Go GOLD in September!!!

 

CRCCC

As strange as it sounds it has taken me a long time to see Madeline’s sickness, diagnosis and death as cancer.  I mean, honestly, who wakes up one day with a lovely lady… takes her to the hospital and learns that she has DIPG, a rare inoperable and basically untreatable brainstem tumor, and BAM she is gone 5 days later.  No one really.  To me, Madeline’s death sat closer to a car accident or something fast and shocking and tragic.

When I think cancer I think… treatment, chemo, radiation, counts, sickness, nausea, hair loss, tired and time.  Madeline left us in 5 days… no treatment, no chemo, no counts, no hair loss… lots of tired and dizzy and nauseous and different- but not cancer.  It was, however, a rare and terrible and under studied cancer.  It was a primitive, mean and forceful killer of good cells.  It was Pediatric Cancer at it’s worst.  It was definitely cancer.

How the hell did I not know that Pediatric Cancer was like this?  How, in all of my years of living, schooling and parenting, could I not know that this existed?  I didn’t know so many pediatric cancers existed… I was very unaware.  I am still, in a way, unaware.  I don’t like to know a lot about all the types… I hate to hear neuroblastoma, or sarcoma… those are big killers.  I don’t focus on the name and the prognosis and the treatment.  In my experience I don’t care- cancer in a child is cancer in a child.  It will hurt them, change them, mess up the ‘normal’ in their family and cause their family to carry fear they should never have to carry.  I hear, “A child has cancer… ” and I skip right to, “how can I help?”… prognosis and treatment and time and details don’t freakin’ matter.

I am very focused and inspired to work with an amazing group of families changed by Childhood Cancer and Foundation’s for some of those kids lost… we are working to change so much of this.  We are strong, honest, genuine, creative, moved people who will make a difference in Childhood Cancer.  We are committed to help raise awareness, to use our resources, energy, time and talents to tell as many people as we can to Go GOLD in September and support GOLD…. we are here to help families who are in various stages of hearing the words “Your amazing, young and beautiful child has cancer.”… We are all here for the same reason.  We will change this.  We will.

Please visit this site and help support us as we work toward our mission and we share, support and raise awareness… please share your stories… I never thought I would be a mom to an amazing, kind and compassionate lovely who died because of a Childhood Cancer.  I am changed.

http://crccc.co/

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Searching for anything.

I struggle daily with the search for something, anything, really that resembles a feeling.  Isn’t that weird?  To desire the ability to feel?  The past few months have kind of shifted me back into my numb place.  On a logical level, I understand that there are too many layers to process, to many life happenings to make sense of and too many similar events to losing Madeline.  These events kind of mimic the loss of Madeline… loss of a little friend, changes in my house and just plain me trying to find a feeling.  It is driving me nuts.

I am really not used to not feeling.  I usually feel everything.  I feel others sadness, others happiness… their guild, anxiety, fear, excitement… all of those things.  I honestly feel no ones anything anymore.  I get rare glimpses of happy or excited… I feel a really strong love for the girls and seeing them happy and content… I feel pain when I know they are sad or hurting… I hate it.  Imagine not feeling anything?  To look at your husband, to have gone through this terrible loss and not feel anything… I know on a different level I feel ‘love’ and ‘safe’ and ‘content’… but really nothing.  It is hard.  It is confusing.  It is messy.  In this big pile of life that we have been handed there are so many emotions and so much history and perspective to organize and sort through- everything is bigger- a fight hurts more, a hug comforts more, mean words hit deeper and kind words help more.  So every detail of life that has made you YOU is bigger… the problems and hard stuff is bigger and the good things about you are more important.  I don’t know if this makes sense…

It is hard to write the way that a lot of this feels when I don’t have feelings… in a way.  I know that they are there- that when Matthew is around my mind knows that I am safe and usually that is when I let a lot of things out.  I know that while sitting at Onja Rose’s funeral service I knew that I don’t want to do this with out him.  Do I feel much more than that?  No.  Is that weird?  I have no idea.  Is it my current normal?  Yes.

I wish I had a feeling.  I wish I felt more than heavy (that is most likely sadness) and tired (which is most likely sad and overwhelmed)… I love the moments that I feel happy and comfortable and content with the girls… I love to see them happy.  I love when I curl up with Matthew and feel good just sitting there… I love when I hug him and get a whiff of him and know I like him a lot.  I wish all of this were more clear… I am very sure that this is part of the ‘new normal’.

What am I hoping for?  I hope that God lifts some of my numb… and lets me feel.  I pray that He guides me and makes clear (somehow) the way… for I am freakin’ tired and unsure and keep second guessing every sign…

 

❤ darling.  Bug me.  I need it.

More beach, less work.

Here is my new summer plan… a very unplanned summer with more beach- less work.  There, I put it out there… now I must follow through.

