Category: DIPG

dug in and dig out

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

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

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[…]

glittery birthday girl

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[…]

six

Six. Never has a number had such power over me. Forever 6. My eldest child is eternally six years old.. Told on that birthday that she wouldn’t make it see seven. Her younger brother is 7.. and tomorrow her baby brother will also be 6. how? How is that even possible. Her bubbas.. I woke him this morning like I do the every morning before their birthdays.. Welcoming them to their final day of their current age. . But as I said the words .. ” Wake up to your last day of 5..” I felt a rush of cold through my veins. A cold and palpable fear. please help me keep him safe..  I’ve heard that military/police term of “watch your 6”.. and its resonated lately.. I had a feeling as to what it meant.. But I looked it up to be sure.. the defintion.. “6:00 is what lies[…]

the power of a memory

My mind often struggles to catch up with my reality. Most of the time Im not even aware of it. My daughter was here. Jennifer lived. And Jennifer died. Forever 6. The other day the kids played a joke on me. They all got in the car to go somewhere like they do everyday but when I walked over to buckle Bridgette in Jonathan was in her seat … the car erupted in giggles as I jumped back in confusion and surprise. I was laughing as I started to say Jennifer did that when she was your age.. It was like somebody ran across my stomach with a blade. The pain. Sharp. Immediate and shocking. He is 7. She is 6. Little brother older than big sister. Luckily I didn’t get the sentence out of my mouth and they were all too busy being proud of themselves to hear me.[…]

the gift of motherhood.

About 2 years ago I shared a piece of our life unconnected to childhood cancer. What I realized might have been the purest for them because of her.. Certainly the first. We placed 4 embryos for adoption (huh? Read here). These embryos turned children live in Texas, and when we found out we were having a MNO event there my first text was to their parents to see if they wanted to meet. They did. Mostly I was excited. Just to meet all of them. See them, Liz and Kevin and the kids, Sammy and Ethan. To just know what it was like to meet these genetic children .. my kids biological siblings that aren’t mine. Of course I’d be lying if I said I wasn’t nervous too.. I was going into it not having a motherly pull towards these kids.. but what if that changed?? It didn’t. It actually[…]

my question for you..

What does don’t be sorry be active mean? It means I know you are sorry I lost my daughter .. I know you are sorry she suffered.. I know you are sorry she is gone and sorry that maybe even you miss her too… But that sorry. Its not enough. Not enough because she is still fighting.. Her cells .. living and growing pieces of her.. they are fighting .. SHE is fighting but she needs help. Money. Awareness. Help to make both of those things happen. Sorry isn’t enough for Jennifer. And. And for your kids. Sorry isn’t enough for any of our kids. Sorry doesn’t stop the tragedy.. the death…the suffering from happening. It just protects your eyes.. unless.. . it get drops inside your own home and you simply cannot avert your eyes any longer. Let me pose this question. Would you do more? Would you do it[…]

3 years… almost..

Almost 3 years. I said those words aloud to another DIPG parent last week, a Dad just starting out on their journey.. and I haven’t been able to shake it. .. 3 years. Its been almost 3 years since I last held my daughter. Since I last smoothed the hair from her face.. And whispered in ears.. Almost 3 years since I felt her slight weight in my arms… I wonder. So much I wonder if I helped her. If I said the right things to her.. I wonder if she felt safe.. if she was angry? Was she scared? were you scared baby? I don’t know how to not let the slow onslaught of questions overtake me.  I am trying. I am really trying to stay above.. but the waters are rising. . A slow and constant pounding … a steady and growing swell of grief is swirling around[…]

changes.. years and reactions..

She should be 9… I am a mother to 4 beautiful, blonde haired, blue eyed living children. They attract attention. .. and are the catalyst for conversations. I often get asked if they are all mine.. or hear comments that my hands are full. If it ends there I will leave it.. but often the conversation continues and I mention we have 5.. or I just get asked their ages. . I share my truth. Our truth. Her truth. That she lived. And she died. The shock.. they look like they just got slapped. I think maybe part of me has liked that. .. Because that momentary stun that they can’t physically hide is my day to day.. my constant. .. i don’t think it will ever change.. i don’t think i will ever be used to you being gone..  Forever 6. She passed away 2 months ago. .. He is 4, and he is[…]

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