Category: DIPG

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[…]

I am

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 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

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[…]

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