… Things life can throw at you

Lemons, Limes, Tornados, Stomach Bugs… etc. etc. etc.  I think the common theme in life is that plans change and nothing works out as we imagine it should.  It works out for the most part, but it looks really different than we thought it should.

I try to remind myself that I am not the Architect in this.  This fact should make us glad, but I think for the most part it infuriates people.  I am becoming darn good at the Plan B, at least I think I am.  I think it is pretty great that when the plan I imagined failed, it isn’t really my fault.  It is my reminder that I.do.not.design.the.real.plan.  I just try to…

I love the term ‘when life gives you lemons, make lemonade’ (and I love the limes and margaritas version too…).  This weekend, nothing went as planned.  I guess somethings did, the tee shirts were amazing, designed by Madeline herself.  Many awesome people got together to share Madeline and embrace another family who just joined the Childhood Cancer Family.  The weather, as it can act up at any time, decided to get all crazy and drop some tornados near Alex Bay.  The planners of the Polar Bear Dip had to make a tough call and improvise with the pool.  This was one of those moments, the ones where we choose to build or break people and life.  There were many very mad people, that really wanted to dip (odds are they have never jumped in a freezing river before)… they were just mad.  I get it.  Mad is the first feeling… but the more important feeling is empathy.

Imagine planning an event, one that so many enjoy but requires MANY added safe guards.  The planning team is responsible for the safety of the jumpers, and they had to make the hard/sad call.  I felt sad for them.  I have planned many events that nature hops in and ruins the plan… it isn’t fun to say ‘no’.  I felt for those planners, and I looked forward to next year’s dip… maybe, maybe I will rock a bikini or a mermaid suit?!?!?

I like to take my lemons and make kick butt margaritas, crap I mean limes.  I put my loud voice on and got a little bossy and decided we would freeze our bodies anyway… in a safer place.  I told everyone to get their junk and head to the beach down the road… we were going to get cold for Trevor.  Off to the beach we went for a plunge… this of course didn’t go as planned but as is life.  We all got cold and Lucy did her first Polar Plunge too (brave chica).  It wasn’t what we imagined but it did the job… it reminded me that life is chock-full-a-plan-B.  God reminded us to take that tornado and make some … lemonadeish.

Today, or rather during last night, Lucy secured herself a nice stomach bug and we spent the night cleaning sheets and trying to get some zzzzz’s.  I hate seeing my kiddos sick.  She was so sad.  We had a plan today.  We were going to wake up at 6:15am and get on the road so we could enjoy some Delorenzo Boy hockey games.  I didn’t want Mr. Rick to miss his boys games.  Life threw us some lemons, or maybe a need for Clorox wipes.  I sent Mr. Rick back to Albany and burrowed in bed with Lucy, hoping she felt better.  I was sure I could rent a car easily… only I was in Watertown on a Sunday.  Renting a car is not easy in Watertown on Sundays…

After a crappy experience with Rent a Wreck (hey I didn’t name them…), I happened upon a rockin’ awesome Enterprise shop.  I was consistently reminded that God wants me to practice patience (but I know He loves me even when I fail) … and to remember that this life is in His hands.  He is the architect, I am part of the drawing… I know nothing about the real plan.  This is liberating and annoying…

We made some lemonade from some lemons, only Lucy could drink or eat nothing… so she pretended.  Enterprise upgraded me, and the girls had reclining seats.  They no longer love my trusty old Jeep… they want new.  Thankfully or maybe hopefully, a new shiny car is NOT in my plan.  I love my trusty, slightly rusty, little boxy and scratched up Jeep.  The girls enjoyed the hot set of wheels and I just wanted to get home to my house… my couch, my rugs, my TV…

So… today could have been worse.  It could have been better.  It is what it was, exactly as crappy and amazing as it should have been.  We missed hockey, I overloaded my mom with puke bedding to wash and we spent a lot of time trying to come home… but here we are enjoying steak sandwiches, watching Storks and ready for tomorrow.  Lemons à Lemonade (but I could go for a freakin’ margarita).

I learned some things to make my lemonade better next time.  I reminded myself and many others that life is life… it is crazy, complicated, heavy, awesome, fun, easy, painful and hard.  We are meant to live it, to entrust the grand plan to The Big Guy… and live on, make lemonade with lemons, margaritas from limes, best day evers from hard stuff, Plunges from Unsafe Dips… adventures out of stomach bugs and rental cars… life.

