DIPG.

I think this article is so much like our family story… a little girl like Madeline, a disease that snuck up and a life that was cut short.  The details are different and alike…

The story explains DIPG very well.  I think it is broken down the best I have ever seen, for anyone to understand.  It is worth a read.  I am sure your world will be once again changed by Caroline…

 

http://www.bostonglobe.com/metro/2013/09/28/the-gospel-calle/aeUaMGjJKwTGislhzJm9CM/story.html

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The sweet sound of running…

I had 2 good outside, sunny and strong runs this week.  BOOYAH!  (I don’t know if people say that anymore but there it is)

It felt great to feel the running again, though I am sure I need new sneakers.  This whole summer was filled with hurdles that I didn’t have the energy to maneuver and get over.  I had to kind of accept that running and working out were last on my list of survival for a while.  I lost most of my confidence in my work out, my drive to finish and my brain medicine.  I lost all of that.  I am having a hard time finding it again, but know it is still in me.  These runs were a step to finding that… a foot to ground, wind and sun and cooler fall air… a great couple of runs.

Today I let myself think that maybe some big goal is possible next year… looking ahead is really hard for me.  To think that maybe I might commit to a big and long race again is scary and exciting.  Today my mind travelled farther than tomorrow.  I think that is a big leap for me lately.  I am still mad at myself for acquiring an extra 20 pounds this past year… I am annoyed that I let myself and hope that a good schedule of good runs, strong workouts and time will help me send those 20 pounds somewhere else… I am hoping that with some of the confidence gained and goals my mind thought about I can start to use running as my brain fixer again and not food… see more of my people and less of my lonely Downton Abbey and Breaking Bad nights with lots of lonely wine… I hope I can start to find that me that had push, had fight, had motivation… she was a force to be reckoned with.

I always remember how proud Madeline was of me running… though she always told me she was faster.  She was very proud of my Marathon… I wish I had brought her to cheer me on.  I remember showing her and her friend Jack the week after my Marathon how far 26.2 miles were (Jack’s dad was running a marathon while I was driving them to a birthday party)… she was very impressed that I had run as far as we had driven for a birthday party… I miss my lovely little racer.  I think she would have done track or cross country… or swin team.  So many things I never did, she will never do either.

I am back my dear… back to your running mama… finding me… love you darling…

 

 

 

Do I share too much bad????

This post got me thinking… and made me wonder if me ‘friends’ thought I blasted them with depressing things.  I didn’t hope to change my postings… I feel that sharing is the best way to change this.  How is it said?… awareness—> funding—–> research—–> changes/cures/treatments/trials… CHANGES.  So I will do what I can in sharing me, my life, our journey, Madeline’s story… and so many others.  It is a need.

I have said it a million times- once you are aware of something you must be changed, you must do something about it.  If people chose to shut down, ignore or dislike posts they are in denial of the fact that this killer and life changer can hit their home, their nieces and lovely little grandbabies… Childhood Cancer can strike any CHILD.  So I will post and share and fill my feed with what I know is important- stories of families, things people can do and of course little bits about my lovely ladies and our crazy and hard life…

Here is the article that got my brain tinkering…

http://nicolescobie.com/?p=339

Where did my life go? Living after loss…

I am always so thankful, I say this over and over, for the fact that so many invited me to write and share my lovely… my journey… our story…

A Nation of Moms blog posted another set of my words… thank you very much…

http://anationofmoms.com/2013/09/where-did-my-life-go-living-after-a-loss.html

(here are the words)

Where did my life go?  This is a common wonder I have.  Where did the ‘marry my college sweetheart, get a house, get a dog and have lovely set of three girls’ go?  It obviously went somewhere.  Maybe it was always not the way it was anyway… or maybe it is broken right now.  So many parts of that line-up are just so different, now that Madeline is gone.

What changes after this loss?  I think an easier question is what stays the same… and honestly, that would be nothing.  I guess your shoe size stays the same- so scratch that previous answer, I got ahead of myself.  Nothing stays the same… nothing is at it was.  My life is so different now… it is on another level all together.

My parenting changed… I realized that in all of this those lovely ladies are just as changed as me, in different ways.  They lost a role model, a safe… a piece of their heart and world.  They have to grieve and take over certain roles.

