Cheers to 5 years…

When Madeline was diagnosed, my brain kept repeating “What are we going to do?”.  To say I was overwhelmed would be a supreme understatement.  I couldn’t think ahead, I lost that skill.  My internal clock was set right to RIGHT NOW.  I remember driving home from the hospital with Madeline, on our way to Target, I looked at Matthew and asked “What are we going to do?”.  The words that followed reset my brain and focus- “Madeline will tell us what she needs”. 

… And that she did way back then.

… And that she does right here and now.

In the days, yes only days, that she got to be here on Earth after we knew she had DIPG, the world carried us.  We spoke, others listened and amazing, important things happened.  After Madeline passed I wondered “What am I going to do?”… how can this world keep spinning, how can the bus still drive by, how is everyone not screaming out and standing still?  Yet… somehow she still kept telling us what she needed.  We knew that we needed to carry on her legacy, but I could never have imagined the beautiful network she would create. 

Out of the darkness and grief and fear and broken…. Out of the ashes… came a way to make Maddie’s Mark on the future.  All of the marks she should have made in this world, chalk drawings and hand prints in my future home’s sidewalk, scratches in my car when she learns to drive, art work she was supposed to make and votes that she never gets to cast.  Her Mark is different, it is all that she was and all those she connected and all the ways God sent light to us.  Maddie’s Mark is shining light into other’s darkness, carrying joy right next to others pain.  Her Mark is carrying those families, like we were carried.  Her light is embedded in me, that dark and painful hole inside of me is brightened by a light that never leaves.

I know that Madeline is ok, she is safe and fine.  She was an amazing gift that I only got to hold for a short time.  She is an amazing light that I get to carry and shine on others for my forever.  I wouldn’t trade a moment of it…

Last night the foundation we created to honor Maddie and to help her leave her Mark turned 5!  It has been 5 years of carrying Maddie’s light into others darkness, 5 years of her sending in connections and support.  I am in awe of what her legacy looks like now, what it does for others.  She must be crazy proud and grateful.  I love the work that we do, even when it hurts or it’s hard.  I love it when my errands for a day include stopping to drop off dinner to a family who has a sick child at home, or bringing fingerprint necklaces to Albany Med, or stopping at target for a tablet for a little who needs it, or meeting with a caterer for a graduation party for a child with Leukemia… I love my job.  I am pretty sure there is something I get to do to leave Maddie’s Mark.  It is the best.

I am sitting here, fighting a nap, letting it all sink in.  Yesterday my Treasurer told me that she had done some math, like she does all day long, and determined that we have put back $250,000 into the community.  In 5 years we have invested funds that were gifted by others to create ‘Best Day Ever’s’… to create spaces for families to enjoy their time and to try to raise awareness for Childhood Cancer.  When Madeline passed away funds were collected by many to help us with medical expenses, experiences and maybe funeral costs.  The thing is… she only got 5 days.  When she passed she didn’t get to enjoy all of those funds or reap the benefits of extra medical care… so that became the nest egg for Maddie to leave her Mark.  Those funds were how the first ‘Best Day Ever’s’ came to life…

$250,000.  Holy crap.  I can’t count the number of families we have encountered and supported.  I have no idea how many big Best Day Ever’s we have done, how many people we have entertained at events, I have no idea how many little one’s have played on the playgrounds we have created.  I have no idea how many souls have heard and connected to her- that have become more aware of Childhood Cancer, DIPG and the importance of enjoying time.  How many little girls have come to the Madeline Father Daughter Tea and twirled and watched in awe while the dancers danced?  How many families and nurses have joined us on Thanksgiving for a comfortable and beautiful dinner in the midst of their child being inpatient in the NICU or PICU?  How many children have enjoyed a graduation party, a remission party, trip to a waterpark, new bedroom or a backyard makeover while they are stuck in a very hard and scary time?  So many…

I sit today and reflect on the businesses, donors, kiddos, moms, board members, nurses, siblings and all the others who have been connected and enjoyed Best Day Evers with us.  What an honor…

Last night celebrating these 5 years at The Point was such a special gift.  In the golden glow of the lights there, surrounded by exposed brick walls and the most inviting long dining room tables- all meant to connect and laugh and enjoy… I felt so grateful.  I am so blessed.  We all are.  In all of the hardships and struggles- the joy and light ride along as well.  Life is about loving and accepting what we are handed- even the pain.  Madeline gets to make her mark and ride this journey right along with us. 

