Purpose in everything…

Purpose is everywhere. We are gifted our lives- hard, sad, mad, glad, broken, beautiful and confusing for a purpose. I tell people over and over we all have our piles, piles of hard and hurt and easy and joyful and crappy and unfair. We all have our own unique piles of challenges, blessings and lessons. There is great purpose in all of those. We do not, I repeat, we do not get to choose the pile that we get to climb or trudge through or look at… it is determined for us. I also know that our own challenges and joy and pain and suffering are there for us to reflect on, be grateful for and to carry it all with us. Our experiences are purposeful.

Five years ago I thought the greatest purpose I had was to wipe butts or show my daughters adventures (PS great purpose). I was oblivious to the epidemic of Childhood Cancer. I was oblivious to the statistics, terrible funding and lack of care for the families going through it all. I didn’t know that there was a need, I didn’t know my life would be altered forever only a few months from now. I had no idea the true importance of a best day ever or using our big girl voices for change (big boy as well). Little did I know that a huge empty void in my heart would show me a great purpose, a niche. This niche has not filled my void, only made it less empty, if that makes sense. The hole missing Madeline will forever be the same size, it was cut from me on February 8, 2012. Healing will just form tender scar tissue around that hole, but it is there forever. I miss Madeline and the hole she left is part of me, it makes me me. Madeline’s loss serves as fuel to fill the niche of Best Day Ever’s and true change for Childhood Cancer and Pediatric Brain Tumors. My hole surrounded by tender scar tissue is the fuel to push me to fill the niche Madeline showed us.

The world is full of need. I speak often to tweens and young adults about service. I try to help them understand what service is and how something they see as little or unplanned is a big.freakin’.deal. I tell them to pay attention to their gifts that sharing their gift is the easiest service. I tell them also that service starts right near home, it starts with the unplanned and unthanked weeding of a neighbors garden, or delivering food to a person in need of company. Service might look small and menial but it is big and necessary. I reiterate that they will grow and become what they will become and to use their talents then too. Sing at fundraisers, do graphics work or printing for foundations, use your expertice in accounting for a person who needs it. We are meant to be all sorts of things, we are meant to share those skills with others. I have a great friend who is a Nuerosurgeon… he know his hands are a gift and it is his job to use them as just that. He was the key in getting Madeline the diagnosis and doctors she needed. Our skills are a gift to fill a niche…

Fast forward to today and recently…

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I have the great honor of having many amazing people I meet along this journey. An old colleague of Matthew and a family friend was diagnosed with cancer a while ago, it is stage 4. She quit work and has been an inspiration and positive source of energy since. I see her live, like really live, with her daughters. I see her share moments and quotes to remind us of her light. She knows her days are numbered, what the number is we never get to know. She has created this beautiful and very needed nonprofit that helps adults battling cancer enjoy a night out or an experience that takes away the present. A night out to forget the needles and doctors and fear… the stress and pain. She creates memories and experiences and fills the niche she saw in her pain and hurt that needed to be filled. She saw purpose and positive in the light of her hard. I see her purpose as a beautiful gift to a person who may feel alone and broken and depressed- a bit of light In the dark.

Way back in the day I had a job, you know the kind that you had to ask for days off and call in sick (I know, I know it has been a long time). A coworker from WAY back then has shared a few awesome pieces lately, of the niche they are filling. My friend and I had our kiddos that were the same age, Madeline and Skylar. I remember when Skylar was diagnosed with Autism. I understand very little about that back then. I had no idea the struggle and challenges of a parent with a child with special needs. I was pretty naïve and definitely didn’t understand or know the struggles. I see it now, as a niche to be filled. Educating parents with and without special needs children… finding great opportunities for our amazing special needs population. I think, or maybe I know, that the parents and families of children with special needs are different and have a different purpose. I see many creating businesses that teach skills and give fair wages and experiences to growing special needs people. I love that. I think when we see it we can know it is a need… and I love when parents and families fill that niche of creating a business to help your child and others children. It is an awesome purpose. Tonight my old friend from work, way back when, shared a video of her husband (a chef) and the organization he created ‘Hope for Hire’ that does just that.  This organization gives experience and skills that couldn’t otherwise be learned.  They filled a necessary niche in this.

Hope for Hire- FOX 10

It is beautiful when we look around and see our pile and our purpose. It is remarkable when we see that and start filling a niche that is missing some pieces. I know it shows the connections and threads between us, and honestly show me God’s way of taking care of us. He gifts us many beautiful experiences that may be laced with pain and hard… but in all of that is purpose and beauty and niche filling and pile climbing….

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We celebrate you, always.

We celebrate you always darling.

