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with the patience of eternity

April 10, 2018April 10, 2018Unravel Pediatric Cancerchild loss, childhood cancer, DIPG, grieving after 4 years, latest postbereaved parent, brain tumor, child death, child loss, childhood cancer, connection with dead child, coping with child loss, Diffuse Intrinsic Pontine Glioma, keeping memory alive, surviving child loss6 Comments

I know I need to write.. But Im scared to. But then again Im scared not to. I find myself aching for her.. I find myself wanting to hide and just be with my kids.. (and husband) shutting out the rest of the world. I am strong. I am the second strongest person I know. I am broken. I am the most broken person I know. I am crying constantly it seems.. just a tear.. maybe two.. Then it dries up. My pain burrows deep and hides itself away.. I freeze. I sat down now to work on our speeches for upcoming Night on the Town in Sacramento.. I started to pull up pictures for Tonys presentation.. and I felt that familiar buzz… a weight on my chest.. forcing all the air out of my body. an invisible noose tightening quickly around my throat. .. I exhale.. and its gone.[…]

the pendulum swings..

February 16, 2018Unravel Pediatric Cancer12th, burying a child, child loss, childhood cancer, DIPG, latest postanger at child loss, child loss, DIPG, grieving after 4 years, grieving and parenting, grieving couple, grieving dad, how couples grieve differently, how to grieve successfully, surviving pediatric cancer5 Comments

4 years. When you become a parent time becomes so flexible.. You can look at your 4 year old and feel like they are still so little.. yet be completely unable to remember life without them.. My guess is that never changes?? I think that maybe even my Mom looks at me like that.. However, I do know my grief is just like that.. I cannot believe its been 4 years.. the pain is still so raw and so fresh.. especially right now that I find myself wondering if I can really survive this for the rest of my life.. and.. I cannot believe its only been 4 years. I forget what it was like to parent a healthy.. living, breathing Jennifer. I hate that. I hate not only that its my truth but I hate giving that part of my pain life.. That part that feels like I can’t[…]

find me again..

February 9, 2018Unravel Pediatric Cancerburying a child, childhood cancer, DIPG, signs from heaven6 year old sibling loss, 8 year old sibling loss, bay area childhood cancer, child death, child loss, connecting after loss, connecting with a dead child, DIPG, explaining child death to a child, grieving and parenting, parenting after child loss, sibling loss, signs from dead child10 Comments

Sometimes we resist what we know.. this blog is really just a continuation of this one.. And sometimes urges and pushes are so strong we cannot ignore them.. I pulled the boys out of school and took them on a mommy and boys date to the movies. Coco. None of us had seen it… it was only in one theatre 40 mins away.. But I had this strong urge.. we were meant to go. The 3 of us had the entire place to ourselves. It wasn’t nearly as hard as I thought it would be.. Until the final scene.. when my deepest hope for what its like for me and Jennifer now was on screen. The movie ended and we left the theatre and went on the hunt for something to eat at the mall.. We talked as we walked .. in the best boy talking way.. moving and not[…]

muscle memory

February 8, 2018February 8, 2018Unravel Pediatric Cancergrowing up in grief, latest post, sibling loss, Uncategorized3 years after losing a child, 3 years child loss, 6 year old sibling loss, 8 year old sibling loss, bay area childhood cancer, child loss, childhood cancer death, explaining death to children, grieving with children, parenting after child loss, parenting in grief, parenting through grief, sibling loss10 Comments

They call it muscle memory.. mus·cle mem·o·ry noun 1. the ability to reproduce a particular movement without conscious thought, acquired as a result of frequent repetition of that movement. Yup. Both boys are struggling. Jonathan started first. His teacher came out and spoke to me after school.. He was getting in trouble at home.. Nothing major just acting out. .. and needy. Nothing seems to be enough for him. My first thought was Jennifer.. Because I knew the time was coming. .. But I do not ever want to force grief upon them.. or excuse poor behavior because their sister died. So we looked.. we tried to find other reasons.. and actually thought we had.. ..but the behavior continued. Then Nicholas’ teacher asked to speak with me.. Worried about him. He was pulling inward.. not acting like himself.. oh sweet boy Still. I didn’t want to immediately think it was[…]

dug in and dig out

October 28, 2017Unravel Pediatric Cancerchild loss birthdays, childhood cancer, DIPG, grieving after 3 years, jennifers birthday, latest post10th birthday, birthday after child loss, birthday of dead child, how to celebrate a child in heaven, surviving child loss7 Comments

dig in.. and you will dig out.. I have dug in.. enough to somehow both give me a head ache and release me from the one that has been lingering for weeks. Jennifer loved chocolate cake.. and a ton of icing. She had celiacs disease and ate gluten free.. in a time before most people knew what that was.. I pre-made cupcakes for her and froze them so they were ready for any party. Icing on the other hand could be trickier.. We found a solution though.. We would melt a ton of chocolate chips and pour it on the cupcake and let it harden into a massive chunk of chocolate on the top. And she loved that.. She loved having a giant piece of chocolate to gnaw on and get all over her face.. I don’t know what it looks like where she is.. I don’t even know what[…]

