Silver Linings are EVERYWHERE…

This morning I was in work mode. I finally did a bunch of receipt and deposit work for the Foundation (I have thankfully found someone to help me with this role and am so freakin’ glad). I cleaned the house and have plans to grocery shop and prep for this week. Work, meetings, OM, best day ever work and starting hope bags… not to mention taxes and an event this weekend. Prep sounded like a good idea. I kept reminding myself as I cleaned the rats and wiped toilets that this will be done and I can enjoy the house tonight. It is my favorite feeling to sit in my living room, candles burning and know the house is clean. I guess that is how we know we got old… nothing is as fun as a clean house…

Anyway, back to the interesting parts of this story. I made chicken in the crockpot and had to dump it since it had been a bit of it frozen in the garage (don’t judge)… and I was dreading emptying and scrubbing the crock pot. I hate dishes, and laundry… and dusting. I think we could sum up that I don’t actually like cleaning. So I got my receipts out and set up my laptop and decided to multitask. I set the crockpot on the stove and set the new (HUGE) clean rat ball toward the back of the stove to dry. Little did I know that I must have turned the front burner on… I walked around the corner to a fire. I looked at it and turned the burner off, opened the door while the kitchen filled with plastic burning smoke… and stayed calm as I walked the burning crockpot to the driveway. I poured water on the burner and it sizzled and then all was dark and there was no fire. The kitchen and dining room were full of grey icky smoke so I opened the doors and windows, got the alarm off and washed the dishes.

I was a little annoyed with myself. Annoyed that I added to my plate for the day… then the positive bug hit me and I realized I got out of washing the crock pot. It cooled down and I stuck it in the garbage. I didn’t have to scoop the chicken out into a separate bag and get it to garbage then scrub the sides. I am currently crockpotless… but I didn’t have to wash it.

As per normal, there is a silver lining. I have a little more cabinet space, I know my fire alarms work and I didn’t have to bust out extra elbow grease. I will soak in the simpler dish was I had, until we all know the first time I go to make chicken or soup…

crock

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Life is a big mixture.

mixture

Thank God it is Saturday. I say that as I sit here with Pandora 2Cellos on… sipping coffee and doing my big to do list. What a freakin’ week, but next week will be better, I have a good feeling about this. Life is so heavy sometimes, and then somehow it gets lighter… or maybe I get stronger and start looking toward the brighter. Who knows…

Today I am working and prepping to head to Corning to hug my amazing friend… her dad went to heaven this week. He was an awesome man, funny and involved and loved his kids and grandkids. He was a super warm host when I ran my marathon and offered words of encouragement and stories of Corning. I learned most about him through his Cory, her bond and stories and closeness to her parents… her respect and funny stories from college and high school made me laugh when we talked. He was one of those Rockstar Grandpa’s that takes on the roles with his lovely bride when Cory and her Rich travelled. Seeing pictures of him with his grandson’s and travelling with his wife, would show that he loved this world. I also feel he knew he did it right, he lived. He lived even with all the hard stuff. He did the big stuff with his love and family, he enjoyed the days and he braved the times it really hurt. He left here having lived a life that we all should, content and loved. So today… I will take an adventure to Corning to hug his family and stand with them while they hurt. I will help them honor Jim for a gathering and service then a send off beer tasting, just as he would have loved. I hope God has a tasting station and sets Jim up with some pairing events. I know He’s got that part…

What a week… full of lessons, heavy, loss, scared and some light moments. It is always a mix… always will be and I am sure it always has been. Along with hard and heavy comes birth and life… as I saw in my feed I got a new cousin this week (so cute and fresh…), I worked with a bunch of pregnant women and talked about names and heard the tired and excited in their voices. I celebrated a birthday for an angel who should have turned 19 yesterday, but instead he has a legacy and a family here to carry him while he enjoyed calorie free cake in heaven with Madeline. I dealt with a mom that has tested my patience and reminded me that we can not always understand others, in fact we pretty much never can. We can control our own actions, keep our people safe and (damn those kind yoga people…) “Wish them well”. I know I am doing my job well, let’s hope that mom chooses to be a role model for her daughter to grow from. I pulled my very first tooth from Lucy’s mouth, I hated the sound… but her smile changed. I love seeing those moments mixed into this life… joy next to pain, hurt next to happy, sad laced with happy. Life is a mix…

The piece below is from Monday night… I am lighter and less tired today. I think I got stronger, or lighter… or whatever… but Monday doesn’t look or feel like Saturday… change is good..

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Some days are good, some days are bad and then there are those that just knock you down and drag you around…

Today was one of those knock you down, drag you around and then pull you through the muck kind of days. Today is a day I can’t wait for my messy head to hit my memory foam pillow. I think sometimes the hardest thing is only reacting for me, or mine… and remembering that others are responsible for their actions. The only person we can control is our own self, not others.

It is so hard getting to the end of a day sometimes. I think it can take everything in us. Parenting, friendship, work, responsibilities, sleep, living and thinking…. All take a lot out of us. I think I get caught sometimes, as we all do, in how much life can TAKE from us. I think sometimes I need to stop thinking of the TAKING and reflect on the parts that are giving and building…

Today was a Monday, not just any Monday but the one after a break. Today was the first day back for my amazing friends at school, but they were used to home and lack of schedule. It was a tiring day. My own girls had a hard time getting up and moving… I think we spent 20 minutes finding Lucy pants so she would get up and out of bed (I know I should be pushier, but she is a negative Nancy in the mornings). Meme was working out her own morning mad parts. It was altogether pretty nutty making it to the bus. I was thankful when Meme kissed me, listened to me tell her for the 100th morning in a row “put some chap stick on those lips” and then climbed the stairs onto her bus. I basically ran to my Jeep and picked up a coffee then got to work just in time to get one of my friends off the bus.

Lately life has been hard. I feel like my girls have been in a pile of transitions. I think in time they will be soooooooo good at transitioning and changing that all of this is worth it. In this present moment though it is a HUGE challenge. I have been working hard to follow through and give the right tools and support right along with the responsibility for our actions. Parenting is really hard.