Always and forever, it is the only thing that I know for total and utter sureness for the future. Today is the slow down day, one that needed a nap. After a weekend like this one the brain needs time to rest and reflect, and this damn ankle needed a bit of extra ottoman time. Lucy and I did, let’s be honest Lucy watched talking dog movies, I cleaned and tried to get this house back in order. All the while thinking about you my dear… thinking about what a great weekend it was, how much you would have loved physically being here for your weekend. We celebrate you, yesterday and today and tomorrow…

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As we stood at Maddie’s Spot on her birthday surrounded by family and friends, kids running around and playing hide and seek; I reflected on Madeline. Right there in that spot, on her hill, I saw all the bits of her and her spirit in those who came. I saw compassion, relationships formed when we helped those families, an image of Madeline’s compassion. I saw tradition, Madeline loved tradition and family. Her last birthday party was spent with only her cousins and family, a bonfire and a homemade cake. Her cousins were her biggest gift. I know she loves the simple tradition of us celebrating at her Spot. I saw kindness, patience, forgiveness and positive energy. Madeline was there. I felt it.

I miss that little lady, a lady who would not be little at all anymore. Madeline will be forever 5 in my memories, but I see in her friends what 10 would look like. I see beauty starting to shine though the bits of awkward. I see naïve and positive still, girls the world hasn’t tainted yet (ps I hope they never get tainted). Sometimes, if I let myself go there, I can see a 10 year old Madeline, but I know she is forever only 5 and ½ years of a written book.

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Looking around her Spot that day, I saw all that she continues to do. That Madeline connects, cares and teaches so many, all.the.time.every.day. Her birthday was perfect, minus her 10 year old dimple and beautiful 10 year old self. Something, though, we can not change the situation we can only change how we get through it. This year we were blessed with a few of Madeline’s cousins and so many of her friends running, playing and being together with tons of love for her. It is so special. I told her friends that night about how Madeline’s 10th birthday deserves rainbow balloons. Madeline is my rainbow. She loved and drew rainbows all.of.the.time. Her birthday was her, balloons and happy at her spot, laced with sad and hard. We headed home for a BBQ, bonfire, hot tub time and fireworks (a lil project from Mr. Rick and his lil pile of boys). It was a perfect night. I know in my heart I was broken, but those Delorenzo boys and my family and friends held my broken together for that night. In a time that can be so dark and empty, they stepped in and brought light and laughter and memories. They filled a night that I needed full.

The lessons my darling, the lessons we have learned since you left… prove to me that you are not gone. Madeline, you teach and change. We have learned to carry and support better, to talk and share more, to love more closely to ‘always and anyways’… to live life better. We have all learned that life is not to be taken for granted, that life is meant to be lived- really LIVED. Your compassion, spirit, patience, love for family and smile are gifts in this. You are a gift, your legacy is a treasure. You are my most sacred story, you are the most sacred piece of me and your sisters. I wish you were here to eat a cupcake from Miss Sarah… I wish you got to hang with the Delorenzo boys, to jump and dance in the hot tub and to see those fireworks that were just.for.you… but alas my darling you were here, you sent the best set of boys and you had the best view of those fireworks. I love you Maddie Maddie Musto.

Sometimes we receive gifts that others could never understand the power in them. While celebrating Madeline’s birthday I received a video from an old friend. To see my daughter in a video someone else owns, to be brought back to that very memory in someone else’s perspective- is a gift. Enjoy this treasure. Madeline’s 4th Birthday- Madeline themed birthday complete with a pin the tail of Guinevere, polymer clay Madeline and Madeline cake toppers and friends galore.

We will celebrate you always Darling.

Heartbroken.

In the beginning I could only remember the moments she passed. I could only remember the feeling of sliding down the wall in a slump, after being asked about a DNR. I could clearly remember the hurting in my heart, the physical pain, as I told her to go that we would be ok. I could feel her cold skin, not like the skin I had felt for the years before. My brain would reenact the sound of her heart that night, much slower and almost mushy sounding… not like the times I had rested my head before. I would try to remember the sounds of her breathing that didn’t have clicks in it… but I couldn’t. I would go over and over those moments, it was like I couldn’t remember before. I feared that those memories had replaced all the good ones, the ones I wanted and needed to feel. I thought I would never ever get to remember the feeling of her hair when it wasn’t matted and different. In the beginning my brain had to go back over all of this so I knew it was real. For a long time this reel went through my brain over and over and over… until I knew…

I remember still every detail of that night and morning… imagine your daughters singing their sister to heaven. Imagine leaving your daughter with nurses and driving away with an empty car seat and a broken family. Imagine sitting with your daughter for the last time… wishing you could feel her warmth again and see her smile, but knowing that her warmth and smile were gone.

