His song, to me, feels like a letter from my daughter.  It is a connection.  I know that many other parents who have lost a lovely feel that same connection.  Thank you Zach.  Thank you for living and singing and enjoying and sharing and creating such amazing music.  It has changed me.



Zach and the world he left.

Zach is an angel.  This has made me so very sad these past two days, but also so glad to know that he is ok… even better than ok.  He made it his mission to live life fully, happily and exactly the way he needed to before he died.  He lived while he was dying.  The words in this video, if you took the name Zach out, would describe Madeline.  She was amazingly special and kind and compassionate and real… Zach was the same.  He was created to live a life that reminded people to love each other, live simply and kindly, enjoy each day and look for the good in situations and people.  He was an amazing person, who is changing the world in the way he lived and the fact that he is now dead.

I have never met him and I miss him… My heart and brain have been chugging along thinking of his mother’s pain, his siblings hurt and his fathers sadness… I know the hard they feel.  I also know the feeling of knowing that your lovely and different and amazing child changed the world.  That your child made people believe and know and feel and live… but I know the pain that goes with this.  I know the killer hard that comes when you see that your baby is gone and the world can change but you are stuck.  Enough of my babbling… enjoy and think and listen and change.  Smile and cry.  Let Zach change you.


The ‘BAM’ factor.

Standing in my living room… folding laundry, looking out the window… looking at a pair of knee socks from Land’s End… ‘BAM’.  It hits me, these little blue socks with apples on them will never touch Maddie again.  ‘BAM’ … Maddie is gone.  Sometimes it hits hard like a ton of bricks and sometimes it is softer.  Today it was just hard.  Imagine all of a sudden remembering your daughter is dead… and that forever, for you, is without her.  I hate that to visit, or to feel like I visit, Maddie there is a spot and a stone and no Maddie.  I hate it.  I can’t fathom a forever with out her.  Isn’t that strange that my brain and heart still don’t know that she is gone… I think some part of them both moves and lives like she’s here.

Reality is an important and terrifying part of this.  Some days…  I would love to lose my numb… and others I wear it like a jacket and it keeps me warm and alive and functioning…

I miss you darling… in these rainy, stormy and balmy days I miss you… but then again I miss you in the cold, the bright, the dry, the sunny, the dark and every single moment.  Forever is long.  Reality Sucks.

My 4 year old baby.

Tomorrow I will wake up and it will be the 4th anniversary of my last lovely Musto Chick being born… I can not believe it has been 4 years since I had my own tiny, fresh baby.  I miss those tiny toes, the little noises and the smell…

Where did those years go?  I mean honestly, I know where they went.  They went to living, sleeping, growing, learning… to life.  They feel like they have moved so fast.  Lucy has had a fast grow up, probably faster than most.  How many kiddos have her story… many but it isn’t the norm.  Looking back I have lots of memories of her… lots of moments in my brain, photos to see and videos to watch and hear.  She is so flippin’ cute.  She is so unbelievably smart… she is just Lucy.

Lucy at 4 is so excited to be bigger, to grow.  She can’t wait to be grown and drive, and tells me “mom don’t worry you will still be my mom when I am big, you are old and you have a mom”… pretty deep thing for a 3-year-old!  Lucy, by nature, is my comedian, my stubborn little comedian.  Good luck trying to get her to do something she doesn’t want to.  I will say, though, she tells a ‘why’d the chicken (or cow or pig) cross the road?’ joke like no one under 5 I have ever met… and it often covers all the good stuff- poop, pee and farts.  She is so silly.  I love her.  She knows when my heart hurts and she will walk up and kiss me or smile.  She talks about Madeline, comfortably.  She loves, loves, loves boy things… but sometimes shocks me and wants to wear a dress.  She will go to bed at 6 just to not have to eat something that she ‘hates’ before it touches her mouth.  Someday she is going to stand up to some pretty big bullies and she will change them, I am sure of it.

I love me a little lucybeanbutterbutthead… I love her to pieces.  I love her hazel almond-shaped eyes and great smile.  I LOVE her deep and catching laugh… you can’t help but be happy when you hear it.  I love her random knowledge that no 3-year-old knows… about animals, superheroes and events.  I love her fat little fingers.  I love how she runs with little fists :)… I love that she loves to wear Maddie’s old running sneakers to run ‘super fast’.  I love that she will catch worms and play with them forever.  I love that she will work VERY hard… she built a freakin’ playground!  I love that anything she paints will become brown or black… eventually.  I love that at the end of the day, I go tuck her in, grab her big cheeks and give her a kiss and say “best Lucy ever”.  She grabs my big cheeks, gives me a kiss and says “BEST MOMMY EVER”…

Happy Birthday lovely, crazy and spunky Lulu.  Happy Birthday my darling.

Be gone clutter.

Chaos brings chaos.

