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his summer – my fall

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

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.

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[…]

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[…]

What’s it like- living with child loss

Whats it like? What’s it like to be you? I see it. I think that is probably the number 1 question I see burning behind people’s eyes that is never asked. Though it’s hinted to… in the escape of words like I can’t imagine. .. So I’ll tell you.. It’s showing up to drop my son off late at school.. walking him into the cafeteria to get one last hug as he drops off his lunch box. Something is going on.. lots of kids and fun. Its seeing a mom who asks if I am ready for the craziness.. It’s asking what and hearing that its the 3rd grade arcade day. Its the wonder for just a moment.. until you can feel the ground move beneath you.. She should be in there.. And the gym that was moments ago just 15 feet away somehow becomes miles away.. at the end[…]

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[…]

a well earned week

I feel like there is a day for everything. From the fun.. like National Garlic day ( April 19th) and National watermelon day (August 3rd) to the serious National Pediatric Hematology/Oncology Nurses Day and National Organ Donors Day (Feb 14th). There seems to be a day dedicated to most things.. But some deserve more than a day.. Its National Volunteer week.. And one thing I know for sure.. people who give of themselves. .. they deserve the thanks. I honestly didn’t even know this was a thing when I wrote my last post.. That I think explains why our volunteers are so important to me personally. But it goes beyond my own personal need for Unravel. It goes towards the researchers and the money YOU all have raised. I have seen so many people and especially families that have dedicated and donated so much of their time to Unravel.. with one[…]

belated and genuine thank you

When Jennifer was still here fighting and I started blogging I feel like everyday I had big realizations and break throughs.. After she died it was the same. I was constantly making huge deep connections within myself.. Now its rarer that it happens.. In part because its just harder to carve out this much needed time to sit and “talk” with myself.. And because maybe that’s another sign of my growth within this journey.. Not having the need to be making so many life defining or changing realizations.. But it happened recently.. and once they started I feel like its been happening a lot.. I have so much bottled up inside.. not so paitiently waiting for me to make the time to sit like this.. To take it out and look at it and begin to understand it. Texas. We recently went there for Unravel. .. I’ve always wanted to[…]

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[…]

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