Importance of Parenting.

Something profound happened recently and I have been thinking about it a lot. It was one of those conversations that you don’t expect for the last person you would expect to tell you or talk to you. While sitting in the ballroom, after just finishing our Golf Classic’s dinner reception and speakers… I was approached by one of Matthew’s bosses. He sat near me and I introduced him to my father. He told me he wanted to tell me something that he has carried for a long time. What he told me reminded me of my worth as a mom and woman, more than I could have imagined.

For many years I was a Stay at Home mom to my girls. It was a hard choice, but I don’t think Matthew or I really saw as a choice when Madeline joined us. We live far from our families, we both worked a lot of hours and neither of us really knew people well enough to entrust them with our newest Musto. I stayed home and we grew our family quickly- Madeline, Amelia and Lucy in less than 3 years (doesn’t that deserve a medal???). I left the social working world, where I had many friends and activities to care for the girls. I was very lonely in the beginning. It was really just Madeline, Sparky and I… for me it was the hardest part- the lonely. Over time I made new friends and joined a mom’s group. I found activities for the girls and I, as well as friends who connected with me on the ‘mom’ level. We started to rock the stay at home part, I feel like they were my little team, my little set. There were MANY challenging days, days where I got to the end of the day and felt like I had been kicked, puked on and feed off of for the entire day. There were days that felt like all I did was prep food, wash up… prep food and wash up ALL.DAY.LONG. There were days that my only conversations were with people who wanted to tell me “No” or throw things. There were days where I could not wait for the door to open, for another adult to take the reins and to run away. Other days were such a blessing. I see it now, now that one of my daughters is no longer here. I see the miracle in the mundane. I saw them grow, I saw them at their worst and best (as they saw me) and I loved them anyway. When it came down to writing a letter to Madeline’s Kindergarten teacher I knew so much about her that it was easy. I saw all the sick days, all the playground moments, I saw those birthday’s celebrated before daddy could get home. I loved pick up from preschool and lunch with my girls. I am very lucky to have had that.

There was another side to being a SAHM that was very hard for me. My whole life I had these grand ideas that I would be successful. I worked my butt off in school and college. I loved science and writing papers, I loved doing work. I enjoyed working and learning new things, things I saw as important. I felt like I was a growing professional, even though I worked in a clean room and wore yoga pants to work. I felt like a grown up. I was comfortable in most situations because I knew I had something smart to say. Once I stayed home with my girls I was pretty cut off from that world. I still saw my friends and we met up, I attended Matt’s work functions and I hung out with some friends regularly that had fancy grow up jobs. I always felt that they were smarter and more sophisticated than me, that I was inferior. I didn’t go out learning new things, travel for business, enjoy happy hours or wear nice clothes. I spent all.friggin.day talking to little people, teaching them to go potty and sending them to the naughty tile when they were unkind. I felt unaccomplished and stupid around these people. I know now that it was a huge insecurity for me, something I have worked very hard on- my worth. I also realize there were many pokes and digs about working on my vocabulary or exercising my brain (because you know it is a muscle too).

What I didn’t see is the other side of the work I was doing…

Several years ago now, I went with Matthew to his work Christmas party. I thought all day about my outfit- a black textured mini skirt, a red tank and black cardigan… with tights and high hot heels. I worked really hard to look pretty and professional. I went in there rocking that goal, but failing on the courage front. I walked into a room of people that I felt inferior too, I felt insecure and not smart. I knew that they were all professionals, engineers and project managers. I felt small and unimportant. I see now and I saw then that there were people who purposefully treated me that way as well. I almost left several times, and if you know me I love social scenes. I remember going into the bathroom and sometime after finding this woman and we talked most of the night away. I remember sitting with a coworker of Matthew’s who is funny and needed a place to feel welcome too. We talked and drank a little wine and ate rolls…

Fast forward to a few weeks ago…

Matthew’s boss sat next to me at the Golf Classic, as it wound down. He told me he had to tell me something. After I had introduced him to my dad he told me he knew I wouldn’t remember but… a few years back at the Christmas Party he and his wife came. She came in from Syracuse to be there and she felt insecure, small and not really smart like all of those engineers and project managers. She and I connected and chatted most of the evening and connected on the SAHM level. We both felt that our work wasn’t like the work the people in that room did, that were just hang out with littles. I remember not feeling so alone when we sat together. I look back now and wish I could have told us we were silly to feel that way… but it took this long to learn that and know it.

