Category: latest post

the loudest noise

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

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

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

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

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..

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

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[…]

old life back

*I wrote this last week and didn’t realize I hadn’t published it* There is a undercurrent in our family right now. I am not sure what is causing it. I didn’t even realize it until I sat down to write my most recent blog.. The only thing I know for sure is its all different manifestations of a yearning for Jennifer.. Tony has been short with me lately. Impatient and grumpy with me. I wasn’t sure what I had done. We talked in the car ride to the airport. About a lot of things.. his things and then about how he worries that I am not going to the gym anymore, just working out at home. He has noticed I am sheltering in the house again. .. retreating inward emotionally and physically. He’s right. My only social life now is Unravel related. Up before the kids to work out alone.[…]

prison

I always want to figure it out. I always want to know why I am aching so much more than normal. But even now. Just sitting down behind my computer the tears are already flowing.. And I can’t say for sure why. There is a little girl, she looks very much like my Jennifer. Aptly named, her FB page is Katherine the Brave. And her mom has shared videos of her. And never held back from showing a snapshot of the brutal and harsh reality of DIPG. How it slowly chokes the life out of our children. .. How it tightens its grip..so cruelly slow. Leaving them completely aware of whats happening. ***moments after I posted this Katherines mom posted she had joined Jennifer earlier this evening. I hope they can become friends. And I am so damned sorry*** I saw one recently .. just scrolled past.. I didn’t need[…]

my grief

  Control. I thrive when I feel like I am in control of my emotions. Its why I am able to speak so openly in public about our journey. .. because I know its coming. Because its on my terms. Surprise. I do not do well with the surprise grief attacks. When it comes and attacks me unexpectedly. I try to always be prepared. Never really relaxed with other people around.. Vigilant against the potential for attack. That’s not life though is it? I especially hate that the surprise hooks of grief seem to grab onto me at the worst possible times.. Surrounded by people .. when I should be anything but sad. When I should be celebrating somebody else .. It’s a piece of this whole life long journey I felt so unprepared for. The guilt and shame that seems to come with the sometimes overwhelming and dark emotions[…]