I let myself remember it all this morning, I let those feelings of her cold skin and singing ‘You are my sunshine’ to her. I let myself see Amelia and Lucy singing the ABC’s and the pain in Amelia’s face. I let myself relive sliding down the hall thinking to myself ‘these hospital people asked about a DNR, don’t they know Madeline isn’t ready, she was just diagnosed… she’s not dying’. I let my heart feel that supreme empty and broken it felt when our car pulled away from the Emergency Room doors with no Madeline. I left there feeling like I wasn’t a good mom, lacking one of my girls… then I knew she was not my responsibility now she is gone. It felt like I physically lost a part of me right then… I listened to the songs that make me go back to that day and those moments.

My mind kept seeing Gabriella Miller, a DIPG angel, speak in the Truth 365 video “Talk is bullshit”. Talk is bullshit… I know in my heart that awareness will bring funding. I am getting impatient. It is bullshit. We need more, we need more people to share, more people to see, more people to understand- without ever having to really get it. I want a hell of a lot less moms and dads to know what it feels like to tell their child to go home. We need less sisters and brothers to sing their sister to heaven. I don’t want any mom or dad to know what it feels like to drive away with one less child in their car seat. I don’t want those mom and dads to make arrangements with a funeral home, to look for plots. I am sick of this… it needs to change.

Today cancer stole the last breath and heartbeat of our lovely Ryder. Ryder’s mom and dad laid with him and felt him change and transition and leave their lives forever. DIPG took Ryder’s last heartbeat, took the warmth from his skin… took his functioning and breathing lungs away. Ryder is ok, safe and happy I know it. I know that Madeline and Myles and our lovely herd of angels greeted him and he met Jesus today. I know this. I hurt for Michael and Ryder’s mom. I know what this morning looks and feels like… the empty, confused, busy and broken. I want to scoop that up and fix it… but it is part of their journey. That beautiful boy was not only loved, but he loved life. I hope his family can find joy in those memories, I hope they can get through the missing.

Today Ryder’s family joins the many others I know and love that have said goodbye and had to leave without their lovely in the car seat. Those parents go home to empty bedrooms and try to make sense of it all… they try to figure it out. Childhood Cancer is bullshit.

I want this to change, I know so many do. Let’s change this… let’s bug our politicians, let’s share these children’s journeys, let’s support the masterminds and doctors working their tails off to change this… flood Facebook with pictures of these children. Humans of New York, Truth 365, CURE, St Baldrick’s, #morethan4… flood Facebook.

I listened over and over to Ronan by Taylor Swift… her words paint the picture of loss and missing. Send love to Ryder’s herd… send peace… carry this with you on your journey, and share. Ryder and Madeline are made for big things… help those big things happen sooner.

… just a little bit broken

Sometimes the best laid plans go amuck, as they often do. I guess sometimes we need a reminder that we are just human and we break, literally. Here I am today, wishing I could go hike the Christman Preserve and catch some crayfish… but I am sitting on my couch watching Wonder Years and elevating my favorite ankle.

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The worst part is the story kind of sucks!  I am all about adding humor or having a good story to go along with an injury… but this one is pretty much a mundane reminder to be careful and have your phone on you all.the.time. Here I was ordering pizza for dinner with a fave and her girls, trying to be economic. I normally order from a pizza place that ALWAYS comes to 40$… but I decided to try a different place. I was all proud of saving 17$, then while walking out with the pizzas I didn’t realize there was a step and… BOOM. I took a good digger, and this time, out of all the diggers I take- I needed help. The waitress and cook brought out ice and I loaded my big fat foot back into my Jeep and had to drive my girls and their friend home. I called Miss Jen and told her that I was hurtin’… and that our playdate changed from pizza date to babysitting. Mr. Rick got here and helped me hop to the car. We got to the urgent care… and I needed to get up to the 2nd floor… I made a split second decision to hop to the elevator (so I didn’t have to wait for a wheel chair).  I most definitely fell into the elevator- BOOM. They were awesome up there in that Bone and Joint urgent care… though they didn’t tell me my fat ankle was nothing, I guess they thought I needed a cast. So… I made the wheelchair ride of shame down to the cast room and braced myself for the rules.

All the while I tried to stay humorous and not cry. I kept thinking of all that I needed to do and all that I wouldn’t be able to do. I was sad that I won’t be able to get around. I thought about my huge pile of laundry, my yard work, my job… field days… best day ever’s… all of it. As I watched her wrap my leg, push up on my foot and keep my calf in a neutral position my heart hurt. I already felt stress of needing help, lots of it. I felt and still feel pretty darn sad.