Soon after that party Madeline was diagnosed and very quickly headed out to heaven. He told his wife that it was my daughter, the Erin she sat with and talked about parenting and mom-hood with. He told me they were both very upset and sad. I said thank you. I confessed that I had felt that way, that I felt inferior… like my work didn’t matter. He told me he knows that his wife was doing the BIG work. He knew that she was doing the important work and he knew it was hard. He sounded like he loved and admired his wife. It was refreshing.

What I was reminded of in those moments is the BIG work we do as parents. I was reminded to that time, when I felt insecure and small in a group of people who would have rather not talked engineering and projects. I was reminded of the important work I was and am doing…

For I have girls who laugh and live and cry and breathe and grow and give and share and build and get mad… I have really good people. I have these girls who not only have great potty going skills… but they love people. I have girls who know boundaries and naughty tiles are for the birds… who fill buckets more than they empty (we are all human). In all that important parenting work, whether I had been a working momma or Stay-at-home the work is important. Every lesson and smile, every broken and fixed, every little deal or big… was important work.

My only wish is that I had felt and seen and known it before. Every moment is not treasure to me, but it is all important. Every hard day will have a good one to come… so chin up parents- be kind to you and secure in your importance.

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Be Kind to YOU.

We can tell the world to be kind to others, tell them that there is good and kind in all of us. We can tell our kids to be the ones to stand up and shine kind. We can tell the neighbor kids to play kindly and share. I think, for the most part, we can all be very kind to others if we choose to. I know we don’t always choose to…

What about being kind to ourselves? Why is it sooooo much harder to be kind to ourselves? What is in us that makes us so much harder on the person we see in the mirror? I know some of it lies in self-worth and confidence and potentially so much more. I am sure there are deep seated reasons in why we are so stinking terrible to ourselves. I don’t mean this only in the person we see in the mirror, we are hard on her/him. I am talking about being mean to all parts of us. We overthink our parenting, our friendships, our looks, our weight, our choices, our words- ALL.OF.IT. We quickly put ourselves down and beat ourselves up for everything. Why must we do this to the person we were made to be?

I am super guilty of this. I am the first to see myself as a failure, as a mom who missed signing my kiddos up for things on time. I miss the bus- I really am the reason we miss the bus. I yell when we are late or stressed- hence making it all worse. I try as.hard.as.I.can to get homework and reading into the night… but we fail. We show up for dance, on a Monday, 2 weeks before the real Monday it starts (we know we can do it on time now). I mix up a lot of things.

Maybe… just maybe I am only listing all that I failed at. What about… all that I did right, right down to the little things. Why must I see the crap and forget the good? What is it in us that does this? It could be human nature, but I think it is human nurture. We are told and taught and shown that we are not enough. We are not enough in so many areas of our lives; though it is what we think, hear, grow up knowing. We are so extraordinary and regular and broken- built to be humans. Humans created to be what we are- broken and extraordinary and real and honest and regular and whole.

What about the part of us that keeps us from seeing us as a success in human hood? I am tired. I am mad at me for being tired. I am a Mom to 2 awesome and growing girls and one that happens to be an angel. I am a President to a Foundation that works hard to create best day ever’s, awareness and support. I am an advocate for families. I work in Special Ed with awesome little friends who need a little more. I write and I speak. I try to eat well, to work out, to run and enjoy that time. I fall asleep making a to-do list, trying to fit in time for me… to enjoy time with my Mr. Rick, to get a pedicure… heck to get a haircut. I try. I end many days seeing me failing at something… never letting myself see the lighter side (I woke up, I worked, I smiled, I ran, I chased, I made it… albeit with grown out hair and rough feet).