Life is hard.  It is harder when we fight accepting that we can’t plan, if you start reminding yourself of the skills of enjoying the broken plans.  Once upon a time… I had plans… I saw the future I imagined.  I thought I knew what it could and should look like… but here I am missing my Madeline and enjoying life after divorce… never-did-I-ever-imagine-this-very-spot… but here I am.  I am going to stay right here, right now- and get my Lucy better, unpack my house and let the girls tell me I am ghetto because my seats don’t recline.

Live.  Laugh.  Cry.  Accept.  Grow.  Grab on to Plan B.  Love your support.  Do the sad.mad.glad… let it go.  Run.  Dip.  Jump.  Break.  Build.  Drink your lemonade, or margaritas… stay safe from those tornados and try to keep fluids down in your stomach bug… it is all bits of life.

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Someone HAS to be first…

Is it really rare?  The past 5 years I have spoken and discussed DIPG with so many.  I have written and spoken the same words over and over.

“In February 2012 Madeline, my 5 ½ year old daughter, was diagnosed with DIPG.  Diffuse Intrinsic Pontine Glioma is a very rare and inoperable brainstem tumor.  This tumor steals basic functions from children and is basically untreatable.  I was told my daughter had weeks or hopefully months to live.”

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I keep wondering if DIPG is actually rare.  It isn’t rare.  I can’t keep saying that word when I share.  Rare leaves the impression that there are very few children and families faced with this journey.  Rare doesn’t help you understand that it can happen to you, your daughter’s best friend, your son’s teammate, your niece, your student… your friend’s son.  DIPG is a roulette wheel, where it lands no one knows.

We woke up on February 2, 2012 having no idea what DIPG is.  We could have never imagined what a beast this cancer is.  Imagine a doctor telling you your child would ultimately die in less than a year, that there is very little treatment and she will lose the ability to do things she loves and KNOW that they are missing.  Swallow tests, breathing clicks, steroids, vertigo, radiation… hope for a small window of well so she could enjoy her time.  DIPG is a beast.

In 2012 with the donations of tumors from amazing families who lost their lovely, researchers were finally able to ‘see’ this tumor.  In those 5 years of work and research not so much has changed.  They are many steps, not quite leaps, from what they knew only 5 years ago.  I keep hoping that they’ll find it, that I will get to see a child survive this.  Someone has to be first…

This past summer, on a rainy and cloudy day, we celebrated my friend Dana’s 40th birthday at the Saratoga Track.  I remember dancing in puddles, drinking margaritas, acting like I cared which horse won and chatting with one of Dana’s old friends.  We talked for a long time about our journeys… she talked about the loss of her mom, I about Madeline.  She saw all the pain, she felt all the missing… and she still looked broken from that loss.  I talked about Madeline and all the parts of this journey that got me to that day.  I tend to keep my broken a little hidden and use humor to diffuse the pain in these conversations.  If I don’t I can’t always let myself enjoy events.  We talked and then turned on different talk… kids, life and horses.  Christine had her 4 boys and I had my 3 girls… albeit one is an angel.  Even in all of the rain we had a great day, I looked forward to our paths crossing again someday.

That was then, this is now.  Christine is now a momma to a little man with DIPG.  She stood with me that day and I am sure told herself she would not know what to do, how to live if this happened to her family.  She looked ahead to the future- proms, vacations, graduations… life beyond.  She has now joined this club that I wish never existed- DIPG Family.  Her youngest son, Devin, was diagnosed 3 weeks ago, after a fall while snowboarding.  Devin is a 6-year-old fighter, a 6-year-old DIPG kid with a journey that no one can prepare for.  Life beyond looks very different now…

She has joined the parents who have to do the unimaginable… working around the clock to find new research, clinical trials.  Parents who weigh living today and getting more tomorrows… with effects of radiation, travelling and steroids.  The roulette wheel stopped on their spot… and time is running out.