5 years and $250,000… what else does this journey have for us?  Where will be all be in the years to come?  Where will the connections we just made bring us?  One thing we should all remember is we don’t have control of this, that we need to enjoy this present and be prepared for Plan B… Plan B and C often trumps the plan…

Cheers to 5 years of making Maddie’s Mark, creating Best Days Ever, building better and accepting Plan B (or C or G) and embracing what He is creating… sometimes He gifts you a Madeline, other times He trusts us to make her Mark.

… that hit me like a tractor trailer

Sometimes those moments just sneak up and hit you like a tractor trailer veered into my lane on the thruway.  I had to maintain composure- but on the inside I was a shaken up.  I managed to steer to a clear spot, saved for the moment… but my insides were still a hot mess.

I was sitting on the bleachers watching my Lucy play ball, Amelia had Sparky’s leash.  A few kids that I was talking to when we came onto the field were leaving and a mom I didn’t recognize asked me “How many kids do I have anyway?”.  I am sure she was wondering if all of the kids I was talking to were mine… and she knew it was a harmless question.  The thing is there is no harmless answer for me.  I think I stuttered, or asked ‘who me?’… then it felt like forever while my brain figured out the way to answer her the safest and most honest way.  The other moms sat and looked worried for me… my daughter’s father was standing behind me.

“I have 3 daughters, but only 2 are here.”  Crisis averted- honest answer that avoided darkening the sunny afternoon and embarrassing another mom.  Amelia said I acted annoyed, though I didn’t mean to be.  I really just didn’t expect it.

It is weird how that question is always a rough one… do I want to spend the time to explain Madeline being the oldest Musto Chick but is forever only 5 ½ or do I want to go into it with a person I don’t know and change the direction on my day?  The bad part is I don’t ever not want to include her in the count… so every time it is a different answer.  I guess it is part of this missing, part of this grieving process… though I often wonder when parts of this process become normal and not so Earth shattering.  I am guessing never, or at least never while I am still roaming this planet Earth.

When we got home we talked about that moment, Amelia applauded my honesty and noted that I have 3 girls and 1 isn’t there.  I told her that it hurt my heart very much, not in a way that she meant it to hurt.  My heart hurt because Madeline died and I miss her.  I mostly love the world, but sometimes I just hate it.  I hate that it spins- it spins! 

I talked to a momma who just found out she is expecting her second soon, some wondered if she would find out.  I went back to those days… those moments of hope and excitement.  I loved the preparing, the nesting.  I loved holding a tiny human and seeing the funny faces, the perfect hands that always wrap around a finger like they are meant only to hold a parent’s finger… I loved watching my girls sleep on my Boppy… watching them take each breathe.  I loved the faces we made when we would feed little ones… showing them they need to open up to devour their pears or sweet potatoes.  I really go back when I see a mom in Target trying to look at labels and still entertain their littles… lending their child a silly face and handing them something they could play with.  I still rock side to side in Mass, like when I used to have a baby…

Anyway, today we were talking about how different the second is from the first, as all progressive pregnancies and parenting experiences are I assume.  I only went to 3… so I guess others would know better.  I know for me that going from 0 to 1 was the hardest for me.  I was just me, me and my work and social life and travel and just thinking of me.  All of the sudden one day a hospital let me take home this baby that I carried for 10 months… inside where she was fine and cared for.  I felt like an alien leaving that day, like I was not  I went from the Erin I knew and loved to this different version of me, not ready to be recognized.  Erin as a mom…

It took me a long time to connect to Madeline, I had a very traumatic labor and delivery.  I understand it better now, that in my mess of delivery and hormones and loneliness and fear, I had postpartum depression to an extent.  As I healed and grew… Madeline and I became adventurers together.  She and I walked the wheels off a stroller… she saved me in my loneliest times.  Then came Amelia, mom’s groups and Lucy… and I started to know this new Erin better- I even felt like she wasn’t an alien.

