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meant to be

May 26, 2016May 27, 2016Unravel Pediatric Cancerburying a child, grieving after 2 years, heaven, latest postanger after child loss, anger at god, bc/ad, bereaved parent, bereaved sibling, child death, child death god, child hospice, child loss, childhood cancer, connection with dead child, cross fit, crossfire, crossfit and grief, Diffuse Intrinsic Pontine Glioma, DIPG, faith after child loss, god, god doesn't answer prayers, nicholas preschool graduation, pediatric cancer, prayers, praying after child loss, preschool graduation, regrets, sibling loss13 Comments

**As I was typing the last word in this entry this song started playing.. Open it in another window as you read this.. Because I think she wants me to share her message to me, with you..** ok buggers. ok baby.. ok.. i love you. i love you. i love you I was talking with a friend today.. a new friend from my new life. My AD life.. This friends job is to fundraise for researchers.. well kinda. Her goal is really to raise money to save kids. To stop them from suffering.. from dying. . Its a big deal. It matters and it can be all consuming. The pressure can be overwhelming at times. I get it. So much. .. except I don’t. .. She asked how I dealt with it. Since we are so similar. How do I cope with that anxiety and pressure. The need to do[…]

the right place

March 26, 2015March 26, 2015Unravel Pediatric Canceranger, burying a child, child loss, childhood cancer, DIPG, heavenbroken road, bumpies, god, infertility, signs20 Comments

I wrote once about signs.. wondering if I had little hints and glimpses into this life I would one day be handed.. Today I realized too that maybe I have been in training for it all along too..Here is that journal.. its pretty incredible to me how much I seem to have always know.. without knowing.. My mom said today that she struggled with God.. but one thing that helped was the miracle that is my blog.. That He must be helping me write the way I have.. reaching out and into people the way that I have been able to. So it hit me.. this isn’t the first time I have actually done that. When we were struggling with infertility and miscarriages I was part of this forum of woman. In the beginning I didn’t know any of them.. so I poured myself out to them .. feeling safe[…]

My no into yes

February 26, 2015Unravel Pediatric Cancerchild loss, childhood cancer, DIPG, hospice, no into yes, Our Storychild hospice, CVS, god, heaven, memories, no into yes, wheelchair22 Comments

Its pretty amazing how one moment can trigger one memory.. that then triggers a landslide of them. I was at the CVS pharmacy waiting to pick up my prescription. I moved to the side where the toy aisles are and I remembered being on a phone call there.. standing right in that very spot. So incredibly mad. I was talking to a hospice nurse.. right when Jennfier was going to be getting on service begging for one seemingly simple answer. How can long can a little girl live with no food and barely any liquid. And I couldn’t get a answer. I was nearly yelling.. just tell me a number. How can you not give me a number?!?! Now I know why.. because there really isn’t one. They can last so much longer than you would ever even imagine. Jennifer was over 23 more days. .. I was so mad[…]

everything and nothing

August 11, 2014August 12, 2014Unravel Pediatric Cancerall posts, childhood cancer, DIPGanniversary, bereaved parent, birthday, child hospice, DIPG, god, heaven, her cells, mice, nanocourse, pediatric brain tumor, tumor, tumor donation23 Comments

I miss her today with all of me. I went for a run. It usually clears my head.. gives me space… But not today. I am hurting. I remember so clearly 6 months ago. Calling my sister to tell her to come.. then not come.. then come. I wasn’t sure that we needed her… wasn’t really sure how close Jennifer was to her death. But I was afraid… so she came to us. Today I am angry. .. . at everything and at nothing. I remember thinking I could never hurt worse then I did right then. I remember thinking the same thing those first days after she died. Thinking I couldn’t ever hurt as much as I did then. I was wrong. So incredibly wrong. I thought the same today. I thought I could never hurt worse than I am now. And as soon as I thought it, I[…]

…but she is

August 2, 2014August 9, 2014Unravel Pediatric Cancerafter death, all posts, burying a child, vacation50th anniversary, bereaved sibling, child death god, child loss, child loss god, child loss heaven, childhood cancer, cremation, death of a child, Diffuse Intrinsic Pontine Glioma, DIPG, explaining cremation to a child, forever 6, god, heaven, keepsake, my blog, tahoe, why I blog33 Comments