When my girls were young I thought it was really hard, it was, but in retrospect it was such a different kind of hard. Life is now helping my girls with all the relationships and changes that life brings. I no longer get to pick their influences, instead it is my job to stand back and let them do that part. I have to let them live and grow and break and change and laugh and learn… it is so much harder. I used to be able to control their friendships… guide their reactions and if we didn’t get along with someone I just moved on and made that choice of letting go. This new now is not like this. I have to stand back and see my girls get hurt and react, see my girls learn lessons the hard way. You know what I have learned? It is harder to let your child break or learn… to hurt or be hurt… than it is to experience it all yourself. Damn parenthood…

Today I learned a lot about me… other than I cry a lot sometimes. I learned that it is imperative to help my daughter understand that we can only control our own actions, and that we must do our best. So I hope maybe we start mellowing out with all of these transitions.

Tomorrow is Tuesday. I hope it is a good Tuesday. You know the kind that end and you don’t just wish it were Friday. I think tomorrow will be a good Tuesday. My head will hit my memory foam pillow and my energy restored for another day in this crazy life. I hope the lessons we all learn are carried and help build each one of us better and stronger. I hope my girls know what a blessing they are to this world…

 

… I have an idea.

So often I am talking on the phone, in a meeting or driving and I get the best ideas. I might be thinking and thinking about a problem, or a need I have and have this big epiphany about how to do it or the perfect fit for a need. Sometimes… if you are lucky enough to be in a meeting with me you will get the outburst of the idea. I always hope someone understands the idea and the logic… I also wish that my ideas came in an organized and orderly fashion and not all blurted out. I guess in life we get what we get and we don’t throw a fit, right? I tell myself often to just work with what you got Erin, the tools and the piles… who knows maybe sporadic ideas and spouting of said ideas is a tool… perspective is key right?

So… I have this great idea. I am often flooded with offers and ideas to help… with best day ever’s, events, families and hospital needs. I don’t even know how to find places and people to direct the amazing helpers. I try to find roles and needs for the ones who want to help, it is important to help and know your hands or work or donation will be a direct help to a family. SOOOO… when my idea is a way for many people to make an impact on families I jump on it. I had one of those A Ha moments recently…

I work often with Albany Medical Center, the Pediatric Cancer side and the Palliative Care side. My heart connects to the Palliative Care side very deeply. In the only hours we spent at Albany Med with Madeline I learned less about cancer and more about The Journeys Program, a palliative care program to take care of children and families with the reality of terminal illness and shorter time here. A few months ago Laurel and I were working to meet up with the team at Albany Med and use our resources to help those families when the hard times and new realities hit. We talked about having ‘hope bags’… like welcome bags but not really welcome, you know? Things they will need for the long haul at the hospital, gift cards, snacks, toiletries and beyond. I had been talking to the social worker about a support group she was looking to set up, for the parents faced with this new normal. I have thought about this for a long time, what a support it would be. It would be a place for connections and advice and experience and just a little bit of away from the walls of the rooms. She was hoping we could help with feeding parents at this group and maybe be a resource for them as well. It made me really excited and glad that this would happen… and then the big idea started spouting out of my brain and not making too much sense to those lucky enough to hear in those moments.   You are lucky- writing is easier for me to do compose the thought and idea.

I thought… about what has helped me in this. I immediately thought of some of the books I have read along the way, the really powerful ones that helped me see and know and keep chuggin’. I thought what if I could share the books that helped me with those parents who were sitting in those chairs with their very sick children and hard lives. I know those books that I have loved would be a powerful message in a parent who needs supports hands. Then- BOOM… my big idea… what for it… what if I asked many people to do this? What if we collected books, important and powerful books that have helped and changed you and others… that have left a positive mark on your life? What if you could send a book that changed your world with a note to a parent you have never met, maybe a link to a blog or prayer… and a message of hope for them in their hard times? What if the book that helped you helps them too?

I am on this, I am asking my Herd and Polka Dot Tree Climbers to send a book or two, if you have more that helped build you. I am giving you an easy way, from miles away to support another and help build them stronger in this journey. I know which books I will contribute, my favorite builders. I would love to see what has helped build you and strengthen you. I am going to collect these books and notes, these ‘hopebuilders’… I am going to put them out and share them, so these words you send and notes you write will be there for the ones who need it. I know it will be a wonderful way too help from afar and make an impact on a parent in a crazy hectic and hard world…. A way to show them you are there for this journey too.

I would love to see many different inspiring and ‘hopebuilding’ books with words of love and encouragement and prayer inside. I know, in me, that this is a way to help in the moments of need and heavy without the need for big organizing and boundaries of the hospital and germs.

Send books, think about the best ones. Send books with handwritten notes and quotes and verses… fill them with love and support. Help build up a ‘hope’ library for those amazing parents working the hard job of supporting and living and choosing and surviving and getting their kiddos to the best place they can. Let’s do this, and fill that ‘hope’ library up!

So… if you want to send a book or two… mail to:

Maddie’s Mark Foundation   PO Box 203  Guilderland, NY 12084

 

These are my life changers, my ‘hopebuilders’…

 

 

Hard Days and Strong Scaffolding

Today was unlike any other day I can remember. Yesterday my daughter came home from school with a note that a teacher at her school was dead. I had heard through the day about a crime scene investigation and a house fire, but I put it aside to get through my meeting at Albany Med with the chaplain for the Journey’s Team (pediatric palliative care team). I had to talk about how we are going to work together to be a resource for families when their child… becomes a part of this extra hard journey. I left my meeting feeling good about what we were going to do and how it will help. I had some ideas and thoughts and headed home to my girls and our valentine’s and 100 day projects.

