new year?

Today feels very little like a new year or new beginning to me… in fact it is overwhelming how heavy today is.  As we walk into January… and I remember and remember all the differences between this January and last…

One year ago, right about at this minute, I was finishing straightening my hair and doing my make up to take the girls down the street for a little neighborhood New Year’s Eve party.  I heard a big “OH NO” from the kitchen and then turned my head and saw Amelia puke in front of the bathroom door… and our night was changed.  It was a nice and simple night… a set of sisters, seltzer in plastic wine glasses and a nice movie kind of night… a happy New Year. 

We welcomed 2012 with lots of hope, excitement and plans… little trips, weddings, big birthdays… little did we know that February would come.  Honestly, it is still shocking to me that a month after that night our lovely was officially dieing… officially diagnosed with a terminal disease… our 5 1/2 year old silly, vibrant and amazing little girl was going to be gone.

Still shocked.

I don’t know what 2013 has in store for me, for us, for my girls… for my life.  I do know that there are a lot of obstacles to overcome this year, next year… forever.  I am pretty sure I will keep running, moving, driving, playing, crying, laughing, thinking, growing up… mixed with a healthier mix of eating better, taking more ‘me’ time, drinking less wine and keeping my life simpler… who knows maybe I will take a class and be anonymous…

Cheers to the official change of year… I guess 2013 was bound to come around someday.

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I freaking miss you.

As I put out gifts for your dad and sisters… there is only one for you.  I had 3 little girls last year, I had such a lovely and full Christmas… not this crazy, confusing and can’t figure out the tradition crap… Santa came early, there was no teeth brushing… stockings weren’t filled… we have this all wrong. 

I freaking miss you.  It is eating to my core.  I am empty and sad with out you.  A world with no Madeline Elizabeth Musto is not an amazing world…

Where are you?  What is today and yesterday like?  Is there a Christmas?  Do you miss me and your lovelies…???  I wish so much that you would come and bug me and make me know you were okay… but alas I am lonely. 

When will you come?  This time is horrible and hurts a ton.  Your dad and I need you to come, to bug us, to assure us that you are okay… and that we are moving in the right directions.  What a chaotic and messy life you left…

I miss you darling.  Merry Christmas dear…

Best Day Ever

December 23, 2011- There was such a real and tangible excitement as we picked Madeline up at 2:15 from her school… we were on our way to Watertown for Christmas with all of our family and the girls cousins.  We loaded up and headed out, the girls napped for a big chunk of the 3 hour trip.  We had decided to enjoy our trip home and get back when we got back, since many of our trips are bogged down with time constraints and dinners at 5pm… don’t be late, don’t be late!  So we were off on this little ‘Musto Family Only Adventure’…

We planned to stop for ‘fancy dinner’ in the middle of the trip, either in Boonville or Turin.  There are two restaurants we always drive by and say ‘someday we need to eat there’… so the girls woke up just in time to get to the second one.  Think country road, just starting to fall snow and little restaurant at the bottom of a ski slope… the Steak and Brew.  We pulled in and were the only car, we weren’t sure if they were open.  We all walked in and they looked frazzled, they asked if we had a reservation, they were waiting for a LARGE party.  The staff moved some things around and seated us in the super comfy and perfect little bar room with a wood stove (and no other families close by!!!!).  The dinner was wonderful and fancy and they doted on the girls… dessert was amazing- Cherries Jubilee prepped right in front of the girls.  The end of dinner came and Matt and I looked at each other and it was like “Whoa we can finally do this, 3 girls out to dinner and it is enjoyable”.  Madeline poked me, I looked down and she had her hands on the sides of her face and she said “BEST DAY EVER” and giggled.  I said Maddie, tell daddy what you just said… and I was beaming.

I sat there thinking of all the work involved in planning crap and parties and events- and this was a “Best Day Ever”… a simple, fun and a little fancy night with family.  I promised, in my head that night, to do this more- more simple and unplanned, less crazy and stressful… a big change in living came that night.

I thought I would have years ahead to do these things with my 3 lovely girls… to see them grow together and learn together… to take adventures and trips and to laugh.  So many plans and hopes for my girls… for I had the 3 best, cutest and most fun… I had the Musto Chicks…

 

Together and alone.

Together and alone.  Sometimes I know that’s how every single part of this goes… together with my family, my husband, my sisters, my friends… but really alone.  I don’t think most can even understand the number of levels my life has changed and will change and how much I miss the old days, selfish days… days when I can completely remember happy with my husband, or simple days with nothing to do with Madeline and Amelia, or driving, talking and being fun and young with friends… what a freakin’ heavy life this is. 

How the heck can I parent well through this, be a good wife or even care about my marriage though this, be a sister who can help her sisters through rough stuff or a friend who cares and helps and does thoughtful things… Sometimes I can not even understand how I am living through this.  Our life must be someone elses… I could not have lost my daughter, I could not be here in this moment… lift the freakin’ curtain God and show me the real now… the real life. 

There is no curtain.  There is no other now… There is no simple decisions, easy marriage tricks… no random funfilled happy days… there is just this void.  I am doing the very best I can to fill our void… with some happy, some joy, some normal, some celebrations… some living… but the void is HUGE and will not shrink. 

I hope to God, because I can’y really pray that this void shrinks… that this gets lighter and life can feel normal… I really hope…

miss you so much Mads…

A Superhero… who traded his cape for wings…

Devon

Yesterday… what a pile of emotions… so hard to find correct words and to define feelings…

Yesterday, a family we have met on our journey, said goodbye to their amazing Superhero and Maddie welcomed a new friend… a friend who had a very different DIPG experience, a friend who was older when he was diagnosed and when he took off for heaven… but I know she was glad to see him, glad our families met and her foundation got to help his family.

I feel such a sadness for his family, for just like us, we regular humans don’t posess Superhero powers or strength- nor are we blessed with all the peace and grace of an angel… our angels are okay, but we are broken.  We will have an empty to carry forever, we will have a pain that’s unbearable, we will stand and move with a numbness that is not something words can describe…

Our families are on the same journey… to find our new normal, show off our amazing young angels, remember our people… most of all move, smile, run, laugh, live and make the best of our lives with our other people.

I wish to never have another join this club… I wish it were full and there was no room for more in this club… but alas that is not the way of life and many of us are meant to find each other and travel the journey and walk down the path together…