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do over

February 10, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 year, grieving after 2 years12th, 2 year anniversary, anger after child loss, bereaved parent, bereaved parents, bereaved sibling, changed mommy, child hospice, child loss, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, do over, good enough mom, grieving child loss, no into yes, parenting after child loss, parenting in grief, raising children after child loss, sibling loss, surviving child loss, surviving sibling loss, surviving siblings11 Comments

Up and down and backwards.. tumbling over and over again. That was my today. I have felt every emotion possible today. But I am ending it.. in a quiet house with a few hitting me all at once.. all overwhelming in their own right .. Sadness. Dread. Pride. Gratitude. .. an odd mixture. thank you jennifer. i know. i know you have a part in the latter two. the ones that matter the most. somehow i just know i have you to thank. The dread and sadness .. I don’t think I need to explain those.. And tonight I don’t want to. Tonight those emotions are all mine. Moments to be shared with the daughter I can no longer touch.. but will one day follow into the light.. Most of the day I felt on the edge .. just hanging on by a very thin thread. Verging on an outburst[…]

roses in the ocean

February 9, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 year2nd anniversary, angelversary, anniversary of child loss, beach, bereaved parent, bereaved sibling, child death, child hospice, child loss, childhood cancer, connection with dead child, Diffuse Intrinsic Pontine Glioma, DIPG, growing up in grief, heaven, hospice, moment of death, price of realization, regrets, remembering dead child, roses, signs from dead child, veil between heaven and earth10 Comments

**I don’t often re-read what I write. But tonight I did. And this posting is a mutant writing. With makes it a perfect depiction of what its like in my head. Where nothing seems to fit together or make sense coming from one person.. And I am trying and failing not to freak out but all of my pictures are getting distorted as I upload them from my “good camera” luckily I snapped a few to text to Daddy with my phone.. So my apologies for lack of pictures. ** Jennifer loved the beach. So very much. We live so close to it. But I almost never took her. because I always had a baby or was pregnant.. or .. well really time. Its because I counted on time to do it later. I really wish I had taken her more often. Tony left on Sunday so its just been me[…]

a thousand years

February 8, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 yearbereaved parent, child hospice, child loss, child loss heaven, childhood cancer, connection with dead child, Diffuse Intrinsic Pontine Glioma, DIPG, forever 6, guilt after child loss, heaven, regrets, relationship with dead child, remembering dead child, signs from dead child15 Comments

Do you know I still haven’t dreamt of her. Not the real her. I’m ashamed to admit that .Its only been the anguished her that has found me in the dark of the night. The little girl that died in my arms. I have dreamt of her. The horror that she somehow survived day after day.. That pain filled girl comes to me. ..but its not her. please please please i need that not to be her. But I know.. I know somehow she is trying to get to me. Trying to get to me. To reach me. My 6 year old is trying to get to me and she can’t. And I am so scared its my fault. That I am letting her down all over again. I’m sorry jennifer. I’m so sorry I know this is the key. This is they way I will be able to finally[…]

..because life keeps happening..

February 4, 2016Unravel Pediatric Cancergrieving after 1 year, grieving after 2 years2 years, 4 year old grief, 4 year old sibling loss, anniversary of child loss, bereaved sibling, child hospice, child loss, childhood cancer, couples grieving differently, difference in make and female grief, Diffuse Intrinsic Pontine Glioma, DIPG, grief over a sibling you never met, growing up in grief, helping a bereaved family, how couples grieve differently, male grief, marriage after child loss, pediatric cancer, remembering dead child, sibling loss, work and child loss12 Comments

It’s coming. I can feel. Even if I didn’t know it. Even if I didn’t remember it I can feel it. physical .. unrelenting.. grief.. A heaviness in my chest. A strain on my back. Ears always ringing.. just a bit. Heart beating faster and harder. Eyes stinging.. always on the verge of emptying. Another year. .. because life keeps happening. Why couldn’t I save her? Why couldn’t I relieve her pain? Stop her suffering? did i at all baby? was it ever not excruciating? This year is so different though. I knew exactly what I wanted to do. What made sense for all of us and I was able to make it happen. There was freedom in that. Freedom. Strength. Comfort in having a plan that felt right But not this year. This year its all up in the air. And nothing not a damned thing feels right. ..because[…]

flash

January 27, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 year, hospiceanniversary of child loss, brain tumor, cancer, child hospice, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, dipg progression, lucille packard, monje, mri, pediatric brain tumor, radiation, remembering childs death, tumor donation9 Comments

flash.. Today it starts I guess.. flashes. Constantly. Of her final weeks. I feel like I am suddenly on the verge. Scared I am about to topple off.. Because I know its not a matter of it.. simply of when. But I can’t do this right now. I leave tomorrow for Seattle to give the amazing Dr Olsen a check from Unravel. Jonathan is missing school and coming with me. I need to not be a shell. .. So I hope by diving in.. and sweeping out the cobwebs of my mind.. maybe I can be more .. Because today was sudden. .. flashes.. moments.. horrible and beautiful. Walking down the hallway past what was Jennifer’s room.. now holding a sleeping baby that never got to meet her biggest sister. a flash that stops me.. Solid. I try to grasp and savor it. The weight of her.. How tiny she[…]

…now what?

