It’s Been Awhile

I have gone back and forth on ever posting again, I finally realized that posting was both helpful for me in getting my feelings out there, but more importantly to keep Con’s memory alive, to remind people this happens, because awareness ultimately leads to funding and hopefully a cure, meaning no family has to endure the pain we are.  The whole world has moved on around us why ours has stood still, time does not heal, in our case it has only made the pain worse.  I am not sure there are stages of grief when losing a child, we just feel a suffocating Saddness and utter disbelief that gets worse and more intense each passing day, not better.  Neither of us are angry, we just can’t believe this happened, that kids get cancer, that when they do, most ultimately die (despite what the media may lead you to believe) and that it happened to our perfect baby.  It has become painful to watch videos or even look at some pictures it just reminds us how wonderful he was and how unfair this all is.  We never know what will set us off, but I can give one piece of advice to anyone we might encounter, don’t ask us how we are doing despite what any expert may tell you to do, if we want to tell you, we will, unsolicited, all asking us how we are doing will accomplish is setting us off at a time we most likely don’t want to, or a fake answer that will ultimately make us feel like crap.  What I do know is I hope to one day soon figure out how to make a difference in this war against childhood cancer and honor my sweet boy, just the other day I was considering starting a charity on the side, that would help kids inpatient really celebrate the holidays since the hospitals often fall short, as they did last year on Halloween for Connor, he never got a “real” Halloween and I never want another mother to feel like I do, but I am not sure that is my calling, need more time to think about it and if emotionally I am ready to jump back into the world of childhood cancer.  Other than that we have been focusing on our sweet, sweet girl.  I hate to say it, but while grieving her brother she is also thriving, she definitely got left all the best parts of his soul.  She has started eating again (she went on a hunger strike when Con got sick that got worse and worse to the point where she would not really eat anything the last two months of his life), is patient, listens, shares and overall sweet, we are so blessed to have her, she is our light and worth living for.  Every morning she gets us out of bed, we see how amazing she is and make a choice to give her the best life we possibly can, we know that is Con’s wish and legacy, she was the person he cared about more than anyone else, she was his light too.

So a little of Claire Bears adventures since we last updated:

Went to Land of Make Believe and she missed her best friend going on the rides with her (mommy and daddy have had to fill in):

   
   
Spent lots of time at the Brookside Beach with Jimmy!

   
 
  

Went to the Crayola Factory

  
The spray park

  
Tried to see the balloons (without much success)

  
Learned how to go underwater

   
 
Loved her first dentist appointment

   
   
Baked a cake with Aunt Cel

   
   
Learned about water balloons and guns and that Daddies make the best target!

   
    
    
    
 
Enjoyed the hot beach, especially “hugging Connor’s friend” and making “sand Angels like Connor”

   
    
    
    
    
    
    
 
   
 
Learned how to hang from the rings “like Connor”

  
Ate ice pops

  
Took her first gymnastics class, and LOVED it!

  

Got her face painted for the 1st time like the butterflies who hang out at “Connor’s playground” whenever her cousins visit!

   
    
 
And lastly, put a smile on her Mama’s face everyday with her sweet hugs for both her Mama and the pinwheel she named “Connor” during our daily visits to him at “the garden” (what a cemetary looks like through the eyes of a three year old)

   
   

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4 thoughts on “It’s Been Awhile

  1. Not having Connor in your home will never feel right. I cannot fathom the heaviness that comes from having to visit Connor in the garden. I picture your heart and life fragmented in two. Never to be healed.
    You will find your place and way to help others. It may be hard to keep waiting to act since I know you have so much to change. Trust what I know that you WILL be a voice & a force so just keep learning where you want to be. There is no map, but you and Casey are finding your way.

  2. Erin, having never been in your shoes, I am at a loss as to the words to say. My heart aches for you and all who have lost a child. Having followed your blog throughout this horrible experience of yours there is one thing I do know for sure…..that you WILL make a difference in this world regarding childhood cancer. You may not know what path you will take or when, but you WILL. And you will know it when the time comes. Your angel will guide you.
    As I began, I don’t have the words to say that may help you as you experience each day and each emotion, but I have a friend that lost her son of 33 years last year. She just so happened to post the following to FB. It was the first thing on my page right after reading this blog post. I know she would want me to share it with you. I hope in some small way it helps along your path………….
    “So… Indulge me for a moment .. Earlier a friend called crying that a friend of hers had died and she didn’t know what to do… My first thought was to scream “your friend died and you don’t know what to do??? “Try losing…. Then you tell me wtf to do.. But I didn’t .. My anger at the universe this past week has been unrelenting .. But this what I said…I wish I could say you get used to people dying but you never do and I don’t want to. It tears a hole through me whenever some one I love dies no matter the circumstances.. But I don’t want it to ” not matter” I don’t want it to be something that just passes . My scars are a testament to the love I had and if the scar is deep so was the love .. So be it..as for grief it comes in waves when the ship is first wrecked you are drowning with wreckage all around you.. Everything floating around you reminds you of the beauty and the magnificence of the ship that was and is no more and all you can do is float. . You find a piece of the wreckage and you hang on for awhile .. Maybe it’s a happy memory or a picture or maybe it’s some one else who is floating but all you do is float to Stay alive. In the beginning the waves are 100 feet tall and crash over you without mercy . They come every ten seconds and don’t give you time to catch your breath.. All you do is hang on and float…after awhile maybe a few weeks or months depending the waves are still 100 feet tall but they are further apart.. They still crash over you and wipe you out .. You never know what will trigger those waves.. Maybe a song , a picture, a street intersection , the smell of Starbucks or flying into Elmira Corning airport .. It could be just about anything but in between these waves there is life. Some where down the line and it’s not the same for every one the waves are 80 feet tall or maybe just 50 feet and while they still come they come further apart and now you prepare yourself.. You see them coming.. An anniversary date , a birthday , Christmas and when they wash over you . …You know again some how some way you will come out on the other side alive but sputtering soaking wet hanging on to some tiny piece of wreckage .. Trust me the waves will never stop and some how you really don’t want them to, you just learn to survive them and more waves will come and you will survive them too.if you are lucky you will have lots of scars from lots of love and lots of shipwrecks ….😘😘😘”

    You are always in my thoughts and prayers.

  3. When you share your experience… so honestly… you help others understand the unfathomable. Thank you.
    I hope you take time to float for a bit before jumping back into the fight for children against cancer, although I know you will become a powerful advocate in time. You so deserve the time to enjoy that stunning little girl…

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