There was a note in Lucy’s bag telling about the teacher and the events that had taken her life. I immediately thought about her, about this quiet teacher who would smile when she walked through the halls with her kids. I remember sitting and eating lunch next to her and she might talk to a teacher about how they can work together to support and teach that child better. I mostly remember her calm energy and the smile she always gave me when we made eye contact. I felt so sad for her older son and all the loss he was experiencing… all the milestones and life events that would be different from this moment on. In the blink of an eye, at least in life time, he lost his mom and dad and brother. So much loss…

I don’t know the details around the case, in fact, I feel that the details are not for our eyes and ears. I feel that the son that is here should have respect and love ONLY… not detailed articles and comments by people who don’t get it. He just needs love. He needs the world to remember his momma for the person she was to him and his brother as the little brother he is. I know that none of us know the struggle and the fight that went on in his father’s brain and heart and soul. We need to offer support not curiosity and proding and sharing far too much. He deserves just love. He deserves people and places that let him be him- and not make this travel with him. He has a long road ahead of him…

Today I worked with a new friend at the school that Lucy attends and this lovely lady taught at. I got to school and it was buzzing with parents for morning program and valentine’s parties. It felt pretty normal. I took my break and sat in the teacher’s break room… I read the literature and chatted with a friend and then a hospice counsellor. I asked my friend what the conversation looked like when you spoke to a child who was her student. I have wondered for a long time what the day Madeline died looked like for others. I wondered what the system looked like for the faculty and students. Today I saw it…

It was harder than I thought. I didn’t think it would hit like that to see grief counsellors and teachers somber… or maybe I did and I didn’t let myself think about it. I felt glad for the system and the structure that is in place for these days. The support that just pops in and starts working and carrying. It made me comforted to know that the day Madeline died probably looked a lot like today and yesterday… many adults taking care of children and helping them understand the fact in the way they can comprehend. Then coming into the break room and breaking… working to use the right words and help their students along with their own loss. I felt so heavy today… so heavy for her, for her son’s… I felt heavy for Madeline. I don’t normally feel that way at school… but I barely had the energy to get through the afternoon. I felt like a robot… yawning and trying to converse.

I love our Bradt family… it hurts that one member if gone. I don’t understand why or how or what if… but I do know that we aren’t really able to understand SOOOO much of this life. It is our job to move and live and breathe and carry… when the world hands us a heavy we allow others to carry us. My heart and brain hurt for her oldest son… a boy who should get to be carefree with friends but now has this pile of hard, super hard. So we carry him… we make that pile a little less work to live with. We can not take the hard away but we can make the rest easier… we can support him. We can make his life simpler so this weight isn’t mixed with a bunch more weight (food, college, grief, dances, sports… whatever he loves). He has lost a lot in only moments… be kind. Love him and love his family anyway. We don’t get to choose mad. He get neutral from us… neutral love and carrying…

Please send prayers. Send love and support. I am glad to know that systems are in place for kids and families immediately… but sad to know that his loss is so big and multiplied by circumstances, choices and media. Send love. Be love for him…

 

If you can support this boy who needs mountain movers… please do.

https://www.youcaring.com/noah-520173#.Vr0KmiiLh9I.facebook

http://wnyt.com/article/stories/s4044544.shtml

 

4 whole years.

So it is different. Life is different- all of it. It is strange to me though that I don’t feel like this life is all ugly and sad and bad… but instead it is beautiful even when it hurts. There is something beautiful in the light as you walk through and work through the dark. Any tiny bit of light is bright in the darkness and the hard times.

Madeline has been gone for 4 years now. It has been 4 years since that night that we walked out of our door for the last time as a family of 5. I knew when I heard her breathing that this was the last time she would be in our house. I did not know how long, but I knew. We rushed to the hospital, the words “Have you signed a DNR?” were spoken and I remember sliding down a wall in the hallway. In only a few hours our lovely was gone, peacefully and together- but gone forever. These 4 years have passed like a race and molasses. Times that rushed by, moments that felt like years, minutes that must not have happened because they are either not remembered or too fast… then other days that felt like you were stuck in sludge working every single muscle all day long just to get to the other side only feet away.

4 years and it feels like yesterday and 100 years ago… time is different. I have a hard time remembering times… or maybe I have a hard time allowing a plan to happen at a particular time. Appointments and games and commitments all require a day and time on a calendar. In my brain things can happen that change that schedule too fast. In only moments, it felt like seconds, my life was forever broken, though some patches and scabs have formed, I am still forever a different person- a broken soul. I am a mom with a hole in her soul, a big deep hole that is unfillable. It isn’t like a void that people fill with addiction or relationships, hobbies… that is different. This is a deep gauge out of my person, out of the part of me that was whole as a mom. Sometimes I can’t get out of that deep hole and the tiniest bit of light reminds me to buck up and feel my hope, the hope I reserved or need to recognize on those days. Time can feel like it stands still or it moves so fast… 60 seconds doesn’t always feel like the standard measure of time. It’s kind of like how Mondays come fast but Fridays take forever to get to. In this way, that is my life and new understanding of time. I have a really hard time remembering times. I could have reminders on my phone and still miss things. It is very challenging for me to set dates up and times for things. Time is a weird idea for my brain now… I think it is a part that grief has altered in me.

When I think about the fact that it has been 4 whole years since I laid my head on Madeline’s chest and heard her heart as it worked harder and moved slower… 4 years since I last touched her skin and held her… it feels like forever and yet I know I have so many more 4 years to continue to do this reflecting. I imagine I will be here for quite a while counting the years since and looking forward to the years moving me closer to her. This is the normal for life as I know it, until life as I know it no longer resides in this body of mine.

What will that first hug be like? I wish Madeline could zip over here and hug me for only like 10 seconds (with my messy time brain it may feel like a millisecond or 15 minutes) it would be the best 10 seconds of my life as I know it. Imagine if every year we got a little visit and a SUPER hug, even if only for 10 seconds. My skin misses her so. My eyes sometimes see her in Meme or Lucy, in a smile or a look. I know it is HER, in them… maybe my hug is that she comes out in them. Who knows… Every morning Lucy wakes up and I sniff her morning breath. She has the gift of Madeline’s exact morning breath. It isn’t every day, but it is a brief little smell of Madeline. Maybe that is her hug…

So four years are done… there have been more tears, more growth, more adventures, more challenges, more loss… it has been a long year, or maybe just 365 normal days for you all. I am still standing and living and growing and breaking and wondering if I am doing it all ok… mostly though we are still chuggin’ and lovin’ and livin’ and rememberin’. We are entering new areas of parenting and growing that are downright terrifying. I admit that I am scared now to have girls as we enter the next stage… but I love those stinkin’ ladies. I never imagined being a mom would make me be this me… but I love it. I miss Madeline but I love the beauty she brings. I love nature more, I see her in the sky or a sunset (not every sunset, some are for others). I LOVE rainbows and know when she sent ME one. I still hate snakes, but am trying every other new thing I can. I am going to head out of this world knowing that I lived it up for Madeline. She will have many adventures in me and with many before we head to heaven. I love trying new things… I even like shrimp (not fried or chewy). Life is about this… I try new things and hear her little giggle and see her dimple. I know she would have loved this weekend with us.