Amelia is now ‘THE big sister’… she had to relinquish the middle sister roles… all of the sudden she was the oldest in a way.  The oldest sister has sooooo much responsibility.  That is a hard role to fill and Madeline left big shoes.

Lucy is a real and simple and comical person in all of this.  She is the most knowledgeable and innocent in all of this.  She knows where Madeline is and painlessly pulls Madeline into every single day.

I am a losing parent most days.  I am too tired to fully follow through and make a point… I am thankful often that God gave me ‘pretty-much-well-behaved’ girls and they independently are generally kind and good… because I am too darn tired to do it all.

My marriage has changed…  In fact I often wonder… where the heck is my marriage?  My solid and real marriage… until I remember that I didn’t help build a solid and real marriage.  I was so tired and busy and burnt out from all of the parenting and life of three very little ladies that I forgot to work on the solid and real and important parts of my marriage.  That leaves today… a day when I crave the solid and safe part of my husband… and I am lost.  He is lost.  We are working harder than most can imagine to find our marriage, to be the best parents to our 2 non-angels and to find ourselves in this mess.  We should have been maritally prepared.  We are learning and trying and living… but it is hard.

My ‘me’ has changed… I am so not the person I was… I can’t even remember her.  I am less caring, more even-natured, and overall just less emotional.  I have lost the ability to feel most feelings… which is strange and weird to me- but makes sense.  I mean who could get through the layers of feelings that I have?  The layers of loss?… So my mind numbs those feelings.  I sometimes step out of the numb, but many things have brought me back to the numb place.  I hate it numb… it means no real and deep feelings of pain… but also of joy, happy, excited and okay.  What is life without happy, excited, joyful and okay????  There is no time for the ‘me’ of the past.  She did so many crafts and projects and finished… this Erin is so much less organized and crafty… I overthink so much with the ‘real’ world and meanings inside of it.  I mean seriously Erin who cares if you make homemade birthday favors or take hours to create a perfect and personalized gift??? That is a waste… but is it really?  I feel so happy to see Madeline’s friends still wear and cherish the tiny hand painted ‘Madeline’ Peg person I spent hours making… that is kind of priceless to me… but the time is so expensive now.  I don’t doubt that life will bring me time… Life and God have brought me, in a way, everything I have ever needed.  Was it what I wanted or asked for? … Rarely.

My perspective has changed.  I see the world in a different light.  I see people as being temporary.  I see nothing as permanent.  Think about it… what is permanent.  What lasts forever?  Granted, I am glad that I am not here forever, forever is a really long time.  I am all good when the time comes that I get to rest and go be with Madeline, all good.  My overall view of life and living has changed… even this numb shell of me.  My shell knows that life is great, living is fun and enjoying is a need.  That shell takes my girls to the beach, creates adventures and inserts diversions when the need is there… but the shell is numb.  The shell of me is (who I like to think is skinny and lovely) taking care of living and enjoying- even if ‘real Erin’ can’t.  I miss the days that I knew I would have 3 special and different daughters go to college and grow up… 3 wonderful bits of Matthew and I take on the world in their own way… I wish I could think about that now.  Instead I live in a day to day to day… and moment to moment to moment life.  Instead I know my loss when I think about it… and I have 2 amazing, smart, silly and individual ladies to do the best that this shell of Erin can do right now.  College is a LONG time away.  So my perspective has resorted to a day to day to day… and moment to moment… it is a perspective knowing that children die, people let you down and life is hard… God doesn’t let us pick the outcome and will guide you along the way… it is freakin’ hard.

I miss ‘me’, Madeline, Matthew, Amelia and Lucy, life… bits of my perspective… I miss so much.  I know that God will make it more livable and survivable… and will really know that when I can look back, in retrospect.  I know that I am ok.  I am alive.  I love my lovelies.  I am tired.  I love Matthew Musto.  I love ‘me’.  I freakin’ miss Madeline and love her so much… I miss her skin and heart and hair like no one can know… I miss naïve Erin.  I miss life sans ‘shell of Erin’… but alas this is where life has gone… where it now goes- only God knows.

Good days are followed by hard ones…

always.the.case.

I will go out and enjoy a big day- whether it is just us as a family or an event that is honoring and sharing my lovely… the day will be full and fun… sometimes loud and crazy… it will be great.  I will get to tell everyone about Madeline and her sisters… her disease and her death… more importantly her life and her legacy.  I will spend time being social and smiling and in a way happy… the day will be bright and somewhat hard sometimes.