I woke up this morning with this thought that we old people are so different when we are injured or healing. We old people, we immediately note what is wrong, what we are losing, how we can’t move or get around. We give into the bits of pain and complain. Then there are the kids I work with, that have huge surgeries or kids with broken bones. A young one, a kid, comes home from the ER or surgery- they just wake up and adapt. They don’t ponder for hours the things they can not do… they just adjust. They crawl different, they eat with their other hand, they figure it out with none of that crazy overthinking. I am cranky today, a bit sad and missing making steps on my Fitbit already. I am not going to be like this for long… I am going to figure it out. I am also going to pray that next week they let me get one of those nice walking cast boot things… I need a more attractive shoe for the Tea Party in a couple weeks.

On a funny side note Mr. Rick, with his witty sense of humor, reminded me that I saved the pizza. I still did my job and fed my kids, and a few others. This little glitch and pride buster of a fall… and I still provided tasty and non-messed up pizza. I will say that warranted a couple laughs. I also love that Miss Jen walked in with her lil ladies, salad, cupcakes and wine. She quickly poured a glass for me, to ease the pain. She is a good friend. At the end of the night, while getting my cast on, Mr. Rick reminded me of how I LOVE new accessories- I got to leave with new crutches and a lovely blue cast. I guess there was a plus in this mucky night.

So last week I was feeling really weak and heavy. I sat in bed and said (in my head) ‘good morning Madeline’ I followed up with a little side note to God- ‘I want to get stronger, I want my upper body to be stronger’. I guess I wasn’t specific… crutches create really awesome upper body and core strength. Maybe He has a sense of humor, like I try to. I think I need to be a little more careful in what I ask for…

So today I sit and watch Netflix and feel very glad I am super ready for the Best Day Ever tomorrow. I feel glad I have some pretty rockin’ people God placed in this life. I feel blessed that God sent Mr. Rick… he is kind and patient and caring. Like I said, I am a little sad and a little sore today… my pride is a little broken right along with my ankle- but I am here. I will be good, in fact I might be better. I am forced to slowdown, God did it again… He forced a slowdown… and I got new accessories.

Shut up and dance with me…

Remember to dance big and twirl lots.

Remember to not care who is watching, spin anyway.

Remember to put your arms up and shake it off.

Remember to laugh and pull strangers out with you.

Remember to remind those young girls to dance to…

Last night after a scrumptious dinner out in perfect weather, we stopped to see some friends. Enjoying a glass of wine with friends in the sunshine and energy of people and music. We sat and laughed and told stories and caught up. All the while a band was setting up and testing lights and microphones and things. Many of the friends and people at this great outdoor space headed to another spot with a different band, but we stayed.

A little white wine and seltzer, lots of laughs and some great music were all we needed that night. I grabbed my lovely Amy’s hand and pulled her out on the dance floor. She doesn’t dance. I couldn’t not. The concrete was empty of dancers, only us, twirling and dancing. Some Lady Gaga covers, Taylor Swift and of course some “Happy”. How does one walk away and not twirl and get sweaty? So we danced, even though we were the only ones, even though we were probably not good at dancing. I only saw smiles and hopped around in my ruffled dress. I felt light and free and happy. I felt bold and brave for going out to dance anyway, no one else really did. Then I remembered who freakin’ cares… dancing makes me happy- alone or together.

Silly or serious, fun or intense… dancing makes me and most happy. I remember dance parties with my girls… nights of twirling and rocking out. I remember the hardest nights of missing Madeline being coated with a ‘Just Dance’ video game party. The night I discovered Matt was in Florida with another girl and he had been very dishonest with me… I was broken. My friends surrounded me, cried with me and picked me up… then at the end of that nightmare of a night Lauren turned on Pharelle’s Happy and told me to dance. Dance the heavy off, at the end of the night just let it go. I didn’t want to dance that night, I didn’t want to twirl, I didn’t want to smile. I wanted to sink away, I wanted to be alone and broken and cry. I wanted to stop moving…

I danced. I was still broken, but I danced. I remember very little of that night, but I remember having to dance. I lived. I grew. I slept… I smiled… I healed.   It started with a dance…

On a sunny and beautiful night in downtown Schenectady, or in a friend’s kitchen cooking and listening to Pitbull Pandora… we dance. We are the only ones who smile and twirl… who hop and shimmy to feel the ruffles move. We pull stranger to dance and smile too… it is what we do. It is what it is about… not caring if we are the only ones, not caring it we look silly… we dance.

I woke light. I woke happy. I woke more healed and more full. Why do I forget to dance more? Why do we forget to bring others into our happy moment? Why don’t we just go dance on the lonely dance floor and not be scared, the payout is high? I wish I always were the girl who twirled and hopped and smiled with no care what anyone thought about it… but alas I had to get to be this person.

I wish sometimes I could have told me back then to dance anyway, heal anyway, forgive anyway… live, breathe, smile, cry, break, heal and grow anyway. I definitely wish I had danced all the time… so… remember this. Dance. Grow. Move. Live. Smile. Cry. Break. Survive. Love. Hurt. Forgive. Twirl…