Back to the hardest transition being 0 to 1… I learned to give up some control after.  I learned that we needed to work as a pod and when a new member joined we worked together to live and enjoy and nap and grow and cry together.  I tried to let go when things didn’t go as planned, detours and changes of plans need to be a normal with littles.  I also loved trying to figure out how to fix a change of plans with only things I had on hand… in my family we call it ‘Magyvering’.  I would challenge myself to fix the situation- sometimes with a diaper wipe and homemade onsie… other times with placemat and jelly containers as blocks- I would be super proud if I could do it for free.  I think I loved the challenge of having 2 and then 3… I loved best seeing them together.  My little tripod, my clan. 

I hate that my pod is so damn tiny now.  1/3 is never at baseball, 1/3 is never visible to the ones we have never met.  Stupid.  This world is amazing and beautiful and kind and hard and painful and terrible and stupid… I mean it keep spinning.  The sun comes up, the day goes by then comes dinner and bath and bed… and the sun goes down and it is still truth- the world can turn without her.  So must I…

I never know the next time I will be sitting on a bleacher or in an office or at an event and I will go back to all of this pain.  For now I am here… today it is softer than yesterday.  I loved going back to those early days today… for that moment of feeling her skin, hearing her murmurs, watching her breathe, feeding her food trying to avoid the spit back I might get and walking the miles and miles we walked together… our pod of ladies.


Grateful Heart & Easter



This Easter season really snuck up on me.  I really didn’t keep track of weeks or Fridays… and weekends just flew by.  It was a pretty nutty 40 plus days.  I don’t think I purposefully avoided it, but I definitely put the importance and holiness of this season on a back burner.  I love the preparation, including avoiding meats on Friday.  I like trying to abstain from something very normal, and I totally get other people with different ideas and feelings.  I mark those weeks of Fridays, and every time I think of the fact that I am abstaining I really do think about Jesus and all he gave up for me.  I watched as people went to mass last night… and wished I had planned to bring the girls to the vigil.  It is a beautiful service, with low lights and candles… it is an emotional mass.  They were too young to enjoy before and this year I chalk it up to poor planning.

Mass this morning was lovely, sunny and bright.  I loved seeing the children of people I grew up with, and the priest invited kids up on the altar.  I looked up there and in a group of 10 kids, mine included, was a child waiting on a best day ever and a set of red headed twins I have watched grow on Facebook.  The circle…

Life is a big circle- connections everywhere.  He is in the connections.  I waited for a profound homily or moment of connection to some of the words- but I kept focusing on the community and the connections in that sacred space.  I thought about how grateful I am for all of it; grateful for the connections, communities, blessings, mercy and grace.  I am grateful for this temporary home.

Easter is about the Resurrection, about Jesus giving his life for us and rising from the dead to join His Father in heaven, so that we too can join Him in heaven.  Someday I get to join Him in that paradise, Madeline already did.  If Jesus never gave His life on the cross my Madeline wouldn’t be in paradise- so I will be with her one day.

I wish I hadn’t missed/avoided all of the special parts of these past 40 days, but we can only be right where we are right now.  I can work on tomorrow and next year.  Having a year that I really missed all those bits reminded me to get back to it, and put it in the front.