My family went to Lake Placid together, a city most of us had only visited while Madeline was sick. We went in honor of her to enjoy time and see the Ice Castle that we saw when Madeline was with us. We saw it light up and watched the most spectacular fireworks. I watched my nephew who is 1, stare in awe at the fireworks. I thought about the book Sargeant’s Heaven, that we read often after Madeline passed. It’s an awesome book about brother’s who drew their brother Sargeant’s heaven, after he died. I remember the book, that we could recite, talked about how heaven has the best view of fireworks (along with not needing a Halloween costume because they are ghost… and other great things). That fireworks display felt like she could see it. She was glad we got there, to that spot, and watched and were together. You know how hard it is to travel with a buncha family… someone always has to pee, or a kid needs to nurse… or someone is hungry. It is amazing and hard work. It was perfect. I missed a few people (well a sister and brother and a buncha kids). It was exactly how this year should look… I am glad for that time.

Tomorrow marks 4 years… it has been 4 years since Madeline’s sisters sat with Matthew and I, sang to their sisters. We sat on a bed with a beautiful 5 year old as she transitioned… and sang what they knew… ABC’s, You are my sunshine and others. It has been 4 years since I walked out of the emergency room doors and got into my Jeep and felt like a terrible mother for leaving my daughter… I had never left her. We drove away as a team and within moments of life, or maybe years… that team dissolved into what it is now. Parents of 2 girls who are here to love and help grow and 1 that is all good and we share, mostly separate. It is strange how different parts are lost and different choices are made… some of us travel in circles and others move forward and grow and try to stay in their own lane… try to carry and live and grow. 4 freakin’ years…

Do something tomorrow… February 8, 2016 to share Madeline and her energy and spirit. Share her, how she changed your life… do something kind for someone, talk about childhood cancer, tell the world to enjoy their family and time… spend time with your kids or family… make time for adventures. Say yes to something new tomorrow… shrimp, bungee jumping, a new book or a date… who knows. Live for the ones who aren’t here…

Self-Care… Important Now and Later

Self care

I was lucky, while at the CURE Childhood Cancer weekend, to attend some amazing breakout sessions. They offered a session on sibling grief, I found this very informative and learned a lot, the leader of the session not only spoke from experience she had facts to back up. She was AWESOME and informative. How often are we in a room full of others doing the same job- getting our kids through while getting ourselves through as well. I walked into the session on Self Care, embarrassingly enough, a little cocky and feeling like I do this well. I thought, just maybe, I could use a reminder. Fast Forward… sitting in a room full of people who get it and feel it all… working through the same worksheet. I think most of us sat in a room together realizing that we thought we did a good job taking care of our own self… but when we laid it out we weren’t doing all the parts of taking care of our bodies, minds, souls, health… all of that jazz.

I sat in a room where some only lacked high scores in one area… and lacked across the board. I realized that I am VERY… what’s that word Laurel???? Frenetic. I am good ad doing a mediocre job of caring for the parts of me that need to move and live and grow. I need to find center. I take care of everyone… well a lot of people, I need to take care of me. I flew a ton this past week… I heard attendants tell me over and over to take out the packet and look at the emergency procedures… and ALWAYS put your oxygen mask on first. I get the logic in that, why do I put myself last in life? I give and give, and what is left is too little for me to do much with other than sleep.

I worked a lot of self-awareness and myself these past weeks… in order to share and be stronger I need to get STRONGER. So… I thought a lot about how I have handled Madeline. I thought about how bust my life is, if my life is busy to not feel Madeline… do I put things away that I need to deal with? Am I feeling the grief of this loss… I was scared I would come up with an outcome of me not taking care of this part of her death and grief. I was instead more aware that this heaviness isn’t her. I could not sleep the night before last… I thought about all of this. I woke up to a very clear connection- a connection of this weight I have gained as a literal piece of all the grief and anger I have carried this year. I woke up with this feeling that I need to chip this mad off of me, that this weight is truly on my body… 40#’s of anger and mad and hurting. I need to chip that off my body and soul. I felt mad at me, but then I thought about it more. I have been through a lot. I can say that about my girls… but in me I am hard on myself. I need to be kind and push. I know how strong I am. I know I can chip and chisel and hammer this mad off me… so I can run and move and live lighter.

Self care is so important. I thought about how I tell so many to be kind to themselves… to take care of yourself… eat well, laugh, cry, work out, go to doctors… live well. I am terrible at filling my own needs… not even my fancy needs… just basic. I made it my job to do better on that assessment next time. I am trying. I think it is better if I can commit to this. I am going to eat and cook and make dinner with our little family and make it feel good again- not just the healthy food but the smaller table. I am going to work out and get my run in… runs help clean my brain and body. I miss that cleaning, that brain washing conversation and practice of healthy and good breathing. I need to think and be still more. I am terrible at this one. I need to find my center and build it stronger… and make the path to it easier. I need my normal self to jump to a more centered and less ‘everywhere’ me. I make good decisions, I am a great mom and I love my life… but I need to maintain a healthy pillar in the middle, not the random ropes that hold up my tent.

So… this week I worked on this. I worked in the ways I knew, as opposed to a new way. I made it to the gym. I loved up on some homemade eggplant parm… and it made me feel loved and comfortable. I cleaned my house and put out flowers and loved my space. I wrote more than I have this past month. I worked out every single day, even if it didn’t fit. I talked and went to counselling and helped me to be stronger and more sure. I tried to be still, all by myself and think. I let my Sir cook and snuggle. I slept a ton this week and last. I am trying. I hope the next assessment I look and see progress and I am not mad at me before thinking I could do better, but knowing I am doing what I can.