I work with families who are going through crazy. I have friends who have seen the worst. Our piles of crazy and our ‘the worsts’ are not to be compared- only survived. I say this because so many look at me as worst-case-scenario, and I honestly like life very much. I love it even in my big pile of loss and heartbreak. We all are dealt a different pile, at any one time we could be on a high or hanging with a hard time. We don’t get to pick. We do get to pick how we handle…

One mom I love is entering the world of Pediatric Palliative Care. Imagine. That lovely momma beats herself up for so much. I talk to her and she is struggling with bills and stress and the house. I see her and I see her doing the best with what she has. She wonders if she’s made mistakes and what she should be taking care of- I assure her that her lovely teen daughter who is preparing her for her death is the.most.important.person.to.care.for. I told her that the time she has with her daughters, the time her daughters have together will be the most important thing she can do for this piece of her life. There will be another time the she will be in a place that she doesn’t need to ask for support. Someday she will be gifting another support in a way she knows how…

I heard from a friend today about her momma, who was injured and her recovery will be long. We talked about maintaining life next to this hard… kids, sports, work, recovery and care for parents. The first thing I said was “Be kind to yourself”… let yourself just get by. This is the time to just move forward… to accept meals from friends and not count calories, to just do what you need and crash, to maybe miss a few things as a parent. We are only human and God uses our hard to create beautiful things, He never wastes pain. So just live and know that there will be a time that the craziness fits in. He works that way.

I have friends going through financial hardship, trying to be okay with their kids getting less. I have friends going through divorces trying to even it out and be the best parent they can even in the turmoil. I have friends who have VERY sick children and their marriages are suffering or their jobs. I have people in my life who just found out that their child is sick… all on different parts of this journey we call life. Sometimes it is high, sometimes it is low. Do the best with the tools you have.

Be kind to yourself. I know, I sound all bossy. I mean it though. I mean to love yourself always and anyway… because life is really freakin’ hard. Life is hard on we humans, hard on our hearts and bodies, our spirits. I don’t wish you to have an easy life, or less piles… I wish for you to prepare for those piles, the good and the bad… and do the best with the tools you have. I think in these moments of Forrest Gump… when I was tired I slept, when I was hungry I ate. Do what you can with what you have in those moments, sometimes it means we nap or eat a quick dinner or miss an open house or forget a dance class. You are human. I am human. We are doing the best we can, love yourself anyway. Remind me, I will remind you.

Life is kind, hard, lovely, terrible, messy, perfect, broken and awesome all in one day, heck all in one moment. Try to love the you that you are right now, with the pile you have in this moment. So when you are busy caring for your momma after a few strokes, or stressing about finances… or entering your lovely into Hospice care- be kind. Let yourself be a human who is just using what they have… getting by, just surviving this part.

Where have all the parents gone?

I remember my sister telling a story many years ago, a story that has resonated in my soul ever since. I am one of 5 kids, you heard it right, 5 kids. My parents were very resourceful with money and our needs, we rocked leftovers, ate dinner out ONLY once a year and hand-me-downs were a staple. I think money was tight but I never really felt it. We had to work for extras like fancy sneakers or Gap jeans. I never felt different, at least because of money or things, in school; I had all I needed and more.

On one occasion my older sister wore to school a sweater that my mom had found for her with an ‘R’ on it at a rummage sale. It was a really nice sweater, and my sister felt special for having a shirt with her initial on it. She wore it proudly to school, not caring that it was a second hand sweater. When she got to school that all changed, kids picked on her because they knew it wasn’t hers. They picked at her for having a second hand sweater and not having money. The old owner of that sweater, R, came to the rescue and told those kids that she had given my sister the shirt. She stood up for my sister and I know my sister will never forget it, but neither will I.

It reminds me of the kind of kids I want to raise. I don’t want the ones who pick, or care about second hand things or money or cool stuff. I want the builders, the defenders… I want the ones who rock what they got and don’t work to be just.like.everyone.else. I will not, can not give into the rest of those kids and parents. In fact I want my girls and your kiddos to not give in to what others want and need (or think they need).

I was talking to a friend last week about the first couple days of 5th grade for their kiddo. Their child came home from school the first day wanting a phone, begging for one because everyone else has one. That 5th grader had a shiny new IPhone within 24 hours of that begging- text, phone calls and data. I looked at that situation and thought about how the parenting had been removed from that big decision. So many parents are giving into these decisions because of other parents and children just really wanting something… not because it is the right thing for that family. Where did parenting go????