Today we headed out on an adventure to the beach near by.  It was clean and warm and perfect… I see lots of trips there this summer.  We had a really lovely day… I forget sometimes how much fun it is to leave your cell phone sit your butt in the sand and bury your feet… or splash your little one… it was a really nice way to spend our day.  After all the hard the past few weeks have brought it was refreshing in a lot of ways to enjoy the beach.

So- head out to a beach near you and splash and play and laugh and enjoy…

 

 

A tiny, itsy, bitsy rant…

I am so not a bitter or mad person… but there are things that really hurt my heart.  These words, posts and thoughts probably sound great to everyone else.  I hate to see “I will hug my child a little tighter” or “I am so glad she’s safe” or “I thank God for my …’s health”…

I know you all think “what a heartless person”… but think about it.  Those words sting my heart to see, hear or think.  Seriously, keep it to yourself.  I know you’ll hug your child tighter- only mine isn’t here anymore.  Honestly, you are glad your lovely or friend is safe and someone else’s is hurt????… and you thank God for your child’s health- what about me????  Madeline was the most healthy child I ever knew… an amazing eater, drank milk, chose fruits, slept soooooooo well… and look at us.

I think my rant is- stop posting it on facebook.  Those words sting.  Enjoy your lovelies as much as you can… be happy… live… stop posting that.

Sorry for the rant…

 

❤ you darling.

The lovely, perfect and sassy Miss Onja Rose Howard.

Onja Rose Howard

 

It is hard to meet families who will have to endure and walk this journey… to know their pain and hurt and loss and missing and hard and everything.  It is healthy and scary and unhealthy and medicine… it is what I am supposed to do.  I could run away and hide in a hole… but I need them and they need me.  I know that they are brought here to me, and I to them.  I am supposed to meet them, their lovely… and be there before and/or after.  It is the connection Madeline wants me to make, a direct connection to her.  When these lovelies go to Heaven, I know, that Madeline is right there.  I know that there is an amazing, spunky, silly, happy, sassy, fashionable lovely getting ready to go see Madeline.  I know that Amelia fell in love with Onja Rose… and that Madeline will too.  I am sure my lovely Madeline will bring her safely home, and she will be comfortable, happy and okay in Heaven.  I hope that she bugs her mama a lot, and lets her know she’s ok.  I hope that Madeline let’s me know too… I freaking miss her.

Let me share a little about Onja Rose Howard… man she is strong.  This little lady was diagnosed in October of 2012 and given a tiny chance to enjoy Christmas… she rocked Christmas… she made it to her 3rd Birthday on July 3.  She is 1/5 of an amazing and wonderful family.  She is fun, sassy, cute, fancy and shiny… she is Onja Rose Howard.  God made a special little lady.  I am so blessed to have met her and her mama… I am so grateful to have Nicole to travel this journey with.  I hate that she joined this club… I hate that Onja had this hard, this pain… She will be perfectly okay and at peace in heaven.  God is good like that… and believe me God is good.  So put Miss Onja Rose and her family in your prayers… pray that she is comfortable and that she is with her family for as long as she can be… pray that her family is taken care of and that the only thing missing is Onja… pray that God covers them with serene numbness and peace and that the world respects their wishes and needs.  Pray.

 

I love you darling… take good care of Onja Rose.

A pile of Musto’s… a big messy pile.

What a confusing new life this is… to have to sort through feelings while being numb… I know that one is deep and hard to understand.  It is so hard to put into words some of the situations and reactions and heavy and numb that are a part of this life.  Some days I wish I could rewind 13 years ago… to have kissed Matt and that it just wouldn’t have worked then- it’s my cowardly way to deal with the ‘now’.  It’s my wish to not have had to live through all the piles that God keeps putting into my life… seriously doesn’t a girl deserve a flat, pile-less and lighter year?!!?!!  I know that the coward walk back through history would not make everything better… I could be in a terrible life with no means to enjoy time and no lovely little Musto Chicks… but man it is tempting to think if I could just go back and change that I wouldn’t be stuck in this hole.

What, you probably wonder, is this hole full of?  hard, heavy and numb… a confusing and hard marriage, to my favorite boy… a sense of loss of me- with no hope of finding her soon… the fact that lurking around every corner is something to bite me in the heart- a song, a memory, a realization that Madeline is really gone… 2 girls who I need to carry through this and keep them safe… my angry and sad and mad self that life is not fair and will never just go my own way… my wish, sometimes, for a way out of my skin… what is really inside this hole is a pile of Musto’s trying to find our normal, trying to find ourselves, trying to look into a future- when we can’t see past today… a big pile of messy.

Where the hell is the broom!?!?!?!  I am a firm believer in perspective, in everything looking different when you have time to look back at it.  God loves retrospect.  I am constantly reminded that He has the plan books, He sees the future… we are just here living in a now.  I am really just asking Him to start guiding me, in a clear way… to starts softening the bites to my heart.  I am sure when I can reflect on the past things will look so different… like Matthew always says ‘hindsight’s 20/20’… I will keep reminding myself of this…

 

Miss you darling.