I think the sessions this past weekend reminded me to keep working and chugging. Those breakout sessions reminded me to assess my health, connections, exhaustion and relationships. They reminded me to keep working and building and loving.

I did well today… at least my body knows so. I worked out and caught up with friends… I got a pedicure, ate lunch with a friend and came home to take a nice bath. I am moving on to a movie night and some still time in my own house, on my own couch. I am trying to figure all these parts out and be better about the taking care of me, putting my oxygen mask on first. I think it is a big step to see the lacking areas for me… the parts that need more of me to care of me. It was a big step to really assess and be honest with myself.   I think it is only fair to offer myself a shot at balance and fit and content… at caring for me and loving me. I kept wondering what I was forgetting while I did things for me… then realized that I need to just do this. I need to get to the end of today and care about me… and put some emails off (if I put your email off it isn’t personal). I need to do this important work, chip this heavy off of me and live and move and breathe sans all that heavy baggage of the soap opera parts of my life look like. Screw the soap opera, I am me… screw the ones who chose chaos and drama and mean. Screw the mad I carry… I don’t want it anymore.   I am turning it in. I am getting rid of all the baggage of this past year so I can enjoy more, love me more and be healthier.

I need to refocus and refind my balance. I need to find that middle ground I worked so hard for before, the part that isn’t all riddled with rollercoasters. I took last weekend’s breakout sessions as a reminder, maybe even a challenge. I want to chip and chisel this mad off… to find the Erin that is underneath all of it. I am sick of hurting and feeling angry about what people have done and continue to do to me. I am sick of opening myself to manipulation and guilt. I hand it all back. I don’t want it, I don’t deserve it. I am a grown woman. I am me. I am the very best me I can be… and I am going to work this heavy, icky burden off. I think the epiphany I had the other day that these extra 40#’s are literally the mad I carry. I need to stop working on these 40#’s and instead work on the whole me… in doing that I will be chipping them away- bit of mad by bit of mad. Erin is more than mad, she is stronger than that… I know this as a truth in me.

So… today I woke up and enjoyed a short run with my favorite guy (minus my dad) and then get my butt kicked in a Y Fit class… seriously that guy George brought me back to that feeling of mixing cardio and weights… challenging me to finish. I highly recommend it. Now home to do some work, then go avoid work and eat Indian Food with some awesome ladies. Balance people, balance will get me back to the Erin I miss. Be ready, she is back. I am not going to let myself slump and fail, I only have me to beat yesterday’s me and last week’s me… I need to get that self-care aspect back. I see it now.

Welcome back Erin, to the world of letting go and giving it up to God. He can carry my mad. He’s got this… He reminded me. In his oh-so-clear-way… of bringing cocky Erin back to grounded Erin, the Erin who thought she was doing well at self-care and self-love… and reminding her that she has not got this. She needs to keep working… He is good like that.

My Experience of a Lifetime… sharing a lifetime.

A few months ago I was invited, after many conversations, to speak at a conference in Atlanta, Georgia. CURE Childhood Cancer Organization invited me to speak at their weekend of Hope and Healing, a parent’s grief weekend full of sessions and speakers. I was excited and terrified, and worked for many weeks on the speech and presentation. I think I didn’t write out my thoughts for most of January because I was working and thinking so much about this amazing and scary opportunity.

It has been a long time since I felt so excited and scared, anxious and proud. It’s funny when all of those emotions mix… sometimes it feels like that with Madeline- happiness to look at a picture of her in a red polka dot dress and hurt for not seeing her right now. Scared next to excited, happy next to sad… all those mixes. Every step of this adventure was new for me, planning a flight and prepping a power point, and choosing an outfit (which was hard and required endless trips to Marshalls and rethinking and overthinking…). Finally the weekend was here and last Friday I zipped out of Albany and headed South to Atlanta waiting for a stranger to pick me up…

So… Karen was totally not a stranger for long. I spotted her red CURE tee shirt and we quickly chatted and grabbed luggage and started on the LONG drive (traffic in Albany looked pretty awesome…). I settled into the hotel and we all (the others lovely ladies of CURE) for dinner. After some discussion about Cheeseburger place or Cuban food, Panera it was. I loved listening to these ladies, Lisa I had talked to often and she was in charge of a lot of the weekend. I sat there and took in all the accents… I freakin’ love southern accents. I was mentally storing the cute words and the different words. I crashed pretty early that night after catching Pretty Woman and rehearsing one more time. I woke up and called my mom… blow dried my hair, put my lips on and put on some of my ‘armor’… and headed downstairs for breakfast (only I was too late for breakfast). I got settled and introduced myself to some and sat waiting for my turn… nerves and sweat almost wrecked my cool blue sweater. I walked up to the podium and was more nervous than I thought I would be. I looked around at a room full of my moms and dads, some grandparents and a few others… who had all lost their child to Childhood Cancer. Every single chair in that room (minus a few volunteers) was occupied by someone who ‘got it’. Some of those parents had lost their child only 3 months ago… I remember that raw and numb. Some of those mom’s and dad’s lost their lovely 15 years ago. We were all in different time periods of grief. Some of this is what I was scared of, some it was my message. I speak and write about my faith and God and heaven. I was scared at how that would be welcomed or not. I stood up and did my job, I tried to stay me and share this journey. I tried to share the pieces that I am pulled to do. I shared my strengthened faith and love for God. I shared how I wish I could have Madeline back but instead I must carry her, and when I am too tired to move I must let her carry me…