I left mass today with a grateful heart.  Easter, today, is about being grateful.  Grateful for the simplicity and the constant love, for the support when times are tough and the grace to get by, for the roof and food and family.  I am grateful for my 3 girls, and for every day they were gifted to me.  I remind myself that I was never promised 100 or 1000 or 5000 days with my girls, but I am grateful for every day I have.  I am grateful that when those days are done and I am no longer the caretaker to my girls that they are in good hands- He will have them.  I can’t imagine not knowing she was okay even though she isn’t with me.  Thank you Jesus…

So today as most enjoyed the sunshine and the family and too much dessert I hope you let your brain and heart feel gratitude for the gifts in your life, for the strength to get by, the grace to move on, the support when life is unbearable… I hope you felt gratitude for the gift of a safe place to land and the most amazing paradise to call home.  I felt it. 

Thank you.  Thank you.  Thank you. 

For the first time in forever…

Pardon my little ‘Frozen’ song clip.  Last night was the first time in forever that I wore high heel shoes, which sounds like a little deal.  Last year I injured my ankle, and since sprained my other one when I took a digger.  I have rocked boots and flats and sneakers for many, many months.  I miss my heels, like I miss my cocktail dresses (but not enough to get to a point that they fit).

Anyone who knows me knows I always had a kick butt pair of black heels on when I went out.  I told Rick early on, even though we are the same height I will always wear high heels.  I love how it felt to wear those shoes, I even liked the next day when my feet hurt some and I put on sneakers.  I felt worth it to feel confident and beautiful.  Hence the missing these past months of those shoes…

I had to go shopping for an outfit yesterday… to the mall… ugh.  I had a great purple tunic dress option I wanted to wear, but I made the mistake of wearing it to work on my Birthday.  One friend thought it would be prettier with a big circle where pressed his salami… and salami oil doesn’t come off well.  The mall was a punishment place yesterday… rude people who budge in front and bump into us… not to mention I brought the kids who kept fighting.  I found 2 cute dressed on clearance at JCP and wandered over to shoes.  It is there that I found them… a pair I have wanted to rock for a long time.  I grabbed them up and instantly got nervous for the night. 


The what if part of my mind wouldn’t stop bugging me… what if I step in a pothole, or fall all off the stage… what if I get off balance and fall and reinjure my ankle???  Last year at this event just after I spoke and thanked everyone I stepped back and my heel got stuck in a crack on the stage… and there was ALMOST a disaster… what if??? 

I took some deep breaths and got myself ready and buckled the shoes… I walked in feeling and looking confident.  I managed to not fall, to not trip and to not get my foot caught in the stage crack.  I made it!!!  For the first time in forever… I rocked a pair of hot black shoes.

Last night, along with the black shoes, was a great night.  Maddie’s Mark was honored by the Schenectady PBA with a comedy night.  It was wicked fun, my cheeks hurt.  I just love events like that… sitting in a room FULL of people some who have no idea who Madeline was and what we do, others who have supported all along.  It is a special gift to introduce them to Madeline, Maddie’s Mark and the amazingness of our community.  I love it, it gifts energy right to my soul.  It is like a bolt of sunshine that gives me the energy to get all the work I need to done.  I am grateful to all of those PBA planners, they did an excellent job planning and setting it up.

Remind me to laugh until my cheeks hurt more often, seriously.  Comedians gifts are some I wish I had been gifted, but alas I get to watch and hear.  Life is so serious, so busy and full of paying bills and picking up and going to work and all that jazz… stopping to laugh is pretty important.  I think it is up there with going to the beach or on a hike.  I feel fresh today, like the morning is well inside me.  I love comedy nights, even if I am the one getting picked on. 

Sometimes my song is ‘Let it go…’ but today it is ‘For the First Time in Forever’… I am content and grateful for an amazing night with some awesome people.  I am wicked glad for my new shoes, and for all of the adventures they will come along on.  Today I remind myself, as the sun shines into my living room, that life is good.  It is good and hard, but it is good.