10th birthday

October 27, 2017Unravel Pediatric Cancerchild loss, child loss birthdays, childhood cancer, DIPG, grieving after 3 years, jennifers birthday, latest postafter child loss, bereaved parent, birthday after child loss, birthday of dead child, child loss holidays, childhood cancer, Diffuse Intrinsic Pontine Glioma, DIPG, helping a bereaved family, helping a family after child loss, remembering dead child10 Comments

10. she should be 10. Double digits. what a big deal. Except she isn’t here.. This is the time of year when I can really remember her.. When I have moments.. days even I can remember so vividly.. Hauntingly vividly.. When she was sick.. when she was dying.. But not her 6th birthday.. There are so many holes in that day.. So I ask about it. I ask to hear the same stories .. Where were you? Who told you? What did you think? .. I guess thats really all I ever want.. To hear your stories. . over and over again. . She should be 10.. but she is forever 6. .. And all we have is stories and memories.. My brain stumbles often.. So if you have 1 or 50 stories of her.. If they take you an hour or a minute to tell.. please . .. please[…]

reality bites

October 25, 2017Unravel Pediatric Cancerchild loss birthdays, childhood cancer, DIPG, grieving after 3 years, jennifers birthday10th birthday, birthday after child loss, birthday of dead child, birthday with a child in heaven, celebrating birthdays after death, child loss, glitter gala, helping a bereaved family, supporting a family after child loss, surviving after death of child, surviving child loss3 Comments

I had this false perspective of reality.. I thought it was a simple thing.. As it turns out it is anything but.. We can’t change our reality .. but we certainly can deny it. This still feels unreal.. Like it can’t really have happened.. My daughter can’t have died.. I think I am learning .. that it’s not so much that we get stronger in child loss or that the pain dulls but that we simply get better at denying it.. As horrible as it is to admit I think that’s how we learn to survive. . We are able to convince ourselves it wasn’t real.. that our child wasn’t really here.. So they can’t possibly really be gone. so when it hits.. it is sharp and it is biting. It can completely steal my breath and knock me out at my knees.. crippling. Right now I am hurting.. I[…]

his summer – my fall

October 1, 2017October 2, 2017Unravel Pediatric Cancerchild loss, latest postcouples dealing differently, couples grieving differently, dad grief, happiness after child loss, life after child loss, life after death of child, marriage after child loss, marriage and child loss, mom grief, surviving after death of child5 Comments

I think maybe I am starting to find my groove. Find my way in this new life of mine.. Figuring out a way to carry myself through the difficult times. My body .. my heart know what is coming and I think I am unintentionally filling my tank.. and my reserves .. Because I find myself starting to brace against the time that I know is coming. ..In my horizon is her birthday.. The day we finally became parents.. the day we learned we would without a doubt lose the child that gifted us that title. A deep internal gritting and grinding.. A fear and a slow burn starting to churn away.. Because ready or not its coming.. but because of those shadows looming in the distance I also see the light. .. The literal light .. sunlight coming through the trees. I am aware of the warmth of the[…]

glittery birthday girl

September 21, 2017Unravel Pediatric Cancerchild loss birthdays, childhood cancer, DIPG, jennifers birthday, latest post10th birthday, celebrating birthdays after death, child loss birthday, fear, glitter gala, how to celebrate a child in heaven, Jennifers birthday4 Comments

I was never a fancy birthday mom.. Never did party favors or pinterest themed decorations. .. So its only natural that I agreed to having Unravel throw an entire gala on what should be her 10th birthday!! A party in her honor to rage against the beast that ripped her unwillingly and with a slow precision from our arms. So I might as well admit it.. I am scared.. That date. October 28th. It’s held such power over me for almost 10 years. .. the date I became a mom.. The date I looked forward to for 6 years.. To celebrate the little girl that changed everything.. husband and wife.. turned forever.. mommy and daddy. . In one moment.. in one breath she did that.. And 6 years after those first exhilarating moments .. years of promise were stolen in a string of words and letters.. Cancer.. DIPG.. There is[…]

It is warmth. It is joy. It is full.

September 13, 2017September 13, 2017Unravel Pediatric Cancerchild loss, childhood cancer, grieving after 3 years, growing up in grief, heaven, sibling loss5 year old sibling loss, anger over sibling loss, bereaved sibling, cancer sibling, child loss, Diffuse Intrinsic Pontine Glioma, DIPG, grief for a 2 year old, grief for a 4 year old, grief for a 5 year old, grief for a 6 year old, how to help after child loss, oldest surviving child, relationship after sibling loss, relationship with dead child14 Comments

I’ve always known .. well I guess not always since I never in my wildest fears imagined this being our life.. But since she was put on hospice care I knew our kids would each take their own paths on their grief journeys. I remember them teaching us how our kids would each re-live the loss of their sister as they hit new cognitive and emotional milestones.. So I’ve know it.. It should be no surprise .. but it always is. I share all of this now for them.. An addendum to my letter to them.. (shared here) for them to know what I know. We were recently talking about the girl I believe to our Jennifer’s best friend. How it was 11 years since her family said their final goodbye to her. We talked about what we could do to support Brecken’s family. It brought to the surface each[…]