I said far too many ummmms, I had a hard time with the remote (2 step directions are challenging for me) and I told it like it is for me. I prayed my words would be welcomed into any that NEEDED them and I spoke. I pray now that it can be an opportunity for future adventures in sharing. I loved every minute of the weekend and was honored to have been chosen- but thankful I was invited to participate. The candle lighting ceremony was amazing… I watched a slide show and felt that bit of happy in my heart to see the smiles and the normal for many of the children. I felt connected when I saw their name and realized I had talked to or sat next to his or her parents earlier. I saw 5 year olds with big grins and teenagers being all independent. I saw babies with tubes and toddlers with no hair. It was hard. I think I focused on not crying, not letting myself get there, then I thought a little while before Madeline that this is the place. Feel it. Let it go… no one in this room cared about my mascara… or the fact that I had no tissue to fight back the wet eyes and drippy nose. I just let myself feel it for those moms and dads… then Madeline Musto came up. I lit her candle and felt joy and sad… that mix that most don’t understand. I was glad to be in this spot to honor her, but sad that she wasn’t there for a big hug and nibble. I lit her candle and watched. After the ceremony I watched again and chatted with some mommas… it’s a weird and hard event to experience together. I felt bonded to those parents faster than I could normally bond with most, at least in that moment. So… I finished and attended some breakout sessions and thought a lot about sibling grief and self care/love. I realized I have a lot to do. We all do, but I scored low in too many areas of self care and I am not going to do that next time I sit down and assess. I have far too much to offer and achieve and feel to not take better care of all parts of me.

I crashed early each night, by the light of cable TV. I never watch TV in bed, unless I am in a hotel room and have access to HGTV all night (I don’t have cable anymore). I burrowed in my fluffy white bed with both beds worth of pillows and watched House hunters remodel until I had to switch to something else because the couple drove me nuts. It was an amazing and refreshing weekend.

I woke up this morning, loving my Meme. She has been sleeping a lot with me again lately. I poked her and told her she was my favorite Meme. I pulled her over onto my arm and made her snuggle close. I love that I don’t have cooties and no one wants to snuggle with me. We woke up, had a rough morning and then headed our ways. I woke up this morning proud and glad and home. I love home, hate my house sometimes but I think that is a product of divorce more than Madeline. I love that Madeline’s feet have wandered through the house… I hate that my ex-husband and others have put their feet in my space historically. I think someday I will leave this spot, or change the floor… or something. For now, I love when I love home.

So… without further ado…. Here are some pictures of the weekend and my speech. I would love comments and help to build the message and my Polka Dot Tree Climbers… someday when I grow up

I want to talk and write and build and share…

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My speech- written, but spoken more from the heart.  I changed a bit and told beyond ❤

I am so honored to be here today in Atlanta, with all of you sharing bits of this journey. I know this journey is one that I share often, but there is something that feels SO new in sharing with a room full of parents who each have this kind of story. I want to start with a little introduction…

I am Erin Musto, momma to Madeline, Amelia and Lucy Musto. My set of chicks that God gifted me. I have many other roles, and always have- but being a mother to my ladies has been my favorite, most rewarding and most difficult. Parenthood is hard, very hard. I used to have days when I felt for a few minutes that it was EASY- then someone kicked someone or something broke or someone puked… and I was reminded to keep working in this hard role. There has never been a job in this life that was so amazingly— full and hard and fun and terrible and easy and treacherous and heartbreaking and joyful-all in one day, heck all in one minute. If you had told me when I was 18 this was what 33 would look like I would have quit right then, but I know in me know I would have missed out on the amazingness and brutal parts that make ME this very me.

I am here today, with all of you amazing parents, to share the part of my journey that overlaps with yours. Almost 4 years ago, next week, my oldest daughter Madeline left our world. I was dropped into this club that we are all a part of abruptly, it was terrifying and lonely. My daughter Madeline, known to many as Maddie, was diagnosed with Childhood Cancer- DIPG to be exact. On February 3, 2012 we were waiting and hoping for a Doctor to come tell us we needed to up our daughter’s iron, or give her a pill for an infection- but instead we were greeted by a Pediatric Neurosurgeon and met our first Pediatric Oncologist that day. In a world where I thought Childhood Cancer was Luekemia and chemo and treatment… I was ignorant and unaware of what Childhood Cancer REALLY looked like back then… I learned quickly. Madeline was diagnosed that day with Difuse Intrinsic Pontine Glioma- a super big word that might really make sense to many of you… that means she had weeks or months to live and there was no surgery, no chemo and optional radiation. There were few trials and it is 100% terminal.

Cancer was dropped onto my lap… actually it was a 500 pound weight thrown into my chest… it knocked the wind out of my chest and the feelings out of my heart. We just functioned, and thankfully a super smart doctor said in those moments “Enjoy this time you will have forever to be sad and grieve”. He was so right… he changed our perspective and those few words made us refocus on living not death.

In that time we let the world carry us and take care of the details for the easiest time with Madeline and our girls. Madeline made her first communion and confirmation and our whole family cousins, aunts, grandparents all together and squished in a house in Lake placid. We had a family photography session that caught those moments we needed to look back on. It was exactly the way that time was supposed to be spent.

Madeline passed away on February 8, 2012… only 5 days after her diagnosis. We were only gifted 5 days with Madeline…

Madeline was a vibrant, kind and compassionate kindergartener. She lived nad enjoyed the simpleness in life with her 2 sisters and her trusty sidekick Sparky. We spent our days at the playground, playdates and eating far too many munchkins… they loved the YMCA daycare and I loved my 1 and a half hours off… and we really just lived a fun and simple life (right next to all the fighting and biting and hard moments). Madeline had a peaceful energy about her… a way of loving everyone anyway. She was quick to parent and guide the little ones, and I honestly think I would have forgotten to feed lucy often if madeline didn’t remind me about her (poor third child). Madeline had this look and dimple that backed up her loving peaceful way… and a dreamy part that made the best inverted bob ever. I miss her like crazy every.single.moment.

Madeline’s diagnosis and cancer were very rare. Her tumor was not only inoperable, but also pretty much untreatable… we left the hospital with only a low dose steroid. I had no idea that her tumor would rupture and she would be gone so soon… It took a long time for me to fully see and feel the loss of Madeline. It didn’t feel like cancer, as I understood it before. I know now that my brain and heart and soul weren’t ready in the beginning to feel and know- I see it now and know it was shock and some denial. I think it was more in the lines of shock, I functioned far too well. Maybe you did too, maybe you, just like me hugged people and reassured people at her funeral. I told them it would be okay… silly me. I know now I was not fully present- there was a different version of me… one that could function and survive. It was a shell of me, that just got through those moments… real me was floating above not understanding what the heck happened.