I find myself back to a place where I have a longing for my nights to come and write. I don’t know if I am in a transitional period or if it is just a hard spot for me right now. I am brimming with emotions lately.. anger and sadness.. and a sharp desperate ache for my Jennifer. I have prayed a lot lately. Constantly talking to God, just walking out to the garage to grab a bottle of juice I speak to Him. I ask for help.. . Sometimes its unbelievable to me. .. how I can feel so mad at Him on one hand .. yet still closer to Him than I have ever been. I know heaven is real. I know this isn’t the end.. but I just get so damned scared. And so I write … I release those fears through my fingers.. and then somehow am[…]

llama llama

August 1, 2014August 9, 2014Unravel Pediatric Cancerafter death, all posts, childhood cancer, vacationchild loss, child loss god, childhood cancer, DIPG, god, heaven, mommy guilt, no into yes, regrets, remembering dead child, tee ball, vacation, waiting for her25 Comments

Memories are all I have left.. Its what us bereaved parents cling to. but when they hit unexpectedly it can be devastating. I feel like I have been hit over and over again today, and I feel so weak. I rarely leave the house to run errands anymore. Her memory seems to haunt me everywhere I go. I actually wouldn’t mind it so much if it was just me .. I have no problem crying in public.. But it just isn’t fair for my kids. ..especially on days like today when the tears were fairly constant. Turning on the car.. I hear the song we walked her down the aisle to.. The only time we will have that privilege. Even just driving in the parking lots for the grocery stores got to me today. I still haven’t been able to go into a grocery store since she died.. Today being[…]

dreams vs nightmares

July 24, 2014July 30, 2014Unravel Pediatric Cancerall posts, Uncategorized4 kids, child loss, childhood cancer, connection with dead child, DIPG, god, heaven, mommy guilt, nightmares27 Comments

I am a jumble of stuff.. of emotions.. of thoughts.. Today I said to a friend “…taking care of 4 young kids.. ” then I stopped myself. I had to brace myself. Grip the edge of the kitchen counter to keep from doing what I wanted to do.. what my body was trying to do. crumble And then my friend said “you are. You are completely still a mom of 4 young kids.” And so we talked about it. How in so many ways my mind and heart are overcome with her more now than they were when she was alive. I fear sleep now. I had my second dream of her that I remember. .. dream.. i wish I so desperately want her to come to me in my dreams. But not like this.. I want her freed from the nightmare images. I want her different than the ones I can’t erase[…]

my heaven

July 23, 2014July 30, 2014Unravel Pediatric Cancerall posts, Uncategorizedchild loss, childhood cancer, DIPG, god, heaven, ingredients, make a wish, mommy guilt16 Comments

Sometimes memories surprise me.. coming out of nowhere.. and sometimes they haunt me and I cannot let them go. The other day I was driving to the post office, I realized I was on the drive I took daily to take her to kindergarten. . I used to go straight at the corner to get to her school… this time though I turned right to get to the post office to open a po box for a company I never wanted to start. Its right across the street from where her remains are now.. Just waiting for us to get her to bury her. I imagined running across the street and barreling through the door.. screaming her name. I thought a lot about her Make A Wish trip and the guilt I have attached to it. How I feel like maybe she would have chosen something different. I helped them[…]

will she

July 12, 2014July 23, 2014Love4JLKUncategorized4 months, 5 months, anniversary, bereaved sibling, bocce ball, bowling, burying a chid, child death god, child hospice, child loss, child loss god, child loss holidays, childhood cancer, DIPG, god, heaven, hospice, library, picnic, tonys work32 Comments

5 months. 5 months. 5 months. ..no .. please .. Once the clock strikes midnight I can no longer say 4 months.. it becomes a whole month more.. Today was a good day. We walked to the library , first time we have been there since last summer…I planned to go once she was in school.. but never got around to it. We packed a picnic and ate behind the building. . . Jonathan remembered from 2 Halloweens ago.. when he had just turned 3 that we went trick or treating there in a nearby building with her preschool class. I try to placate myself with the thought that they won’t remember this time.. but then he pulls something like that.. A strong memory from when he was so much younger.. and I worry. I try to do things she would have liked these days. These days I am suffering inside without[…]

still brave

July 10, 2014July 24, 2014Love4JLKUncategorizedanniversary, bereaved parent, bereaved parents, child hospice, child loss, childhood cancer, dance video, DIPG, faith, faith struggles, god, heaven, marriage after child loss, music, parents grieving differently, remembering dead child, ring, suffering48 Comments

As yet another 12th comes closer I start to think about her death constantly. About what I was doing and feeling on February 9th. Remember with me.. That ring.. I remember that day. My friend coming to get it to try to save it for me.. How I hated having it off for a few hours. I love it so much. Its more precious to me than any other piece of jewelry I have ever owned. There are a lot of memorial tattoos ideas I am marinating on.. But that ring marked on me forever is for sure happening. I don’t often re-read my blogs. But I am glad I did with that one.. because it reminds me of who she was. The silly spunky way she would ask for the ring back. . and then give it to me over .. How happy she was to see me wearing[…]

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