House chaos brings brain chaos which brings schedule chaos… and eventually, in my life, a breakdown.  I must bring order from chaos to be able to pay attention to these important moments and memories and pieces of my grieving.  I always feel like I have to prepare, or nest, in order to let myself explore or feel many parts of this grief work.  To most that sounds strange or weird even.  Honestly, as I write this I think some might find me crazy.  Eh, but who cares… like I always say I do what I have to do to survive… sometimes that sounds like crazy work, sometimes it is putting it away for another time and sometimes it is jumping in all the way and letting my mind think, assess and remember Madeline… let me heart feel all the hurt… let my brain calculate all the missing it has done and let my hands not feel her hands or toes or hair.  I can not do this type of grief work in chaos.

I have been working to bring order to my house… in hopes I am sure that it will magically ‘feel’ like my home again… also to prepare for the day that I crawl into my garage attic and pull down the totes at the other end and open them.  I need order to look at Madeline’s backpack again, to sort through her clothes, to touch her water bottle… to open things I have not had the chance to since I put them there.  I need order.  I think I need the order in some way as a form of respect for the priceless and lovely items in the totes but also so my brain wrap itself around only the items and job at hand… and not be sidetracked by a pile of laundry, dishes in the sink or a dirty bathroom.  I feel like I am almost there.  I feel like there are few areas that need me to clean and organize and focus and that the important and exciting and terrifying process of doing this job will happen soon.  I wonder what I will find… I can’t remember all the outfits she loved and would wear… or what might be in her backpack pockets… is her homework in the folder?  Does her water bottle still have her marks on it?  I wish I would open that tote and get a clear and perfect whiff of Madeline.  The before smell that I can not remember… not the smell in the hospital.  I wish I would open it and have a full memory of her in an outfit that isn’t pulled from a photograph.

So for now I chug along, bringing order to my chaos… searching for a home and preparing for this important job.  For now I wonder what it will feel like…


Just a walk. Just what I needed…

I got up WAY to early today… I had a run scheduled with a friend but after getting up and dressed and waiting… I got a text that she was too tired.  I was quite annoyed at first, only because she got to go back to bed and I had already been up and waiting for 20 minutes.  I could have gone for a run, but I was so tired and sore that I didn’t really want to.  So I decided to go for a walk.
Seriously… when was the last time I went for a walk by myself.  I felt like I wasn’t doing enough work or sweating… but I made myself just walk.  Often when I run, with friends or alone, it is full of noise.  I listen to music or talk or listen to friends talk… never quiet.  This morning it was nice and quiet.  There were a ton of bird and running squirrels and not many people out.  I walked over to my daughter’s school and sat.  This week Madeline’s tree went in near the playground… and I walked over and just sat near it.  I made myself turn my brain off for a little while and just sit.  I want to stop thinking of all the important things I need to do and all the junk I have to pack into this day… I even did my deep breathing things I learned in yoga (hoping no one was watching).  I just sat.

I miss long walks.  I love to run but I feel like everything in this life has turned into runs not walks.  We zip from one thing to the next and rush and rush… I need a slow down.  I still need kick-my-butt-mind-cleaning runs, but I need more walks.  I need to be kinder to myself.  I need to move without thinking about it as a workout… I need to live without always running.  I need to be nicer to the lady I am today… she is doing the best to take care of her family, mind, body, home, life and soul… She needs to stop thinking everything needs to be fast and sweaty.

Once again I am going to add something to work on :).  Have a lovely day, mine is full of Mother’s Day Teas and weeding… and hopefully a date with My Very Own Mr Musto.


Be a change.

Honestly.  So many of these moms and dads and sisters and brothers sound like my brain, my daughters’ brains… I am passing this on.  Please be changed.

Pass it on. Pledge. Petition.

Children should not have to do this… they should never HAVE to take poison to get better… they should not feel this pain… they should not HAVE to lose 60-70 years of their future living… Life shouldn’t be taken from them.

I miss you darling.  I wish you were here… but will help do this. 


5 1/2

 May 2

Amelia turned 5 1/2…

An age that is terrifying and happy for us… I don’t walk around thinking she’s not going to make it to 6… I don’t see her dying at 5 1/2… I just don’t know what comes after 5 1/2.  I am glad to get to see Amelia grow and change and learn… To get to see her graduate from kindergarten, to get to see her lose her first tooth, to get ready for first grade… But its another way that she is passing Madeline.  Madeline was the one God made to be the oldest sister… And pretty soon Amelia will, in a way, be the oldest Musto chick… Strange new reality we live in.

I am so very happy to see Amelia beam when telling the world she is 5 1/2… in her eyes she is equal with Maddie right now.  I guess in a way it’s a connection that she makes to Maddie.  I hope she enjoys this little connection and that she has a connection to all the ages and events that Maddie will have to be in her heart only for…


I am sure just as with every other milestone and life adventure that Madeline misses we will move, live, cry, smile, laugh, run and grow…