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upside to child loss.

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There are side effects of child loss, but I have learned lately not all are negative. And none of them are stagnant. They all seem to be, at least for me, on a pendulum. I realized today I miss some of the moderation that life used to hold. That middle ground of normalcy.. Maybe it will return.. Maybe 10-15 years .. But right now I can’t imagine that it will. I realized today I am always on edge.. Not a razor sharp emotional breakdown edge.. or losing my shit edge but rather just tight? or guarded? or maybe waiting and prepared?.. Not sure the right way to explain it. . I just know I am pretty much never just hanging loose in the middle anymore. .. Because I know that thing that causes people to say ” I can’t imagine it” or ” thats my worst fear” .. I know the[…]

spoken in silence

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I miss you Jennifer.  I wish I had something more.. something deeper and more profound to say. Words fail me though. . Because I constantly miss her.. Its always there.. sometimes just a subtle current. But not always.. it scares me how quickly the tide can rise up and drown me in my own sorrow.. .. I mean I get it.. I think if I was an outsider looking in I would get it.. Its my daughter.. My child. I can cognitively understand that it will never really get better.. But it scares me still, the times that I can feel it slowly building and growing power.. Or times that it just swells up suddenly.. How easily I can still succumb to the simple yet echoingly deep grief. How I can look up at her picture and yearn.. so incredibly. .. to just follow her into the light.. I imagine[…]

a letter to my surviving kids

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Kids. This ones for you. I recently said I was excited to get old. That my age only bothers me because I am still so young. One of my brothers is turning 40 this week and I thought I know exactly what I will think when I blow out my 40 candles.. The same thing I think every year now.. One year closer… a little bit closer to my grave. And that makes me happy.. Then I was asked about my other kids.. Do I worry about how those feelings might impact them? So kids. This one. This ones all for you. .. ..your mothers love letter to you.. They all are really though.. Just not in the typical fashion. Every word I type here is my fight for you. My digging into the infection that is grief. A wound created by the loss of your sister. One that if left[…]

the loudest noise

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Its the little things.. the silly, seemingly insignificant things that can rock you to your core. It’s not just like that with child loss though .. I think its like that with everything. The things you take most for granted are the things you miss most when they are gone. Her name. Jennifer. I have written often about how it matters. How I like to hear people say it. To know they are breathing life back into her by using her name.. But I think I forgot about me. I use it. I talk about her. Often. But another bereaved mama friend posted something the other day that made me realize what a huge piece is missing. .. Her name. Jennifer. Talking to her. Saying her name to her. My friend posted that she walked around her home calling Liam. .. just over and over again calling his name. She[…]

Guest Blog – Dyan Part 2

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This is a follow up to a easier blog written by Dyan.. and a introduction to how she turned her talent into action. Thank you for sharing your story with us. And showing us your talent and devotion to your daughter.. and kids that are fighting and scared.  Why I don’t know why things happen the way they do. I don’t know why my daughter’s genes mutated, what little thing caused their line-up to go awry. I don’t know why it took so long for us to notice something wasn’t right with her spine. I dress her two times a day and am the one who gives her baths several times a week. That adds up to hundreds of times in just one year that I had plain view of her back. Why didn’t I notice this thing that was so very far off course? I don’t know if it was the[…]

flawed but whole

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I have these positive posts planned. These things I want to write about laid out in my head and I get excited for it. Excited to explore different avenues of myself and my thoughts and my heart in the way that blogging allows me to. But.. my body seems to know. I write a lot now on Thursdays. My Mom watches 3 of the bigger kids .. will it be like that for the rest of my life.. will I forever stumble over how to refer to my kids. 3 bigger,  the kids,  the girls,  .. its a constant and subtle stab.. one is missing one is missing.. So my parents have them on Thursdays. Its my work day. I try to fill the day with all things Unravel.. and at night we go to counseling. Somewhere along the line I started writing while Bridgette slept. And now its part of[…]

ding dong

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Knock knock.. What is the world.. Who is that at the door at this hour? It’sssss FLUTTERING. People this is not a drill. This is the real deal. It’s time.. it’s time.. it’s time..  it is that wonderful time of year (well at least the precursor to it) when we invite every single one of you to not just be sorry but to BE ACTIVE. Fluttering allows everybody to share the facts and raise money.. and the kicker… (are you ready? get ready..) IT’S FUN. (buy me buy me buy me) boom. yea that just happened.   “Wait.. so Libby you are telling me. I can raise money and awareness and enjoy it?” you betcha.. Here is how it all began.. Less than 3 years ago. .. Wow.  “But I don’t know 30 people to flutter” -no prob Bob. You just need to know one person to Flutter and THEY choose[…]

relapsed

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I want to help. I want to change. I want to heal. I am selfish most of the time. Most of the time I hurt just for me. For us. For our loss. For our pain. ..but Unravel. We didn’t name it after Jennifer. We didn’t make it specifically a DIPG or even brain tumor research foundation. (although we certainly fund it) I have always known why. Always known it was because its bigger and more than just her. But today sitting outside of Starbucks is when my heart absorbed the reason. His name is Juan David. Just two and a half. Infant ALL. .. oh well ALL thats a “good one” right? Thats a easy one right? Well as sweet Elayna taught us there is no such thing as easy or good. The treatments are always brutal.. And infant ALL.. is actually not good. The percentages aren’t in their[…]

growing up with grief..

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Grief has a place in our family.. at our table. Its kinda like a sibling to them.. One that grows and changes right along with them. Parenting a child through grief is something I never really imagined myself having to do. And most of the time I don’t feel well equipped to do it. Its much harder than I thought it would be. I am so grateful I am not alone in doing it though.. I feel so deeply for parents that lose their spouse and have to face this alone. .. Right now its Nicholas. His struggles are deep and loud and real. The disappointment he felt flipping through the most recent yearbook and realizing his sister wouldn’t be in it.. The look of settled in disappointment in his eyes. It was unnerving and unnatural to see that in a boy of his age. I ached for him. I[…]

guns, gorillas and gators

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Our nation… Our country. There is a lot of sadness swirling around us. I have a multitude of thoughts about it all. Likely much of it isn’t popular opinion. But my goal isn’t to be popular is it? So many recently have joined my ranks of becoming bereaved parents… but from all different sources. Guns. Gorillas. Hot cars.  Alligators. I have 2 overarching thoughts on it all. The anger. The outrage. I get it. I have it to. But I am also so jealous, jealous that people seem to care more about these deaths. That not enough people seem to care about the 7 today that will die from cancer. The 7 tomorrow that are being slowly tortured and killed. I get it. Its not sensational. Because it IS so constant. Because is ISN’T slowing down. Logically I understand why its not newsworthy… Until it’s YOUR news. Your child. Your[…]

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