DIPG Archives - Page 3 of 19 - Unravel Pediatric CancerUnravel Pediatric Cancer

I am

January 15, 2017Unravel Pediatric Cancerchildhood cancer, DIPG, latest post, sibling lossanger after child loss, bereaved parent, bereaved siblings, changing emotions after child loss, child hospice, DIPG, fear after child loss, jealousy after child loss, pediatric brain tumor, stages of child loss, stages of grief6 Comments

I am out of control. Watching Jennifer struggle. Witnessing her slow and painful death.. I learned I have no control… And now.. I constantly feel like I am being battered by wave after wave of emotions. I wish I could control my mind better… I wish I could control the triggers.. know when they are coming. ..But mostly I wish I could contain them better like I used to.. It seems like its getting worse now in that aspect. That when I used to carve out time daily to write I could control the anguish better and keep it locked up until I was ready to take it out and examine it behind this keyboard.. But it seems along with the growth I have talked about recently is this new thing. .. my loss of control over the triggers.. And the way I am reacting to them. I have found[…]

inhale and exhale

September 12, 2016September 13, 2016Unravel Pediatric Cancerall posts, childhood cancer, DIPG, grieving after 2 years, growing up in grief, latest postbereaved parent, bereaved parents, bereaved sibling, child los anniversaries, child loss, child loss holidays, child loss start of school year, childhood cancer, diagnosis with dipg, Diffuse Intrinsic Pontine Glioma, DIPG, nicholas struggles, pediatric cancer, pediatric cancer awareness month, remembering dead child, september13 Comments

September marks the start of pediatric cancer awareness month.. I feel like I should be writing all about it. The ways to be involved. To not JUST be sorry but to be active.. but I can’t.. because I am selfish… and I am fucking struggling. Because the end of August and September seems to mark for me the hints of what’s to come. Soon it will be 3 years since her first symptom appeared.. then 3 years since her diagnosis.. Followed up with holiday after holiday, all now left to fight to survive and find the light again while under the shadow of Jennifer’s death. So many losses .. isn’t is supposed to be getting easier.. but I know. I know and I dread.. I am heavy. I am full. I have been feeling like I am on the verge .. almost constantly. Sitting with my living loves, snuggled on the[…]

back home

November 2, 2015Unravel Pediatric Cancerchildhood cancer, DIPG, for them because of her, growing up in grief, sibling loss, Uncategorized4 year old grief, child loss heaven, children fundraising, donate your birthday, heaven, kids saving kids, loss of innocence, nicholas struggles, parenting through grief, sibling loss10 Comments

Children are resilient. But they are also vulnerable and trusting. They believe. They hope. They try to make things right. Jennifer always did. She fought. She hoped. She trusted. Children are supposed to be innocent. I stole my 4 year olds innocence. .. Another piece of it at least.. I had to rip more of it away from him. I get told not to put my grief on them. To not misplace my feelings as theirs. They are so young they won’t remember. They barely knew her .. or never knew her. That my kids are innocent. But they aren’t. Cancer. Her death. Lack of funding. It stole their innocence. Charlotte was only 9 months .. and Bridgette wasn’t even born yet. .. The boys decided to donate their birthdays to Unravel. Instead of presents from friends they asked for donations they could make to save other kids. One thing[…]

lucille packard

October 22, 2015Unravel Pediatric Cancerchildhood cancer, DIPG, treatmentbereaved sibling, brain radiation, child death, child loss, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, jonathan struggles, lucille packard, pediatric brain tumor, radiation for a child, sisters, Stanford12 Comments

I’ve made the drive many times in my life .. Yesterday making it memories flooded back. Jonathan needs a hernia surgery. His pediatrician referred us to Lucille Packard. Its scheduled for first thing Friday morning. Initially on the drive yesterday I remembered the evening we first made the trip for Jennifer. Lost trying to find our way to the emergency room. How big and foreign the hospital looked. .. I still can’t believe that just a few weeks later I would know many of the hallways of this place.. That my almost 6 year old would also. How in the beginning we ate at one cafeteria but eventually decided the bigger one.. the one connected to Stanford was better food for her. So we would go there. I had the same breakfast every morning .. after she was out of radiation. I thought about getting it tomorrow. A yogurt parfait with soggy[…]

train is coming

October 13, 2015October 13, 2015Unravel Pediatric Cancerchild loss, child loss birthdays, childhood cancer, DIPG, for them because of her, signs, Unravel8th birthday, child loss, child loss birthday, childhood cancer, DIPG, forever 6, forthembecauseofher, nightmare, unravel6 Comments

Her birthday is coming. Like a fucking train. I am staring at a train, barreling right for us and I cannot get us out of the way. I want so desperately to make it a celebration for her .. for them too.. But I don’t know how. I am crippled from the pain right now. I feel like a failure. I couldn’t keep her alive. And I can’t feel joy in the blessing of 6 years with her. All I can see right now is the nearly 1 year 8 months I have endured without her. Dear God… That’s a long time. no. no. no. It can’t be real. I think maybe this all started in counseling.. When Tony said something had been changed for 5 years.. And my immediate thought was no. No. Maybe 1.5-2 yrs at most. But instead I just started crying. Because he was right. Because[…]

bucket with holes

October 11, 2015Unravel Pediatric Cancerchild loss, childhood cancer, DIPGcalcagno, child loss, childhood cancer, crossfit and grief, DIPG, football, remembering dead child, running and grief, scharrenberg26 Comments