Why are we making choices based on other parent’s choices, not whether it is good for our home and family? When did we become a bunch of parents who blindly give into important things because our kids want something. Kids are kids, we are the ones to guide them- to say yes to them, to say no to them… to not care if it hurts their feelings because it is our job.

I am not looking at the 5th grader getting a phone as the problem really, although that is not the way Matthew and I parent. I see the problem as a parent thinking it is their job to help their child ‘keep up with the Jones’ . When did we become appeasers instead of parents? When did it matter if our kids got to do EVERYTHING they wanted even if it is out of budget, or if they wanted new gear and sneakers because of everyone else, or maybe to exceed everyone else? Where are the defenders and the builders?

Talking to a couple moms one day and one of them asked the other if their daughter could stay the night. That mother replied “Of course! I am soooo not one of those moms”… and I sat there thinking I wonder if she knows I am. I am totally one of those moms. I say no to sleepovers right now, unless I really know you and your family and your home. You can pick on me for it, you can tell me I am wrong… but it is my job to trust my gut with my family- and it is yours to take care of yours. I tell Amelia don’t take it personally let your friends know I am the meanest mom ever- I can take it. I don’t need any more friends and if those girls want to be mad they can be mad at me. That is parenting.

Parenting is being the one strong enough to take the junk, to save your child from situations they don’t understand. Parenting is creating a child who doesn’t grow to do everything like everyone else… who gets a new car because they want to invest in not because someone picked on their old one. I want to raise girls who say ‘No’ when they don’t want to do something, who trust their belly feelings, who see something cool and want it because they think it is cool. I want the ones who defend girls or boys who are different or wearing a second hand sweater, because let’s be honest my girls have some awesome hand-me-downs from some fantastic girls and my nephew. I love their different and genuine. I don’t ever want them to try to become someone else’s idea of them. I also remind them that I waited a LONG time to be Mom, to get to be ‘the boss’ and to grow my skin thick enough to do this important work of parenting. I love their choices but I love that it is my choice as to whether their choice counts- otherwise Amelia would be rockin’ a mini skirt or Lucy would bring her baseball bat to school.

Parenting our own children is a really important job, like a really, really important job. I feel like it is time we build ourselves stronger so we can create builders and thinkers and defenders… the world is going to need them. There are only so many Jones’ to keep up with… take back that parenting. Let’s build the ones who love up on friends with special needs, eat lunch with ones who don’t have much, defend the one with a lisp, stand up for the one who had an accident, run around with the lovely with no friends and welcome the new boy on his first day of school…. Let’s get this done.

Running my Rat Race…

Running my Rat Race…

As I sit tonight for like the first time (minus the tiny little car I drove to and from Boston) I am reflecting… on all the running that is in my life now.

Only a few years ago my running looked SOOOO different. I ran races and long runs, many runs with friends. I ran to the grocery store and to preschool pickup. I ran errands. I ran into friends out and about, sometimes planned and sometimes a surprise. I ran a house- and in doing that created a home. I ran after little ladies with little, fast and naughty legs. I ran into a lot of baby gates and young children toys… I ran a lot.

Today the running looks different. I often miss the kind of running where I move (albeit slowly) and lift my feet up and down on the pavement. I am trying ever so hard to get more of this running in my day (night, weekends… pretty much always). I of course still run to the grocery store for the norms… which includes less of the lunchy foods and different foods for snack. I still run errands and errands and errands… only now they often include grabbing things for events and other families. Now-a-days I run events?!!? I know, it impresses me every.single.day that people trust me to remember important details and create events that are made to raise funds or celebrate a child. I run a house, but not to the standards I once did, and most of the time it feels like a home. I run to my girls school to pick up or drop off. I run around school working and trying to keep track of my students and my tasks… I really really hate trying to run the copier. It is funny how the same task looks so freakin’ different in such a short time…

I wonder what this world that is my Rat Race will look like in 5 or 12 or 37 years… let’s hope I am still running and running and enjoying.

