With hope for a cure and awareness, an annual run returns to Woodstock - The Woodstock Independent - June 2013

With hope for a cure and awareness, an annual run returns to Woodstock - The Woodstock Independent - June 2013

Thanksgiving ??

So here we are, year 2 sans Hope. I faked it, made a much better effort than last year...but really it wasn't any better, it wasn't any easier. It was a good day covered in a layer of Hope should have been heres. It is I guess how they say it is, finding the ability to put it somewhere. Where? Oh who the hell cares? The world keeps on spinning... Like it or not. Finding the depth of Gratitude for life , that I once had, seems highly unlikely. I'm grateful for Patti's good prognosis, grateful for JD being home...grateful for family and friends. It's the depth of the loss though that makes this gratitude harder to proclaim. Whoo hoo I'm blessed with yada yada yada...but oh yeah my daughter is dead. Bubble burst, reality present.
I just can't say Happy Thanksgiving. I'm grateful (kind of) but not happy.
AWHIMH

Just because your child dies doesn't mean you know it all...Cancer Sucks

So I'm in an interesting position now.  I'm the friend of a cancer patient.  I'm not the mother of one.  My friend is not dieing.  My daughter was.  I was the tiger mother in full defensive & protective mode.  I am not the family member this time, I am not the tiger friend.  It is not my place to defend nor protect.  It wasn't hard to take that role with Hope, it was my destiny.  It was my role.  It was my life.  It is hard now, with my friend, not to take that role. 

I didn't know what I wanted from friends then.  She doesn't know now.  I didn't know how to share with my friends the intense fear and gut wrenching emotions I felt.  I expect her to share with me because I know.  I get it.  But I don't, get it, do I?  I'm frustrated by the fact that I've been shut out and yet I am famous at the shutting.  I didn't like the attention that Hope's cancer and death brought to us.  I longed for the days when we were just us.  She doesn't like the attention her Cancer brings to her.  I know how I felt and why I felt it but I don't know what she's feeling and why she feels that way.  I want to help though.  I don't want to be shut out.  I don't like not being in the know. 

I'm an expert at me, I know what feels like to be told your daughter will die, most likely in the next 6-9 months.  I know what it's like to live those months with a deep ache inside and a longing for it not to be so.  I've met with the funeral director and told him it will be a cold day in hell before we hold a 2 day "celebration".  I know what it's like to live for the past 605 days wishing on some of them that I could have gone with her.  I've been around the block, but the funny thing about all of this I don't know one lousy thing about what my friend is going through.  I don't know what it's like to hear that I'll need both of my breasts removed. 

Milestones

I've decided to write here because the care page just doesn't seem a safe place to rant.  Who ever said that grieving got easier after the 'magical' one year anniversary was CRAZY.  I've decided that with each milestone Hope misses I start the process, in some ways, all over again.  You see with each of the things your children are doing it's just one more thing my Hope is not and damn it she should be.  I think this could be true of many of my grieving mother friends.  I mean certainly Lisa thinks of Benny and what he should be doing and I'm pretty sure that Christy thinks of Lindsey in this way.  It's like this constant recycling of my grief. 

I can't get over how tough even the small milestones are now.  Birthdays...her friends are all now 14 & 15.  She is forever 12 & 3/4.  Her first homecoming has come and gone.  The JV Conf XC meet is today, she isn't.  Auditions for premium blend were last week, this was truly one of her dreams for freshmen year and she wasn't there.  So here is my problem...when your circle of friends was wrapped around the life of your child how do you maintain the friendship without the constant heartbreak?  How do you be gracious and loving and supportive of their children as they grow up and yours doesn't.  Cuz here's the thing...don't invite me or don't include me and I feel hurt and left out.  Invite me and I feel hurt and left out.  It's a lose, lose situation for everyone involved. These should be happy occasions right?  Birthdays, homecomings, successful auditions...and yet if I am present and unable to pretend I stand to put a black spot on the day.  Not what I want that's for sure.  Everyone else' s life goes on and well mine does not.  Hope was just starting to face life as a more independent girl, she was beginning to reach for the stars to be who she would be. 

The strangest things make me cry

So here is a new one for you.  Deodorant made me cry.  There are still little physical bits of my life with Hope out and about at our house.  I am not ashamed to admit that I sleep with Froggy every night.  Froggy was Hope's favorite green friend.  It doesn't smell like her anymore.  Her favorite messenger bag from one of our vacations hangs in her bedroom.  As the steroids began to steal Hope's freedom from her we decided it easier to have items that we needed in multiple locations.  So we had lotion in the bathroom and bedroom, lip balms and deodorant.  We had some in our overnight bag for the times we traveled, you know the drill.  Well I've just about finished the last of the deodorants we shared.  That is how many we had, she's been gone for over 400 days... and I haven't bought deodorant.  That's kind of funny don't you think?  I am sad that one more thing that touched her skin will be gone.  Even deodorant.