I am trying so hard. To keep afloat. To not drown or go all the way under. But I don’t think I can. I just miss her so much. I want to be alone. Just locked inside this house.. Just be home. Doing nothing. Just us. I want to grab them all and just run away. I don’t want Tony to go to work.. or Jonathan to go to school. .. I want to just be near each other. But for them I try. .. I do. Not well though. I am lost .. All my old tricks aren’t working. I am doing crossfit again. But instead of having that as a time to connect with people, to pull me out of myself It pushes me further inside.. I feel like an actress.. No connection. I am locked away.. trapped inside of myself.. Too weak to allow any of me out[…]

swipe

October 8, 2015October 8, 2015Unravel Pediatric Cancerchild loss, childhood cancer, DIPGcar memories, childhood cancer, DIPG, driving to dr, Lucille Packard Children's Hospital, memories, radiation, radiation for child, Stanford, steroids for a child, the counter7 Comments

My mind wanders.. a lot. I have always been a big day dreamer. Its actually one of the reasons I have always enjoyed working out. Its a time to just let my mind and imagination run free. But right now .. even though our california weather is not very fall like I seem to remember. .. I am fighting my day dreams now.. I am finding myself crying nursing Bridgette in the middle of the night when I can’t escape my mind. .. memories. They are flooding me right now much more often.. Of her being sick. Of her treatments. Its hard to get a grip on them… They seem to move through me so quickly.. Like snippets of videos of her. I hate that. That my memories of her don’t seem real right now, they just feel like … like I’m watching her not through my own eyes but[…]

follow the signs

October 7, 2015October 7, 2015Unravel Pediatric Cancerchild loss, childhood cancer, DIPG, for them because of her, growing up in grief, sibling loss, signsbereaved siblings, child loss, childhood cancer, connection with dead child, dandelion, DIPG, forthembecauseofher, growing up in grief, jonathan struggles, library, signs from dead child9 Comments

The tears are close right now.. Seemingly just below the surface and that really surprises me. But I feel like my strength is also. .. Because I am feeling her again. Its like she knows when I need her the most. Jennifer guides me.. when I allow her to. I am finding that when I just go with things.. that she sends me signs to say she agrees.. And somehow I know its her. It’s been something that has bonded me not just with her.. but also with Jonathan in particular since he always seemed to have that easy and strong belief that it was her way of connecting to us.. He struggles with that a lot lately. Trying to explain the logic of what happens. Wanting the sign to be so obvious that there is no room for doubt. It has bothered me lately hearing that coming out of her[…]

#forTHEMbecauseofHER

October 4, 2015Unravel Pediatric Cancerchild loss, child loss birthdays, childhood cancer, DIPG, for them because of her, jennifers birthday, Our Story8th birthday, bereaved family, child loss birthday, childhood cancer, DIPG, heavenly birthday, how to celebrate a child in heaven15 Comments

Her birthday is coming. .. She should be 8. This should be a celebration. She loved her birthday. I loved her birthday. But now I am dreading it. Terribly. No balloons to blow up.. no birthday chair to decorate.. no candles to blow out. . No presents. No joy. No happy.. But she deserves more that that. She is worth celebrating. you hear me sissy? Only 6 years we got with her. A friend recently emailed me. About preparing for her soon to be 8 year olds birthday. We went to this girls 6th birthday party shortly before Jennifer was diagnosed. Our friend stumbled across the wrapping paper she had used for a game at that party.. And she was hit.. a rake to the face moment. That damn wrapping paper is still here.. but my dauhter isn’t. And its not ok. Its not fair. I don’t get to celebrate[…]

october 1

October 1, 2015Unravel Pediatric Cancerchild loss, child loss birthdays, childhood cancer, DIPG, holidays, jennifers birthday, signs, Uncategorized, Unravel12th, 8th birthday, birthday of dead child, child loss, child loss holidays, childhood cancer, diagnosis, DIPG, grieving child loss, holidays after child loss, year 2 after child loss10 Comments

The start of Oct. I am excited only for one part of it. The end of most of the Fluttering campaign. I LOVE this campaign. For so many reasons. It raises a ton of awareness and money. Kids are involved and doing it. Kids are saving kids. We partnered with other organizations and allowed people to highlight the child(ren) that have touched their lives. I am proud of it because I think it really showcases what and who Unravel is.. Awareness. Empowerment. Kids. Money for research. But I miss her. Jennifer feels so distant to me this month. I think I know why. I see messages and notes of people every single day who she is touching and inspiring to keep going with Fluttering. But I’m selfish.. I miss her. I miss the signs for me. I miss that sometimes that I feel like she is just about to come[…]

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