The constant state of running is definitely heightened in September… I mean it is an awesome month for many reasons. It is the end of summer and the freedom it brings, it is the start of school and schedules and new socks and undies. September is a huge month for events for Maddie’s Mark and other groups. It is the month set aside to raise awareness and knowledge for Childhood Cancer… so I work to spread Gold anywhere I can. September this year has some amazing opportunities for me, which I am excited about. I keep praying that God will work the next thing into my rat race soon… maybe a book or some speaking engagements.

This past weekend was one of those live the rat race second by second. Run and run and run… until tonight comes and I can plop my bottom in this Lazyboy and think it out. Maddie’s Mark had the 5th Annual 5k and Fall Festival… to just say it was amazing would be an understatement. If you were there you felt the energy… if you weren’t I will describe it. Imagine standing surrounded by 400+ people all hearing your words about Madeline and Sparky (because my dog had to make a scene while I was talking…). Imagine all of those people were happy and full of energy, preparing to run for a cause they may already know or are just hearing about. So- picture 400+ people happy and positive and excited and knowing Madeline in some way or another… surrounding you as you greeted them, thanked them and stood with them. It is a powerful and positive energy builder… I felt like it was God sending some extra for me to get through the rat race this month. The rat race of awareness and sharing, of planning a huge best day ever, of the Golf Classic and speaking work. He gifted me with a blast of positive energy and clarity that this is the way…

I couldn’t let go of the smile. Watching people who had set goals and push was awesome. The winner for the first time was a STRONG and fast female… she thanked me! I was standing there hugging her thinking about how I am so grateful she came, she ran and she conquered. To stand and give out medals with my daughter at the finish line… it is the best. To see a person finish who had never done a 5k is the best. I love putting medals on kids who rock it and run… it is awesome. I was so tired at the end, but I got in that tiny car and drove to Boston and felt this inside energy. I was tired still… but it was different.

I know that the energy from that day was a gift from The Big Guy and so many of our herd to keep us all going… to keep the Go Gold moving, to create Best Day Ever’s for families and to use our voices to do good work.

I am sitting here, resting my vocal chords. I know it would surprise many of you, but I have lost a fair amount of my voice. I feel like it is a little God joke that the day after my poor deep and raspy voice is injured I have a radio interview with a really lovely lady on the Catholic Radio station. I know the energy from the weekend is carrying me forward and keeping me strong… but could you keep my vocal chords in your prayers tonight- and heck while you’re at it ask The Big Guy what my next direction is…

Scars are healing…

Sitting on a school bus headed up to Adirondack Animal Land last year I got to squash in with some great students and listen to the important chatter of a 4 year old. This particular bus ride I will never forget. I sat next to one of my favorite little students, there was something about her. I loved her sense of boldness- she actually told me what she wanted. Her eyes had that little grow up sparkle to them and her voice was very quiet. Sitting with her she showed me her scar, her heart shaped scar that perfectly healed after her port removal. She was so proud of that heart. She told me about the medications she takes and how terrible they taste. She told me about some of her experiences and I told her she was very brave and I was really impressed with her strength. I sat and let her tell me, this little 4 almost 5 year old, about her tumor and port and meds. It was a profound moment that reminded me about this world of tumors and cancer and chemo and ports and radiation and scans. Imagine sitting with a 4 year old to hear that conversation, just as normal to her as talking about her summer vacation and brothers baseball games. This is her normal.

scars9

Scars. Scars are a sign of pain and healing. To have a scar, one must have experienced a painful event- one that will add a story to their life. I have lots of scars from skinned knees, stitches- some have great stories some are silly- all show a pain that healed. I guess scars should be celebrated, kind of recognizing the overcoming of the painful event that healed. A scar is a different piece of us- along with it’s story it looks and feels different than the rest of our skin. My dad used to say scars add patina- they add to our story, what other choice does one have? To live with that scar and carry it on as a part of us… even if it broke us.

I am so often surrounded by children who have scars from the surgeries and treatments they underwent while fighting cancer cells. I see children smile days after having a resection surgery with an incision from the front of their belly to their back… it is their normal. I see children who know bigger pain than I could have endured- chemo drugs that are killing them, radiation that hurts and burns every.single.time. I see children have to relearn to walk- standing in pain and being pushed to work hard through the hurt. All the while those kids are healing and seeing these new scars, visible and different, building it into their story- their normal. I see ports and belly scars in swimming pictures. I know there will come times that those kiddos are embarrassed that they look different but I see brave, bold, strong and special in those scars. I hate that they experienced that pain, I hate that they have a pile of story that shows on their body that they can’t control… but as we all know we don’t get to pick the hard stuff in this life.