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Someone has to be first.  Why not Devin?  Things have changed since 2012… can it change more?  DIPG isn’t like other childhood cancers.  Something BIG needs to change… we need to talk about this, fund research… we need to see better.  Devin might be first…

You are aware.  You and yours are on the roulette wheel.  DIPG is not rare… it is untreatable and fatal.  DIPG tumors grow around the Pons of children’s brainstem, the oldest part of our brain.  It takes away the living- running, walking, laughing… it then steals children’s smiles and words and eventually breath.  DIPG took Madeline’s last breaths, her giggle, her song, her heartbeat… I remember laying with her, how cold her hands were.  I don’t want Christine and her boys to see and know this part… someone HAS to be first…

Why Not Devin?

How can you help… share, talk, donate, spread awareness and support his family.  We might be just so close, let’s try to help Devin be first <3…

Share.  Share.  Share.

Heaven, on Earth.

 

 

Sometimes I really wonder what Heaven is.  I never wonder where Heaven is, only what it is like.  I don’t think we can wholly understand where or what it is.  We are far too human to ‘get’ it.  I think sometimes Heaven might be right here, living along us and amongst us in a parallel way.  I can feel Madeline, sense her sometimes… what if she lives right here along our lives.  She might really be along for this ride with us…

When I think about Heaven I see light, simple, fresh, clear, content, safe and comfortable.  I think about that first sunny and slightly warm day in April when you invite friends and grab hot dogs and smores- for the first time in so long you can linger outside and see light at 7pm.  I think of the feeling of complete relaxation and awe when I stand near a place that is naturally perfect… a sunset on Lake Ontario with family, Mirror Lake in the fall or covered with snow.  I remember the feeling of sitting with my fresh baby on my Boppy and just looking at her in complete (exhausted) joy watching them breath and contemplating the amount of work God did to write the DNA for that dimple or wrinkle.  I am brought to that feeling just after you do something really profound and scary… that crazy heart beating and scared- followed by a content proud after you spoke in front of hundreds.  It is like God knew you would love it- even if you didn’t.  I see heaven as a place where we can try EVERYTHING… and there is a whole new place of new experiences.  You know that feeling of putting your foot into the ocean for the first time- the ocean is a such a vast world getting to enter it for the first time is such an awesome grounding experience.  After… the ocean is no longer this world so far away, but a world you have touched and entered.  I see sunsets and waves… natural beauty.

Madeline is in Heaven.  I don’t know if it is a whole place or if it is unique to each of us.  I wonder if Madeline is right here living her Heaven… I won’t know until I head to Heaven, or maybe My Heaven.  I often talk to the girls about Madeline’s Heaven.  We read a book called Sargeant’s Heaven for a long time after Madeline died.  So many offered books about grief and death of a sibling… but this book was tangible to the girls.  After Sargeant died his 2 brothers drew pictures of his Heaven… how he has the best view of fireworks and that there are no shots in Heaven… the girls loved that Madeline probably doesn’t have to clean up her toys anymore.  We would read it, Lucy could recite the whole book, and we would talk about Madeline’s Heaven.  We all knew she was safe and okay… when we read this we imagined what she was doing.  We guessed what kind of things she would do or have in her Heaven.  I imagine her Heaven is full of sunsets and family.

My Heaven, here on Earth, is the last place Madeline visited before she died.  I am drawn there.  I feel the weight of life and work and responsibility lift from my shoulders as we travel up the Northway.  I feel that light, contentment, simple, natural beauty… that fresh and safe.  You can stand in the middle of Mirror Lake and be surrounded by it’s magic.  Ice and snow… mountains, light, wind… out there we walk on water.  Yesterday I had some sadness mixed into the day.  I felt it, but just kind of let it linger… right next to the light and funny.  Hanging with my nephews, playing in the snow, wandering and watching the girls play in the pool added light.  The day ended with pizza delivered to our room and watching Planet Earth in bed.  It was a perfect ending and I felt lighter…

Lake Placid is my Heaven, here on Earth.  It is equal to the sunsets on Lake Ontario and cottage time.  I feel refreshed, ready to get through this new year of missing.  I am starting to miss even differently.  The missing has changed again… maybe it is just knowing and feeling her Heaven next to my world.  Others told me back then that it would change… it’s a relationship.  I have a relationship with Madeline’s missing… it ebbs and flows, sometimes it feels strong and painful but as time has moved on it is different.  I know that the pain will not take my breath away, I am conditioned to feel it now.  It is like moving to a high altitude- in the beginning even the most fit have a hard time breathing in the lighter air.  Every breath takes in less oxygen than we are used to… but eventually we are able to run a marathon in that lighter air.  Our body conditions itself to live through it and enjoy that new area.  I am conditioned for this next phase of the relationship with Madeline’s missing…

I live with it, her in her Heaven and me getting to go to mine, right here on Earth. 