Cancer took this… it took her- but she was sooooooo much more than cancer. I am sad when I think that some people think of my daughter as the kindergartener at Bradt that passed of cancer. Madeline was freakin’ amazing. She isn’t just cancer, in fact that was a tiny part of her story. Madeline was a peacekeeper… a kind chick and a lovely friend. She had tantrums and moments- but she was so different than most. Imagine a compassionate 5 year old… who ALWAYS thought of her sisters before herself. I remember going to her kindergarten conference her teacher just said “I have no issues or criticisms, Madeline is amazing. I should have more to say”. She was so different, as were your children I am sure.

Cancer was only a few days in her life, and her death was only one day in that. Her life was more than 2000 other days that were just her and perfect and imperfect. Death is one day… I can not imagine my daughter being remembered for just that one day- that one day that broke me, broke my daughters and STILL hurts… she was soooooooo much more than any one day.

I have learned in this journey, this crazy and messy and complicated journey- that this is MY journey. It is different for everyone in my life just as it is different for you and everyone in your life. I see my girls and I know I have never lost a sister, I can only relate in loss and pain as a mother. I can only know and understand MY journey in this…

This is my journey down this road… it is filled with my lessons, my adventures, my faith and, my soul. What I have learned and built is different than what you will build and learn. So much of my journey is based in faith, faith in God and heaven. I know this journey is different for you, but this is my where my soul has brought me, to this very spot with this very message, to be here with you all.

Life with grief has brought so many gifts and heartaches… but most of all it has clearly brought many lessons and pieces of knowledge about life and how it works. I feel like the lessons are the bits I need to carry and hold and remember… to help me build and move and live on…

One of the most confusing things I have learned is how different and complex grief is. I used to look at grief and mourning as very simple things, as a piece of death that people get over. We date mourning to a small amount of time that some things are appropriate, grieving people follow this wave I used to hear about a little bit denial and depression some anger then mix a little acceptance here and there… BAM.   Grief. I think because I had only ever lost old people back then, old neighbors and friends grandparents. Death was for the old and just was the way it was.

Grief is so much more than that. I was shocked to feel how physical grief is, did you ever have the 500# weight sit on your lap… and you could not move. The bus would come and deliver a buncha kindergarteners to other moms and dads and not to me… and I would sit in the chair and a 500# invisible person sat on me and I was useless and could not move. Grief is so physical… although those moments don’t happen so often now, I can still feel them and the hurt and empty they were a part of. When they happen now, for all that they hurt I love them- I carry those hard ones right next to the joyful moments of Madeline.

TO understand some parts of our own individual ways of feeling and moving with grief- I think it is important to also a bit of where we all come from in this. Grief can exemplify differences in spouses, friends and beyond- those differences can help build stronger or create a rift. We all carry into life our background story- with it come customs, traditions, stories, religions, nationalities, amounts of loss and how our parents let us understand death.

I came from a huge Irish Catholic family- my grandparents had 15 kids and almost all of those had a set of their own. We grew up VERY close to my mother’s side and were regularly surrounded by people- uncles, cousins, adopted family. Holidays were crazy and the few deaths I remember were like potluck family reunions. The family member who passed was thought of and talked about as community members and families stopped to offer condolences. There were often kids around playing in the back room and not understanding this as a super sad affair. Maybe this is because we heard so many talk and laugh and tell stories- like how my grandpa always hid the werthers, but we always knew… or how many times we got grandma to the point of “Jesus Mary and Joseph give me strength”… so when those members passed it hurt but it was like a celebration of their life and large legacy.

Fast Forward to today… and sharing Madeline and celebrating her- being loud and squishing people into my kitchen to feed them Happy (which is not real… it just adds 40 pounds on…). It make total sense to me why I am the way I am and why I greive the way I do. It is totally different than my Ex husband and his family. I really see this as a product of what I grew up in. We each have our own background and customs with death and is a part of the legacy, tradtitions and customs like Life. Each of us carries our way to share, honor, cherish and carry our child’s death and legacy- loud, quiet, huge gifts, small blessings, big celebrations or small traditions are different for each of us. Imagine the differences in this room, with the way each of us carries this…

In this crazy big mountain of loss and pain I have learned to accept support and love from those around me. There is a gift in allowing others to support us, and just saying thank you. SO many times I had no more in me… no more energy to cook or clean. I had no more ability to enjoy and entertain my girls… I let my herd support me. I needed them and they needed to know they were there. Have you found yourself allowing people to carry you more? I know for our family it was pivotal in getting to this very spot… and I am sure to the next spot and the one after that…

Another lesson, or maybe a gift in this is loving me, for just me. I can only be sooo much, being Madeline, Amelia and Lucy’s mom has been my favorite part of me ever. I have to accept that I am the best me for that moment, even if it is not the me I love to see. At the end of the day, I am still here and I have done some of what I meant to that day. I am still living and breathing and here. In the moments I fail I try to remember that I am trying, the best I can in that moments with the tools I have to get by and hopefully build me better and stronger…

You know what else I have come to know as truth? My madeline was made just for me and our family and this life. I know that we were the best people for her, that she shaped us. I know in me that I will see her again someday, and for now I spend my days loving my chickets and living and building me- I know someday I will be with her.

When Madeline passed I had a supreme understanding of where she is, that she is ok and that God is intertwined in all the details. I see that there are no coincidences, no happenstance. That He takes care of us. I know not everyone has a strengthened faith, but for me I felt a much bigger understanding. I felt a new piece of me in the lost part… that just KNEW she was more than ok and I guess home now.