Scars are normal for these kids, they are lucky to have scars. It hurts to know that there are many scars and cancer stories that are no longer here to wear the scars and start school, go to prom or swim… to grow. Cancer has taken so many of our kids, it has left lasting scars on MANY more. I love that little heart scar on my friends upper chest, though I know it was a reminder of pain for her it was also a symbol of hope. That scar is a visible reminder of that extra hard journey she and her family went through. That scar is her normal, scans and radiation… terrible tasting meds. Her normal, while she now rocks her first day of first grade is different than most. She has an extraordinary story… to live and carry, to show and share… or to reflect on as she grows with her little heart scar <3.

Other scars show the story of a resection surgery… the trust a mom puts into a doctor who will open your child from belly to back and remove tumors, to scrape those tumors off dangerous blood vessels and nerves… to find it all and stitch your child back up so that the scar can become the normal- to prepare for the scans that come with that scar. Imagine waking up that morning and kissing your lovely as they are opened up and praying that the surgeon gets it all and your lovely gets to have a scar… that scar is a testament to a time of pain, extreme pain and fear and faith. This is part of it… those moms and dads pray for a scar, a testament to that day being successful. Those parents know that some don’t get to carry the scar in their story and normal… some don’t get a long enough journey…

Seeing the scar from a port makes me smile… knowing that this little one got to bring home that port and store it on their shelf in a little biohazard container. They can look at the life changing device that make accessing their veins and administering poison less painful. They can see and feel the scar- and look at what made that scar and that part of their story. I smile because I know those kiddos are SOOO glad that their port is gone, it is a huge step in getting into their new normal of cancer journey mixed with the rest of the world. I love seeing the kids I work with and follow wake up from port removal surgery and be rid of the last big tie to the hospital- hopefully for a long time. It is inspiring to see…

So, you see, the scars are a symbol of healing. Scars are a symbol of life moving forward alongside the story that we have lived. The story is full of pain, but in time the pain lessens and normal is different… a scar shares the pain but honors the right now. I see these children in their lives be bold and different, they are driven and they are compassionate. They have felt extreme pain and they have continued to grow, they are very aware of the friends they have lost, the friends who didn’t get to have the scars only the pain. These kids are a different kind of real and genuine- their normal is the product of the fight of their life and all the scars that the fight left…

 

September is for GOLD.

Once upon a time I was a mom to three beautiful girls. I was tired and happy and unsure if I was doing anything right. I was chasing a 2 year old, nursing a little one and driving one lady to preschool. In the chaos of that time, those girls kept growing… and growing until one day I had my little kindergartener. Life was good. I know cranky mommy came out and crazy girls made for exhausting days but at the end of every day I plopped on the couch with the divine knowledge that we made it. We made it to bedtime and everyone was still alive- job.well.done.

madeline gold

Life was good, then life was broken. In an instant our world changed. Sitting, or maybe we were standing in a room surrounded by beeping machines and Neurosurgeons we were told that the little area from the CT scan, the reason for the late night MRI… was the worst case scenario. They asked if we wanted to see it, I couldn’t. Madeline was diagnosed at that moment with DIPG, Diffuse Intrinsic Pontine Glioma, a rare and inoperable brainstem tumor that had spider webbed through her brainstem and was stealing her basic functions. We then met our new doctor- Dr. Porter. She was not only the most amazing Pediatric Oncologist but she headed the Journeys Program. We were aligned with the best person to help our daughter live and enjoy- and die.