Then BAM.

When the day is done and the dust settles, on comes the feelings and the grief and the overwhelmed and the heavy and the hard.  It never fails.  I love it and hate it at the same time.  I love the pain of remembering in that way, and knowing that she is right here in my brain and heart and not gone.  I love the still that comes with this feeling many times… it is a sad calm.  This sad calm grounds me and reminds me to stand still and feel and embrace the hurt.  I wonder if this will change, if BAM will spread out and only come after every other event or day someday?  I am sure it slightly dissipates, that the pain is less with time, in a way.  Maybe the pain is no less in this kind of a feeling or day- but we are used to it and it doesn’t sting so badly… maybe we are kind of immune to it on a level.  I don’t know.

I have talked and talked and shared and shared and presented and conversed… for like 5 days.  I am tired.  I needed the BAM and it came.  Tonight I am tired and lonely and sitting in a pile of this.  I think I will delve deeper and read a special book and catch up on Travelling Mercies (I only let myself read a chapter and then let it sink in)… tonight I will read this book (below) and read about another angel, written by her mom.  Tonight I will let the heavy and hard and blech and ick and sad sit on my shoulders… tonight I will let the lonely hit me.

41TkeXA+MEL__SY346_

I wouldn’t change a thing by Gina Peca

Reflections on growing children…

So with all of these wonderful and insightful articles going around on parenting, mothering and life moving fast I just wanted to comment, or write, or share… or something. I look around and I don’t see things that I regret… many of those articles and blogs suggest regret and sadness.  I think my perspective is very different.  I love to see them grow.  I have one whole member of my amazing little Musto clan who will never grow… growing is awesome.

I love to hear them say things that are so grown up and just beyond what I know they understood… I love to see them tackle new challenges that they were once to young for.  I love this.  I do sometimes think it moves to fast and that life is just soooo busy… but I love to see the growing and changing and becoming… I talked to Lucy and told her- ‘Stop growing dear, I love you just like you are right now”… and she told me “Mom, I can’t.  God keeps giving my just one more day.” and I was sold.  I am a believer in growth… I am going to be a lover of a healthy and true aging process… wrinkles and all (I do love sporting this long hombre hair color though… so maybe just that thing I will maintain :))… I like getting older.  I think my 30’s have been really hard, and I am on the early side of them.  I think the skills and lessons I am learning to just live now- will make my forty’s the best they can be.

My big hope is that as they grow they carry me and Madeline and Matthew… and home, warmth, love, kindness and smart hearts with them.  I pray that they make good choices every single “one more day” that God gives them.  I pray too that when they make bad choices, and when they mess up- no matter how badly- that they know that they are loved and forgiven.  I will always be here, growing older… taking on as many “one more days” as God gives me… and will always be watching them grow.  I will freak out when they are old enough that I am not cool, I will cry when they would prefer to visit their boyfriend on trips home from college than me… and I will hate when I don’t have my girls here to have dinner every night. The way I see this parenting gig we are supposed to love the growing, see the changing and enjoy it… to change things along the way that need it, to help them build the skills and have the tools- to not just live and get through this life but to embrace it and enjoy it.  I want them to love growing… I want them to appreciate the changes and the future.

Maybe my perspective is altered by the fact that my eyes will never again see my lovely Madeline grow, never hear her sing in a chorus, never buy her a prom dress or get her through a hard situation in her 20’s… so while everyone else sits back and prays for their kids to stop growing- I will stand up and enjoy the changes and the growing…

Darn days of weight watching…

So I finally jumped back on the weight watchers bandwagon… and really needed to.  I hate the first couple of days though… seriously could I be more grumpy?  Yesterday… I got a great run in and ate well all day- then had a few glasses of wine… I hope I didn’t kill that day.  Oh well- then there is today.  I am at least better prepared today… there is produce and healthy choices available.  The hardest part, for me, is trying to figure out if I am hungry or just bored… and I haven’t been as busy as normal.  Is crazy busy a good thing?  I think it might be better, if I am prepared.

Anyway just wanted to share my current life challenge/goal… my current change.  I need to get my mileage up and get my weight down and feel better… I hope this is a step in that direction.

Wish me luck :)?!?!?!?