Now I am home, a few hours away from my Heaven.  I am content and comfortable.  I am warm and snuggled in to my living room.  I can hear the girls romping around in the back yard with their boots and snowpants… Sparky is most surely been included whatever game they are playing… and I think maybe this is my Heaven too.  Maybe, just maybe my Heaven is all of these places…

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Success and Connections.

 In all of the crazy of these past few years, I reflect back on all of the connections.  I write about it a lot, maybe too much.  The connections are my reminders that life is a beautiful woven fabric… threads connected.  What an amazing and unique fabric my life is…

Last year I got to connect with a Newscaster who has become a super special friend.  We started meeting to work on a project, one of those fun ones that sharing lots helps create.  I wasn’t sure what to expect when we first met, but I was pleasantly surprised.  She was real and just like me… with a nice twist of way more organized and maybe a spoonful of Type A.  I fell in love with her… I felt comfortable with her… we shared and shared… and shared.  I am sure she had to sleep for a whole day to let her mind get through the fast and crazy amount of information I spoke quickly.  Thankfully for me- we got to meet many times. 

JoDee has this great grown up job- she is the Morning News Anchor for TWC News.  She wakes up at an ungodly time and gets her face beautified and she delivers the important stuff through the morning.  She uses her voice and words to help others, her ambition to help build other’s to be stronger and build themselves better and more confident.  I love that about her.  I love our conversations and the normalness that her 3 kids and big cats bring to our conversations.  JoDee is a driven lady, a strong mama, a builder… I love all those things.

I am learning oodles from her, though I want to keep my solid Type B personality- she pushes me to try to connect to my inner Type A.  She pushes me to be more organized and visualize.  A few months ago I attended a ‘Vision Board’ party… I was late (it was an accident).  I worked on my vision board and the words I wanted this year to be… kind of a way to see it and make it happen.  I love doing this, chalking out time to look forward in a creative way.  This schedule party encouraged this in me, or maybe I was just held me accountable…

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A vision board is a great image to work out to.  If I had a home office I would place it in front of my desk… but a pillow on my lap, a couch full of Musto Chicks and Netflix are my office.  I work out and see those words… I try to engrain them into my being.  If I keep reminding myself to create, build, work, smile and BE me… it should be a habit soon right???

Anyway… we have been working on a project the past several months.  I have been bugging my friend to BEGIN and take her leap for her Podcast.  JoDee is finally starting her Podcast and working to highlight success and people who build this world better.  We need this… we need builders.  I love connecting to builders… especially when we can help build better and stronger TOGETHER. 

You know God and His threads… weaving these amazing fabrics.  The gift is seeing it all… I love that part.  I love being challenged and learning new things… I love connecting and feeling the building we are doing.  I especially love when friendship forms and a whole different dynamic can start… I am very excited for some of the opportunities JoDee brought to me… I am excited for all that we will get to build better together.  I am grateful for this thread and friend… to work together.

Jodee Kenney is working to launch her Podcast and help support and share Madeline (best kind of support ever).  She has heard and felt so many parts of Madeline’s story… she wants to build others to know this.  I love when we meet up and connect…

Connections… are little gifts, weaves in the fabric… that get the work done.  I love the day I met JoDee at Starbucks and talked for far too long… and drank too much caffeine.  The work we are doing together is important.  The work she is doing beyond is quite important too… if you are able to come March 1, 2017 do if not be there in spirit <3.  I would love if you took that time to remember those connections that are in your life, honor those gifts.

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The Art of Being Vulnerable

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Vulnerability is opening oneself to criticism, temptation and hurt.  In Latin vulnerable is equivalent to ‘wound’able.  If you only read this part and never dive deeper you might think that being vulnerable is a bad thing.  I know in some situations it is a BAD thing… battle fields and unsafe places.  I think of being vulnerable as a good thing, maybe it is one of those hard and scary things that help life be more amazing.