Your child has cancer. Madeline was dying. My dimpled kindergartener, who loved her sisters BIG and was the most compassionate child was dying. Madeline’s infectious giggle and her raspy frog voice, her amazing hazel eyes… her little hands and her dreamy hair would be gone from this earth soon. Soon there would be no fresh memories or artwork for me to hang. Madeline Elizabeth Musto was preparing us for her death…

We were gifted 5 days. We didn’t get the normal cancer journey- clinic, treatments, chemo, radiation and steroids. We were gifted 5 days that were spent the way we loved- together. We didn’t know that it would only be 5 days, those things we don’t get to pick. Madeline’s tumor ruptured and took her faster than any could imagine. Only 5 days to love up on her and figure out the next step…

DIPG stole Madeline’s last breath, her last blink and her last heartbeat. Imagine laying with your daughter and feeling her skin turn cold, hearing her last heartbeats. I miss her heartbeats. Imagine laying with your daughters as they sang their sister to heaven… songs like ‘You are My Sunshine’ and ‘The ABC song’. As I lay there, on that hospital bed, trying to memorize her before she was gone. I miss her…

In a moment my world broke, I have a hole in my soul that I can not fix or fill or get rid of- it is a part of me. My girls have a hole to live on with… to carry her with them. DIPG stole my Madeline, my Mads… my first lovely.

Life was good, now it is gold. Life is GOLD. I spend most everyday sharing, supporting, carrying, spreading awareness and working to change this. There are no days in my life that the children who are fighting, have fought and have joined Madeline in heaven are not at the front of my thoughts. Those amazing kiddos who spend days at the hospital, while we head to the beach. Those kids who rock their ports and bald heads, steroid cheeks and scars of surgeries… who wake up and get better or don’t. That’s the thing, it is a roulette table, there is no rhyme or reason in who lives and who dies. Who makes the 5 year mark and who doesn’t… it isn’t fair at all.

Life isn’t fair, we all know that. Childhood Cancer does not judge, discriminate or care about your world. Childhood Cancer is probably the only one true thing that truly doesn’t care about your race, gender, orientation, socioeconomic status… whatever… Childhood Cancer doesn’t care if you a baby or a teen, a poor person or a rich one, an Irish Catholic child or a Muslim one… black, white, pink, blue… whatever. Every single one of us has the roulette red or black, 17 or 13, odd or even… chance. How do you like them odds????

Your child has as much a chance to die of cancer as mine. If your one of the lucky ones who lives your family and life is burdened with scanxiety (anxiety and fear every.single.scan that cancer returned)… your body will carry the lasting impact of those treatments. For the chemo you received when you were 3 and 6 your bones will break down and your heart will be more likely to fail. Secondary cancers are common in adulthood. Radiation you received when you were tiny might make it impossible for you as an adult to have a baby… a life event so many of us look forward to. The poisons we heal with have not been improved in 30 years. Our children receive adult doses, because there is not enough study work done to know better.

Life was good. Life is broken. I used to live in a world where I was blissfully unaware of this world of Childhood Cancer, I am sure you did as well. I used to put my 3 girls to bed and stand looking at those sleeping chicks and feel content and proud. I would sit and reflect on the craziness of the day, maybe the funny things that happened, maybe parenting moments I wanted to improve- but I knew I succeeded because at the end of the day we all made it to bed alive. That isn’t the case anymore…

You are aware.   You must know that your family is at risk for this disease to break it as well. This needs to change and change needs to happen here and now. Use your skills to change this, help fund research, talk about it… tell the stories of these kids and help others KNOW the odds and the lack of funding. Talk to your politician friends… seriously. If you own a business GO GOLD… start conversations. If you are a parent- love your child and their odds enough to do this. It starts small… nothing grand… a PTO bubblegum day gets those parents talking (25 cents to chew gum for one day)- even if it is to prove they are better parents for not allowing gum chewing. If you are writer use your tools to share this, or if you are a TV personality use your forum to share this. I am not telling you what to do, only sharing what could change this. Little things multiply and become BIG things… be a part of a little thing. I would be forever grateful and I know so many that would as well.

Go GOLD. Change your profile picture, but do more. Talk. Share. Spread awareness. Do it for Madeline, Myles, Devon, Tyler, Kalina, Onja Rose, Ryan, Catie, Ben, Nick, Luke, RJ, Julian, Ila Jean, Travis, Elijah, Will, Jennifer, Gabby, Talia… that is only a few of those that are with Madeline. Share this. Engage. Change this with the tools you have…