January 26, 2016May 4, 2016Unravel Pediatric Cancerunravel events, unravel workfundraising for childhood cancer, get involved, gilroy, how to volunteer, local ways to get involved, national non profit, non-profit, pediatric cancer fundraiser, sacramento, san jose, volunteering2 Comments

“Don’t just be sorry. Be active.” I say this a lot. I believe in it more than anything else I share on this blog and when I speak. I am sorry. Is the sentence I hear the most. It is said with full sincerity and love. I know that. I have not once doubted it.. because hell I am sorry too. But what I want what I need even more than the sentiment of those 3 words is action. Don’t let my daughters death be in vain. Help me and all of Unravel fight against the disease that stole her. The one that takes 7 children every single day from their parents. The day she left me.. I wrote about it here and here.. I was not alone on that day. The day my heart was shattered more than I ever imagined possible… I was not alone. The next thing[…]

so much has changed

January 22, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 yearbereaved parent, cancer mom, cancer progression, cancer recurrence, cancer spreading, child death, child grief, child hospice, child loss, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, dipg progression, forever 6, friendship after childloss, guilt after child death, kid cancer, remembering dead child5 Comments

Bridgette is 5 months old.. Thats how old Charlotte was when our lives began to crumble. .. Today is hard.. I just woke up hurting and wanting. And mad. I went.. as I always do in the morning, to a place Tony and I both call wonderful torture. The “on this day” option on Facebook. And I saw the picture of my Jennifer with one of her very best friends. They were wearing the matching pink minnie shirts Jennifer picked out for them in Disney World. I smiled. Remembering how the girls were so serious about trying to match everything. Same color hair things.. and boots and leggings and blue skirts. I smiled at how happy she was to be back at her preschool even though she should have been in kinder. How we gave her the choice of where to go .. and she gladly chose Ms Sandy with Maddie[…]

4 year old questions

January 19, 2016May 4, 2016Unravel Pediatric Cancergrieving after 1 year4 year old grief, bereaved sibling, child death, child loss, child questioning death, childhood cancer, connection with dead child, Diffuse Intrinsic Pontine Glioma, DIPG, explaining child death to a child, explaining death to a child, grieving child loss, grieving sibling, heaven, nicholas struggles, pediatric cancer, sibling loss8 Comments

Last night at dinner Nicholas just started asking questions. I was giving both little girls a bath at the sink while my boys all finished dinner. It started off casual and easy and Tony asked if they had more questions.. And Nicholas did. So many. So so many. He directed them all to me. .. It was Tonys first time hearing the things he asks.. Seeing his fear and tasting his 4 year olds sorrow.. .. but we’ve done the before. The way he fights the tears that burns his eyes. They way he struggles to understand. Its just like Jonathan after Jennifer died. This deep want and desire to understand the unimaginable. kids die. we don’t have the answers and i can’t protect you. But Nicholas needs things to be right and fair and in order. As he fought the stinging in his eyes that he doesn’t understand His[…]

a bears voice

January 14, 2016May 4, 2016Unravel Pediatric Cancergrieving after 2 yearsanniversary of child loss, bereaved parent, bereaved sibling, brain radiation, Build a Bear, child death, child loss holidays, childhood cancer, connection with dead child, Diffuse Intrinsic Pontine Glioma, DIPG, heaven, lucille packard, mommy guilt, radiation treatment for a child, remembering dead child, Stanford16 Comments

The holidays have come and gone. We survived. But I don’t really have time to catch my breath. Because now the countdown begins. To the official start of our 3rd year without her. That thought makes me choke and gag. Its a horrible notion. its my vile truth. 2 years ago right now I still had some hope. That maybe.. maybe my Jennifer would be the one. The first to beat this thing. That we would have time for more memories and experiences. That we made all the right choices. Choosing to try radiation. To have Tony keep working so we could take that time later on .. to be with her while she was healthy not in treatment. I will always carry a guilt that I think I pushed for him to do that… To work while I took care of her medical needs.. then take time once we[…]