I, myself, am a big advocate for the importance of vulnerability.  I know that the closest and most real relationships are forged on the times those included shared a deeper part of themselves.  It is scary, but also it is worth it. 

I like to think of it as getting naked, exposing parts of yourself that open you up to potential hurt… but ever-so-often it instead creates stronger connection and deeper love and true understanding.  I try hard to stand up and ‘get naked’ often… sharing my brokenness, exposing my hardest parts to others and being ready and not-too-fearful of criticism.

In these years of writing more, speaking more and sharing more… I see some are so afraid of this ‘getting naked’.  Many have an extreme fear of vulnerability, fear of rejection and hurt.  This fear makes sense to some… but it doesn’t make sense to me.  I don’t know which way is better, only that I try to live not fearing any part of me.  I can’t say that I have never been hurt in sharing.  I have experienced criticism.  I have been terrified of rejection… but I try to live on and do it anyway.

Last week I was a heavy and broken mess.  I took the girls to school and knew I didn’t want to go home.  I knew what was waiting for me at home… an empty chair and my lonely hurting heart.  I called one of my amazing ladies, hoping she could grab an egg and coffee.  I got one better… she had to stay home with her son and instead of going out made me a scrumptious and wholesome breakfast in her cute and warm kitchen.  I felt comfortable, loved and safe.  I could ‘get naked’ there, and she could too.  In our years of friendship, we have delved into our broken, our embarrassing.  I can honestly say she holds a bit of me, and I of her.  I know I can sit with her and share it ALL and she would love and care for me always and anyways.

My closest relationships are built on this shared brokenness, sacred brokenness.  Close, safe and strong are built in the broken… up out of the ashes (albeit slightly dramatic).  Life is full of broken moments, we all have them.  I remember caring for my grandmother and the vulnerable place she was in, how I kept her safe.  I think about my lovely friends who have miscarried, in all stages of life in the womb, and how broken and hurt they were… caring for them and seeing their exposed hurt created a bond that is so much stronger.  Those sacred and painful broken moments built us closer.

Shared Brokenness… maybe that is a good way to really explain vulnerability in a good way.  Opening ourselves to potential wounds is an art- the art of being vulnerable.  Imagine if more of our world tried to be more vulnerable, if we took down some of our walls and tried to see one another as what we all are- broken and beautiful.  I try to see each other people I encounter in this light… living in their own life with their own experiences that make them more or less guarded.  Shared brokenness-maybe there is something in that.  There may be some crazy important in the art of being vulnerable. 

My hope is that my work in the art of vulnerability can help others build themselves and their relationships better and stronger and more real.  It is an amazing gift to be connected with another who you know that deeply, to share with others and feel the connection created.  It is hard sometimes to share openly, it can feel like I am naked, but it is worth it.

What are some moments that vulnerability shaped you and your relationship?  I am grateful for mine… morning coffees that got deep or a good cry on a lap.  I will continue my work on the Art of Being Vulnerable… will you ‘get naked’ with me????

 

 

PS- Read Brene Brown’s words about vulnerability and life she is AMAZING and inspiring and makes so.much.freakin’.sense.

Snow Day Blessings…

Just what the Doctor ordered, only God sent it instead.  Today is a beautiful, white, cold SNOW DAY!!!  I was surprised and glad when I saw the text… I only wish I had seen it before so I could sleep in.  Little deal.

While I am busy enjoying a day of Netflix movies, Nicolas Sparks and Untamed Heart… the girls are playing Calico Critters in their rooms and outside in their snow pants.  My windows are covered in our homemade snowflakes… and now layers of real snow.  The snow keeps coming… the pine trees in my yard are carrying the snow on their branch shelves.  I didn’t even know to anticipate this day in… what a treat.

I love the slow that snow brings… I grew up in an area that snow would only gift us a snow day if it was a severe lake effect storm or an ice storm.  Weather is different here near Albany.  Lake effect doesn’t get spoken here, there is no Lake Ontario nearby to plop feet of snow down.

