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.

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…

In the clouds.

I am on top of the world, so to speak, in a tiny plane above fluffy white clouds.

I think I could stay here forever.

The clouds and the sky and I feel oddly at peace and calm… I don’t often feel this way.  It makes me sad that this is only a 30 minute break in reality, only about 30 minutes to sit in the clouds.  For of course, as always, real life awaits.  I am looking forward to seeing my 2 lovely ladies smiling at me and hug my tall handsome husband… but at moments like that it is ever so apparent what we are lacking.

So for now I sit, take on the calm, enjoy the peace and soak in the clouds… reality will bug me soon enough.

 

… and I am off!

Currently I am sitting on a plane in Newark, NJ waiting to head out on the second part of my very first ever flying trip alone.  How invigorating and surreal… a real adventure.

I used to joke that someday I would get an all expense paid business, but my ‘boss’ is pretty cheap (husband)… but here it came and I got a weekend to disappear.  I needed a disappear.  My best friend, who just moved to Cleveland, just closed on the house they built and really needed a friendly face… and I took it as an opportunity to just ‘go’.  So my husband said ‘yes’ and I got me some plane tickets… and I there I was on a place to Cleveland.

I know I needed an away- a disappear, for when I am home (at my house, in my environment) I am working, coordinating, picking up, dropping off, emailing, playing, feeding, and doing approximately 1,000,000 other ‘normal’ things.  So today I was glad to be on my own little adventure, doing something I had never done… and breathing.

I think one of the coolest and best parts is being completely anonymous in a crowd.  Being surrounded and alone- but in a different and good way.  No one knows what a year it has been, no one wants to console me- completely anonymous.  I sat in huge spaces full of people who don’t know I am ‘Maddie’s Mom’ (not that I don’t love that I was Maddie’s mom), who don’t know anything about me and it was great to feel that.  Maybe I needed simple and to back away from the traditions, stress and excitement of this time of year… let’s hope this adventure helps me… helps me move, run, smile, laugh and live through the upcoming months.  I know that parts of this process are changing… events and dates and memories are starting to blindside me…

Advice (for all who encounter a person who lost their lovely special child)

I have seen a ton of posts and articles about what not to do or say and how to approach a person who lost their child… I was on a plane Friday night reflecting on the events in Newton, CT… and I sat down and hand wrote this list.  These are the things that I KNOW from my experience don’t help, aren’t supportive and are not the things to say to someone:

  • Do not tell this person or family who lost their child you know how it feels (unless you have lost a child and then follow your rules and help them)… thankfully most people have no idea how it feels or what the world looks like for them now.
  • Do not be the person who works to be associated with the person who died or the tragedy that happened… does it matter if you are so-and-so’s cousin’s best friend?  Unless you are working to help the family and the association is needed or of course you are grieving (but that can be quieter and less Facebook official)… just pray for the families and support their efforts to change the world or keep their special person in memories.
  • Do not expect anything from the mourner… and don’t make them feel guilty if you aren’t the person they chose to share or hug or be around… don’t bug them with texts, calls, messages… don’t act surprised if they hug and console you and don’t cry… don’t expect it to get better or easier in a year (or any amount of time)… just don’t expect anything of them- just let it roll the way they need it to and be there when they ask.
  • Do not forget their lovely- put their name in the cards you send and remember their birthday… find a way to include them in what you do… my biggest fear is that the world will forget my Madeline (the Christmas cards that didn’t have her name felt like a blow).
  • Do not tell them how hard it has been on you, or that your child has been taking it badly and is very sad… they can not carry your grief on top of their own.
  • DO NOT EVER EVER say “Everything happens for a reason”… “Now they aren’t suffering”… (or anything that kind of fits into those).  There is no reason it was my lovely and not yours- no reason.
  • Do not tell everyone in the world how tightly you will hug your little ones and how much you love your own perfect little family tonight … because it freaking stings.  It FREAKING hurts… it rubs salt into a huge and gaping wound already there.  Please refrain from saying that and posting it on Facebook…
  • Do not say “time will heal your wound” or “time heals all things”… something’s don’t ‘heal’… eventually I believe that my ‘wound’ and pain will become a part of my normal-not even gone.  How could 1/3 of the best and most perfect set of sisters be in Heaven and not here for me to see grow, touch, snuggle… and that can ‘heal’???
  • Please don’t (now and as time goes on) talk or tell this person about your child or children that are reaching all the milestones that theirs should… even pay attention when you are in a group talking to a bunch of others… find another subject.  We are already aware that yours are losing teeth and writing notes and reading books and graduating from kindergarten… and though we never wish our journey on you it kills us to know what our lovelies aren’t doing… growing, laughing, smiling or learning…

So, I am sure I could keep going on and on, but this is a good list.  I guess it is a list in hopes that you will never have to be the one to compose a list, that you will never know what a parent who has lost their child feels about situations and words… and also that you are more aware (in my experience) of the things that trigger or cause pain…