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Sometimes what gets us through is a need for connections, I know some do not… but I and so many do. I needed to see those that survived and were still alive. I remember needing to know others that had gotten through this, or even just woke up and gotten out of bed… maybe moved through the day without their children. I NEEDED to see others who lived and breathed and walked this path and still could love life and feel their missing ones- and watch their other children grow. I was scared for the future, that I could never move…

I thought it was stupid and pointless that world kept spinning without Madeline- I could not understand how it could keep spinning. My world had stopped and broken, how on earth and others keep moving and living and working and laughing- When Madeline wasn’t here anymore?

Realizing that the bus would still drive by without my daughter and it was still a day in the world- was a HUGE movement for me. It still hurts… I will still have moments of wondering while at playdates or around kids that were friends with Madeline- “how did we get here?” I wonder how it is possible that the world spins, children grow and kids teeth fall out… I guess at this point Madeline would probably have braces and crushes… and my broken heart feels more broken for those missing milestones.

All of this wondering is more fleeting and less common now-a-days…. No my brain and heart and soul know that the world DOES go on, for me, my girls and all others.

I remember the moments I met some of the parents who lost their children to cancer over the past years. Some were recent- like months before Madeline- others were back in 1998. I needed to see and meet those who had JUST lost their children, the raw and fresh loss was necessary. I also neeed to connect to those parents who lost their children a time ago and see that they smile and laugh and cry and LIVE… not just a fake life but a real one. I had to see that there was life beyond this… we are supposed to love and bring our angels along…

I know in my journey connecting has saved me on many occasions. My friend Gina and her daughter Catie, who left this world in 1998, showed me that I will never forget Madeline- or not carry her in this journey. That connection and bond to her saved me and helped me so many times… Seeing others stand and move and not just live in a dark hole- I could not imagine carrying Madeline in a world of dark hole. It has made all the difference.

Each of us finds our way in this… with the tools and ways that we will. Expressing our child and our journeys, sharing our story and our adventures and growth are great tools in this.   In fact we use so many tools to get though all of the stuff in our lives- good and bad. I know since Madeline passed I have grown in the ways that I can express myself- with my words and feelings… and the modes of sharing.

Madeline got me back to writing… in 3rd grade my teacher told me not to stop writing, I remember her loving to read my words. I wrote and wrote when I needed through school, loving big essays and term papers, I was that weird girl. Then I grew and got married and had my girls… life got crazy. It always does. After Madeline passed I started writing again. I had been brainstorming thoughts and ideas for a blog when my girls were babies things like Potty Training vs Marathon training. I never started that blog. After Madeline I realized that I really connected to parenting with grief. So I started a blog, Climbing up the polka dot tree. Writing has been an amazing way for me to compose my feelings and thoughts. I think best in words I write. I have found great healing in putting my words out there, in taking the time I needed to think and feel. It is my way. I see so many other parents who have traveled this journey use their words to remember, to sort and to help them build themselves stronger, more self aware and sharing their children and experiences to make those key connections.

Madeline forces me to step out of my comfort zone all.of.the.time. I swear she likes to make me nervous and keeps me doing my job. The fact that I am standing here, terribly nervous to mess up and drop a bunch of um’s in… is a huge step. Speaking has become a special and terrifying way to express my journey and find connections. I am here today… I often wonder if our kiddos have pushed all of us… to be here today in a room full of others, to talk about the experiences and the journey… all of those things take extra bold parts of us. I know that it is her pushing me to get a little scared, to put myself out there and to share her. I know it helps me when I think of all the words and stories I have gotten to share with so many about Mads, life, grief all that jazz… it is crazy to me speaking could ever have been a great outlet in this pile of grief.

Sharing and expressing our lovelies and their stories is like a tool through this, it’s a key to remembering and ensuring others remember as well. Sharing in all the ways we can- speaking, writing, support groups, counselling… whatever it is saying those words and stories brings our children along.

In this sharing and bringing our kiddos along… I always remember that I know my Madeline so well. We all know our lovelies. How could they be forgotten… how could we not share them in a way that we need. We are all different, that is the best part. Our children were all different. I love sharing Madeline and directly supporting families, that is my niche. I love seeing others honor their children in different ways, ways that help them move and live and breathe. For me writing and speaking are natural for me, for others quiet and peaceful are the best way to go. For each of us I find it important to know that we need to do it all our way, never let someone make you feel like your way isn’t the way- I tell everyone to move and live and breathe and honor in the best way for you and your child.

Today I am so honored to be here, to be in this space… to know that we all ‘get it’. I hate that we ‘get it’. To stand here with you all, to have that extra label on my life resume, to know that we are not alone, to know that our child needs to be brought and carried into the future- I want my children to carry her, I want her friends to carry her. I am sure you are all in this spot… I want you all to know that this bond is strong, this bond between us. I know for me that Madeline wants me to say her name and share her story… I would love you all to share your story- with me, with others and with your future people. Our children are amazing. They are the best pieces of us, I know that God has got Madeline, I would take her back in a second, but instead I must carry her and wake up on days I don’t want to move and let her carry me. I must be the ME that she would want to be with, be the mom to my girls that she loved… I must bring her with me when I try new things- things she can never try… I must live for her.

Today and this weekend is made to feel HOPE, hope is one of my most favorite 4 letter words, I have a few others but HOPE is so important in this. I am excited to attend some of this programs this weekend and leave this experience with a supreme feeling of bring surrounded and grounded in these upcoming weeks. Hope is feeling safe, loved, carried… blessed in the broken, surviving and living even with the weight of this loss and grief. Just after Madeline passed away my cousin sent me a gift, a beautiful glass jar filled with rolled up papers. Each little rolled up paper had quotes and verses for moments I needed something… I opened many and connected to the words. I placed these little handwritten cards where I would see them when I needed them- my mirror, inside the door of my kitchen cabinets. I look at my favorite quote all.the.time. “I find hope in the darkest of days and focus in the brightest”. I try to use my good and bright days to find focus to lean on hope during those dark and hard times, almost set up a reserve for the times I can not see the light.

Today I am thankful for this, for this chance to share my lessons and journey, my hope and my Madeline. I hope we all leave with a renewed sense of hope and connection, more strength to keep moving and living and smiling and crying… all the parts of this. I love to talk and chat, but I want to give you guys a chance to talk or ask for the next little bit.