When the girls were young it was the best on snow days… we would head to target and wander.  Noone would be out and about… I was free to wander and get the girls snacks while we walked.  I could peruse the clearance forever and just get some movement it, while there weren’t a bunch of people there.  I loved stopping fast and letting my Jeep slide, just a little.  Being silly while we drove home, while the girls laughed and sometimes slept.  I miss those snowy Target dates… I can only imagine how many things I came home with that were only semi needed…

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Today I busted out my real camera.  I looked through the memory on my lovely Canon Rebel T3 and I haven’t picked her up since the first day of school.  I didn’t feel like it.  I put her and the full memory card away.  I had to charge the battery, but I knew that I needed to get today on a memory card- not a cellphone.  I needed to have today on the real camera.

Smiles in the snow.  Important moments that need to be tangible and there for the future.  I miss that camera, the way she feels and the moments she catches.  I would be so mad at myself now if me 7 or 5 or 3 years ago could yell at me.  I will try to remember to keep charging that battery and getting new memory cards… catching those moments.  Smiles in the snow…

I love today.  I love simple at home days… especially when there is nothing pulling us to do something else.  Today home is a little sanctuary… a little bit of being stuck right here in this place, surrounded by snow and cold and 2 girls playing make up and super heroes and vet…

Enjoy your snow days, either at home or at work… or maybe you are somewhere warm.  Enjoy today, even if it isn’t what you planned or prepped for… that is the way of the world, the way of life.

Handling it.

Today I don’t feel it all, today I didn’t spend all day thinking about where and what we were doing.  A little bit of me feels mad at myself.  I talked to Madeline’s teacher and many others and I could tell that this day was weighing on them- as anniversaries tend to.  I just walked on… I focused on the chaos of the day and trying to find that simple order that is so easy for me to find working at school.  It can be a busy jumble of a day, but those are the days I love.  I keep reminding myself to let myself be fine and present and not dwell… that it is ok not to sit in it all right now.  I should know from experience that it will ALWAYS catch up to me, it will always be there to sit in.

After a crazy day with all of my friends and fellow teachers, I get to grab Lucy.  I love seeing her walk down the hallway.  She has a swagger, a LucyWalk.  Lucy can lighten my heart so quickly, it is her gift.  We wandered out holding hands as she told me about the slowest animal and how she wants to do Jessie Owens for her wax museum project.  It was a bit of simple order in the pile of chaos…

We picked up Amelia from band and talked about her science fair project.  She begged me for a panini from Brown Bag and we planned out the night for Odyssey of the Mind work.  Home brought a plethora of normal- homework, snack, laundry, dog out… back packs away.  I really want to burrow and watch TV as the freezing rain plops onto the house. 

I sit here right now, in this pile of normalcy, doing what we do on Tuesday nights.  I know what it will be when I take a seat for the night, when I let myself delve in.

5 freaking years… almost as long as Madeline lived here with us.  Crazy.  There have been so many Tuesday’s and weekends and celebrations and normal and chaotic inside that 5 years.  This year will be different for me, Madeline’s anniversary of heading to Heaven falls on a Wednesday night.  The ladies will be with their dad tomorrow… and I will be left to find something for me.  I try to put myself in those ‘good spots to be’… and so I am getting a massage and lunch with a friend… maybe a pedicure.  I will try to just be in those good spots to be, surrounded when I need.  My family is celebrating Madeline back home, so I know she will be right there with them. 

It is surreal that 5 years have gone by… at the same moment those days and moments and hours all combined feel like 100 years.  It is weird that 100 years could be squished into only 5… time is a funny thing. 

I always say that I will miss her, until I don’t have to anymore.  It is how life works, we are here until we are not.  There will come a day when I no longer have to miss Madeline, that I will see her and be with her.  I like to think she will have a super hug and a butterfly kiss for me… I will swoop her up and feel her again.  I love life, I love Earth, I love my gifts… I see them all- but when the times comes I am done missing her, I am done with the chaos and normal of this world.  I will be on to the next… but there is so much life to live here, until there isn’t.

5 years ago my lovely left us here to miss her, she knew we could handle it.  Life is a series of handling it… living and missing, laughing and crying, running and sitting, celebrating and breaking… all of it.  She left us here with big jobs… more than just handling it, she wants us to change it. 

madeline-1Do something wonderful and kind and simple and compassionate today, tomorrow, Saturday… next week, a year from now.  She wants you all to handle it too, she knows we can.  Go out there, in the chaos and create some simple order- handle it in memory of her.