘My Compass’ agreed that I was hanging out in that crazy space of not completing a thought, or following through with anything on a list. I am back to that place of floating away, of not being grounded. I see it, I know it and I am going to change it. I started Yoga, Beachbody Yoga, to get my body stretched and aligned… but what I love is seeing my feet on the floor when I do downward dog, seeing them touch the ground as I push them down and my hips up. I am actively engaging in being grounded when I do downward dog…

I guess today I needed to sit and write these pieces, I have avoided it all. I have missed writing but at the same time knew that writing some things make them more real than my brain feels like considering them. I am looking at my feet when I do yoga, watching my toes grab onto the mat, acknowledging my attachment to the ground. I am working hard to feel and get through what I can, and I am trying to feel present and helpful in my nephew’s journey. I am trying to redirect my thoughts that are not important or have been acknowledged, there is no need for that pain if I felt it all. I am working to stand strong as ME… to feel grounded. I am listening to ‘my compass’ because thankfully I trust her. I started there, in that solid trust, that knowledge of her place in my life. I have built back up from that point…

This life is hard. These days are long, or short, but they are unreliable, so we must work on who we are through it all. Often times it is just a choice to see, to give perspective a chance… we can see a life of crap and loss, a buncha’ pain… or we can see the lights, the tiniest little nightlights and the beautiful sunshine lights as gifts through a moment that sucked. I am writing… that is a big step for me. I am working all the time on that connection of my foot to the ground, that choice to get through the pain and hard… and live life well. I am working on grounding me, so I can keep on building me.

 

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Welcome Messy Little Rainbow Boy

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

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

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

rainbow

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

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

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

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

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

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

Kind Kids

I love kind kids, like A LOT. I love seeing kids just go be good, to do good things. It reminds me of my lovely, Madeline was a kind kiddo. Her teachers, in preschool and kindergarten, described her as kind, compassionate and a connector. I imagine Madeline as a builder, a connector- a simply content human. I remember her loving Christmas lights and lemonade stands.

I love sharing Madeline, Maddie’s Mark and all I have learned about service. I especially love sharing it with kiddos, sharing life lessons in a way that kids can understand and I hope helps to build service into their future selves.

This Christmas has been hard, hard to find the light. I am trying, and working hard to make it magical and full of our traditions. Sometimes it is easy… but mostly it is hard, so hard. We got our tree, and we found a new place to cut, in true Musto Tree form these past few years- it keeps tipping to the side, fell over once already. We have put a lot of work into gift making and thoughtful ideas. We love to drive around and eat French fries and see lights (several times). We have watched enough Christmas movies for Lucy to sum up the Hallmark Channel. Sam ‘The Weatherman’ Musto, our elf has done a few naughty things, including drinking wine and making a mess… that DARN ELF. It is Christmas… it is magical, right?

Have I told you that I love kind kids?

So… this summer a few kiddos did lemonade stands to support Maddie’s Mark Foundation. I would try to get over there and not only sample the goods, if I could, I would bring a thank you and some MM gear. I love kids helping others, I mean I love adults doing service, but there is something great about kids choosing to use their time to help others. The MacTurk girls didn’t JUST have a lemonade stand, they got this idea to do a hot cocoa stand for all the people who check out the Christmas Lights across the street. They began on Thanksgiving night and have spent several weeknights and every weekend out in the cold, and it was VERY cold many of those nights, selling hot cocoa and sharing Maddie’s Mark. I love it, it is not only a generous gift of time and resources- it is the best to go watch the light show and see these girls there serving- BEST NIGHT’S EVER.

The MacTurk girls have been intertwined with Madeline’s story since Madeline finished her journey here and left us for heaven. Grace was in in Kindergarten at Bradt when Madeline was a kindergartener. Amelia and Grace were on an OM Team together, way back when- while Amelia and Grace worked on creative problem solving… Brenna (Middle MacTurk) and Lucy played and got into mischief… all the while Mrs. MacTurk would hold the youngest of the girls, Harper. As time has gone on school and OM and live have kept our clans intertwined. I really love how they have helped share the mission and the miracle of Madeline and Maddie’s Mark Foundation.

