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.
Thursday, April 28, 2011
Sunday, April 24, 2011
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
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
Friday, April 22, 2011
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
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
Tuesday, April 19, 2011
1 year 1 month & 9 days later
It's almost May again, Brain Tumor Awareness Month, and I hope you will all participate at a serious level. I hope you will wear Gray &/or any Hope t- shirts you have, I hope you post and re post on your social network sites, I hope you host your own fundraiser, I hope you create your own awareness campaign, I hope you seize this opportunity to push your local media outlets for coverage of brain cancer awareness.
This has not been my most productive work year. The reality of our loss and the depth of the despair I feel has at times limited my ability to see the light. My current position has been eliminated and the first position I interviewed for has been given to someone else. Most of you know I don't prescribe to the 'everything happens for a reason' philosophy. I do know that no matter how badly I sometimes wish I could have gone with her I could not. I have a son to finish raising and a husband to love. This job thing is just one more speed bump on the highway of life. I've already lived through the worst thing a mother could live through so while this is discouraging it is not what it would have been 5 years ago.
Back to the month of May. With JD graduating and all that goes with it, I fear I am not up to the fundraising/awareness that I was so proud of last year. Add to that all the things I think Hope should be doing that she is not and my head and heart are swirling. The ocean of grief is angrily reminding me tonight that swimming to the other side just isn't possible. It's about treading water and not drowning these days. I'm an angry green monster jealous of all the healthy 8 th grade girls getting ready for the dance, the trip to Springfield, the registration for 9th grade. The meets & concerts. It all is one painful reminder that my girl was robbed of her life so quickly I can still hardly believe it was real. 224 days until she died and 405 days later life is just plugging along. Well most are, not so sure ours is. For us it's kind of like going through a tornado and now wandering through the debris that was one your home. Your life and knowing that nothing will ever be OK again.
Always with Hope in my heart
Deb
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