"Grief changes shape.  But it never ends.  People have a misconception that you can deal with it and say "it's gone and I'm better.  They're wrong!-Actor Keanu Reeves whose daughter was born still. A quote from Compassionate Friends.

Easter

So here I am spending my worship time with Hope at her spot. I've been doing some journaling & trying to work some things out. I quoted CS Lewis on FB last night and the two sentences that keep playing in my mind are these:"I find it hard to take in what anyone says. Or, perhaps hard to want to take it in." I won't explain this clearly so I apologize in advance. Words of wisdom, comfort, even scripture Ive found I don't have a very open heart to, I guess I don't want to take them in. If I let them in will I feel less pain, less Hope (my Hope - not the definition), and then will I really begin to lose her? If I let go, begin to forget will she be gone forever? If I don't keep her front and center who will?

I guess it's true how will I keep her in my heart if I allow words of comfort in? Thomas Kempis wrote " for when you think He is a long way from you, he is often quite near." Well that may be true, I'm pretty certain it is but He isn't who I want near & I want what I want. I know how that sounds but writing it here doesn't make it the first time I've thought it. I don't know who I think I'm punishing? If I can't have Hope I won't let anyone in? In my head I know better ,nothing will bring her back.

With the help of good people I am often pointed in the 'right' direction like if you read the Easter gospel from Mark. Jesus says (I'm paraphrasing, probably poorly) do not be afraid I will meet you in Galilee. That's where the women feel safe, I'm not sure where I feel safe any more. Not in public, work, social settings, church, even in the company of family I feel vulnerable. I'm not talkative anymore, I really could stay at home in my "comfy" pants 24/7 & I'd be ok. Sometimes I think I'm the least empathetic most selfish person ( I'm no fishing for compliments here)because I hear things that I once would have found tragic and I think " oh get over it pull up your big girl panties & get on with your day" . Yet with other families constantly facing what we faced I am so concerned with lessening their pain. I don't like this because I know that pain & grief are relative & everyone has theirs to bare. That shouldn't make me want to rank order them in my mind.

Yeah I've lost my focus, the sun is warm and there are birds singing. I should have brought tissues! I love this spot but it's so open that I feel exposed idk maybe that's a good thing. So here is a quote that my head believes but we need to work on that heart thing " you are never alone. In your heart of hearts, in the place where no two people are ever alike, Christ is waiting for you. And what you never dared hope for springs to life", Brother Roger of Taize. Think about that...
Always with Hope in my heart
Deb

Memories Year 2

Everytime somebody mentions something that took place during Hope's fight but much more so after she died, I often have no memory of what is being talked about. Over the past two weeks I've been flashing back to our days in Apt 413. I have had vivid memories of some of the most difficult days although none were without some bit of action. I was so worried someone would do something to keep her alive that would bring her more pain only at our benefit of having her a little longer. Yet while I worried in the deepest darkest most private space in my heart I wanted nothing more. I mean what if Dr. Stew had been able to get her back to baseline? We might have come home and had many good days. In the end it remains the same outcome but...

The second year first 6 weeks have not been better. It seems that in one way the numbness may be wearing allowing painful memories to come washing ashore. In another way the denial/reality of her loss is bigger by the minute. A friend remembers talking about Hope's journey as Jesus' journey/stations of the cross. She had to go through the pain in those last days on her way to heaven as if she needed to prove to herself she was ready to go and give in to the light that was being sent her way. Memories are a strange thing so comforting and so painful at the same time.

Sara asked me what Hope's favorite part of Easter was? She was a spiritual child and she loved her God. She was shocked that Jesus had to suffer for her, for us. She was very serious when
she talked about her faith. But her favorite part of Easter? Putting her pretty Easter dress often with gloves and hat. Next favorite, the egg hunts at home, rob & Jodies, & Grandma & Grandpa Fuller's. She loved Grandma Fuller's lamb cake. Mimi & Papa were famous for their
baskets. She and Grace had me holding egg hunts in the back yard for weeks after. Hope was a celebrator of all things great and small. She loved to cook and wanted to be in on the action, except for clean up, nobody likes that.

Another thing I can't keep straight are the ages of her friends. Since is 12 (nearing 14) I
think of her friends as being 12. I really have to stop and think, most of her friends are 14. They are light years away from the girls & boys they were when she was diagnosed in July 09 . I am desperate to feel her , in my dreams
, by my side, in a sweet smell. I miss you Hope Fuller.

As for my job I am heading back to my 'roots'. Lots of things have happened recently in my work life that have reminded me that I am not untouchable. Long time employees are as expendable as any others. Loyalty doesn't mean as much as one would hope. In the end this is
NOTHING. Il be fine, I will do my best and I will be fine. Hope attended this school for 1st grade, maybe those memories will bring me peace.
Always with Hope in my Heart
Deb