I am super grateful for these Kind Kids, and feel that their service and dedication are amazing models for other kids. I see their endeavor as a big commitment, and I hope The MacTurk’s know what role models they are building…

I am grateful for News10 for honoring these Kind Kids and so many others…

Go out into the world and be a kind one, help the other kind ones… buy some cocoa and enjoy a BEST NIGHT EVER…

Welcome November.

november.jpgThankful today. I am thankful that today is November, and October is behind me. I don’t know what it was about last month, but it was a rough one. Historically I am an October lover, I love the leaves and cooler temperatures, the soul warming foods… all of it. This year I just kept my eye on the prize and got through that month. I hated doing it that way, but it seemed like the only way.

Octobers of past are filled with planning and excitement, light in the dark and sewing costumes until midnight. I always make the girls costumes, we do pumpkin carving BIG, and my memories are brought back to the times I was pregnant with Amelia and just had Madeline. We did most of those things, they just didn’t feel the same this year. The costumes needed much less help from me, Amelia basically had a couple items I ordered from Amazon. She really didn’t let me help her. Lucy’s whole costume was based on a jacket I bought her from Zulily, that looked like a General in the Army (way back when). Her costume was simple for me. I realized that the times of making my girls costumes are numbered, a fact I knew but would have drawn out for 20 more years. I may have made my last fancy and creative costume for my girls. I am kind of used to time stopping, Madeline’s last fancy costume was a cowgirl with her own badge and stars on her western hat. She was so freaking proud… but it was her last. I had no idea that was her last… I wasn’t prepared for last year to be Amelia and Lucy’s last.

I was in a different place this October, a place I don’t recognize, a place I don’t love. When I tell people I didn’t even decorate for fall, they shrug and say “It’s okay I never decorate for fall” … but for me undecorating a season and decorating for the next is like medicine for me. I undecorated the summer and sunny stuff… I cleaned the house… but I never put up the fall and Halloween stuff. I don’t know why, I just kept putting it off. It felt like I was living in a different house… not a leafy and cinnamon scented house with the cutest ghost wreath. I decided to just decorate for Christmas and start prepping for Jesus’s birthday.

I think sometimes the reality of life just hits hard. October was so dark. It felt like a lonely month, a month of missing. A month of watching kids in 7th grade grow and become, a month of holding up my parenting card when Amelia FOUGHT hard for a cell phone… a month of work and life’s busy work. I hate sitting at my dining room table and eating dinner with just 2 people. I never imagined my life having such a tiny number of people sitting at my table…

I think October was just a month I was tired of doing all those things- decorating, making and sharing dinner, even mass. I know the right things for us, but I didn’t choose them often. It was a heavy month.

Today is November. The day was long, the sun was out. I decided that today was the day to decorate for Christmas. Today cinnamon candles, snowmen and Nativity Scenes were put out. It is time. It is time to start celebrating Jesus’s Birthday, for the light that it brings. We need some light over here in Schenectady. I am missing too many things; the light keeps me sane. Today, as I look around my house and listen to Pandora Trans-Siberian Orchestra… I feel lighter. I feel more like me.

I know October’s are lovely, but today I am crazy grateful for November’s. I am grateful for a fresh start. I am grateful for Jesus’s Birthday… and the lift He gifted me. I am grateful for my girls and my home, my life. I am directing my brain’s pathways to good places. I am grateful for a month linked to gratitude. I am praying that November wields more connection and more gratitude. I am hopeful for this time, I am tucking the hard times away. I acknowledge them, I think about them but it is time to put them away for what they are/were…. A hard time. Today is November 4th… a good day to start fresh and bask in the light (well the light that has now disappeared). Today is a good day to try again, to see the light and enjoy the love. Today is November…

Our Sparky Elizabeth Musto

IMG_20181005_092710On Friday morning Sparky Elizabeth Musto joined her sister Madeline in heaven. Sparky was born in November 2004 to a pretty awesome set of parents. I remember meeting her, I remember watching her interact with her siblings… they would all come out of their little area and she would go back up to the top and defend that space- she was my Queen of the Mountain. When I see pictures of back then we were babies… Sparky grew up with me, though she grew older sooner.

The day we picked Sparky up from Gilpin’s and she left her mom, I felt sad for her and excited and nervous. At that time, imagine that feeling of bringing a baby home. She was the most fragile and tiny animal I had ever held, minus Cortney’s hamsters. We brought her to my parent’s house and Matthew’s home… introduced her to her family. Then we headed back to Albany… through snow and all of it. It was dark and snowing, and Matthew hit a deer on that trip. I just sat in the passenger seat with my tiny little bundle, crying because the deer had to be put down. After that we shakily drove home to out new little house…

Sparky lived through it all. She was my buddy when Madeline was born, then Amelia and Lucy. As Madeline grew the bond between them grew… Sparky become Madeline’s trusty sidekick. She endured so much poking, dressing up, getting carried, licking cuts and even snuck in eating some diapers. We spent our days together walking, snuggled and playing in the backyard- the girls swinging and Sparky digging holes.

Just like Madeline, I can tell you Sparky’s best days were spent swimming in Lake Ontario. She would be in the water all day, only stop to bring you her large branch and mini bark until you threw it back into the water. So many times, the waves got big and she would keep that branch in her mouth and you would only see her tail… she would have rather died than lose her branch. We visited the Lake last November, Sparky enjoyed her last trip to the shores of Lake Ontario at Wilson’s Point. It was cold, but I knew it would be her last time… I carry that.

I remember the night Madeline died, I ran upstairs to grab a hoodie, then ran back down. I was behind Matthew as he carried Madeline to the car to go to the hospital. I knew Madeline would never cross that threshold again… I left here with a huge sadness that Sparky would never even get to say goodbye to her. How it must have been sad and confusing for her, one day her Best Friend was here and another that scent and that voice was forever gone… it has always bothered me. I saw a medium one time, she was amazing. She was super not what I expected, I mean her cat did reiki. She told me that Madeline had come to Lucy and told her that Sparky was to be hers to love and take that place. I didn’t even ask this… so I know it was Madeline letting me know. I could see it before that day, I could see Lucy taking on this important job. From the day Madeline died until the day Sparky died she was Lucy’s Trusty Sidekick.

These years without Madeline have been full of new and different for me, the girls and for Sparky. Matt and I got divorced. Sparky lost her guy, and on the occasions she got to see him and the rare occasions she got to travel to hunting camp she was in her glory. As per normal life is hard…

These last few years have been really hard, hard for all of us. They have been hard on Sparky’s body, and our time. It has been hard to travel with her, or find people to help us with her, she hated the time I was at work, she was used to me being home.

In true Musto Chick from we worked for a time to make sure that Sparky’s time here was filled with Best Day Evers, small ones for her to enjoy the time she was still here. Lots of walks, a Kong filled with peanut butter every morning, ALL leftover meats put in the dog dish, Wendy’s bacon cheeseburger, snuggles and lots of digging time in the back yard. At 14 years old Sparky could still throw a ball and find it, she could jump on furniture like a spritely, young dachshund. She was, for the most part, still Sparky up until she was not here.

On Friday morning a very kind and compassionate Vet came to my house. He calmly talked to the girls, Matthew and myself about what would happen and how Sparky would be comfortable. I once again sat and watched my girls send off a family member to heaven. A part of me wasn’t just sitting in this living room, she was in the hospital room, singing Madeline into heaven… a part of me was utterly broken. I know the drill… it is forever broken; my life will just build around it. Friday morning felt a lot like that cold February morning, only we were on my couch and we had an ounce of control. It felt like Madeline in that sad and beautiful way that death can touch.

I have struggled this weekend. I stayed super busy, I didn’t choose to go find people. I put it in my brain to fin order in chaos… to neaten up the messy that the last few years of Sparky’s life left. She didn’t have control, but now I do. I painted the laundry, filled in the door that she dug, replaced the cushion on the chest she loved to lay on. I worked to find order in chaos… which is my pattern in grief. It is almost like nesting… even Friday morning I was nesting. I knew I needed to prepare for the time to come. So, the house got clean, so that my brain could focus on the hard thing in front of it and just stay in the moment.

Life is hard. It is beautiful, right next to the beautiful is pain and hardship. They all ride next to one another. Today I sit, after all that crazy work, and I reflect and I cry and think… and wonder will I ever open my home to another dog…

… But I know the answer- love is worth it. Love is worth all the grief and pain and broken and hurting. I work with families who are going to say goodbye to their kids, I sat and played board games with a little girl who will meet Madeline soon. It hurts, but I could never trade that hurt in for easy- love is not easy, but it is worth it. Someday our family will meet our next Trusty Sidekick and we will love again…’

Does your day matter?

At the end of the day did it really matter? Did the things you did in your day matter or make a difference? Did you make a big deal out of a little deal, did you let spilled coffee or a fight with your daughter ruin your day? Did you stub your toe, back your car into the garbage cans or maybe forget something important? Did you get angry at the slow car in front of you or yell at the cashier for making a mistake? Did you stress all day about what wasn’t going right? Did you rush through the important stuff, trying to get your family to the next thing on the schedule? Did you fill your night with dance, soccer, tryouts, clubs, homework, reading and of course an hour of driving to all of the above? Did you go, go, go until bedtime and forget to enjoy your family, forget to eat dinner together?

STOP.

JUST STOP.

Hear me out. We get one shot, one chance to do this. We get one chance to do all the things we get to do in the time we have. Some of us will be here a long time, some of us will be kicking around on this Earth for over 100 years. Many people live to be 60 and 70 and 80 and beyond… they can reflect back on the speed of those years- missed adventures, funny memories and big bold moments. It goes fast. Sometimes it goes even faster…

Madeline only had around 8,700 hours to spend here, though we didn’t know. She lived them well, I can look back and see we did it pretty well. She should still be here, but we don’t get to pick the piles of life that we are dealt. Madeline had cancer- not just cancer but a fatal, inoperable brainstem tumor that always steals the last breath and heartbeat of those with it. She had a short life… a painfully short life.

We don’t get to pick… the hard stuff or the easy stuff. We don’t get to pick. I work with families that are going through the hardest things, not just cancer diagnosis, not just treatments… but add on Palliative Care. I work with families, often, who are preparing to say goodbye to their child. They need to hear that they need to trust their gut, that others opinions don’t matter and to try not to focus on those people who are living life and posting or saying things like FML. I am constantly using these life experiences and lessons to frame my life outside of support of others.

For every bit of missing, Madeline has taught me how to live better. I do my day with intention to do ‘what matters’. Sometimes ‘what matters’ is brushing something off your shoulder or reminding yourself it is a little deal. ‘What matters’ might be unpopular- but I try hard to choose it anyway. Oftentimes ‘what matters’ is inconvenient- we have dance, baseball, tryouts, meetings and beyond so we put off ‘what matters’… we try not to do that in our house. We work in the ‘what matters’… and we do ‘what matters’ together.

Cancer altered my perspective on life and living, on ‘what matters’ and time. I wish that lesson came from something else, imagine if I could still snuggle Madeline and watch her grow AND see life the way I now know it. I have never been a person who sees life for all the crap in it, and you better believe I.do.not.use.FML in my vocabulary… I see life for what it is. I see the amazing and hard, joy and pain, love and loss…

So… at the end of the day it is your responsibility to make sure you made the most of it, to know your time mattered. Remind yourself of what is a big deal and what is a little deal- also remember almost everything is a little deal. Remember that we are all doing life- with the hard and the joy, pain and the loss… right next to each other, that waitress or clerk or librarian or slow driver is going through life too. As far as overfilling your time- STOP. I know it looks like it matters, but it doesn’t. Don’t go to a random kid’s birthday party and skip seeing your family, don’t put all the work into 50 activities that keep you busy, don’t fill your life with a schedule. Schedule time for life… I promise you it isn’t worth it- I can only imagine what it would feel like if I had filled Madeline 8,700 hours with the filler crap and the activities that we push them into. JUST STOP… trust me.

We don’t get to pick the hard stuff or the amazing… but you need to be ready to enjoy the amazing and endure the hard. I didn’t pick Cancer and loss…

Make your hours matter.

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