Tag: Diffuse Intrinsic Pontine Glioma

i will stand

I am a walking contradiction. I wake up exhausted. .. yet I struggle to find sleep. I am somehow simultaneously full beyond capacity and horribly empty. and.. and the cruelest contradiction .. I am mom to 5. but only 4 that I can touch. I just want to know her still. Who she would be. See her outgrow clothes.. Know what her talents would be. .. What her current favorite popsicle flavor would be. I am forever her mom.. but she is forever 6 … and its just not the same. It just doesn’t add up or work. And right now that contradiction is just overwhelming. I am beyond broken right now..  I feel so destroyed. I just hurt.  The sheer power and force of these emotions in surprising. I cannot believe how hard this still is .. Not always.. That’s improved. But when it hits, and holy hell is it[…]

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[…]

branches of life

A few months ago we were looking into changing our insurance coverage.. Speaking with our advisor he introduced us to something called “human life value”. In simple terms .. “A way of deciding how much life insurance an individual may need. The person’s income, expenses, and years remaining in the workplace are considered”. I thought there is a blog in that.. emotion to be explored.. over all that we lost. But  the thoughts just sat.. and waited.. Until they recently resurged at my sisters 50th birthday celebration. Watching a video of the years of her life .. the people she has known and loved. The incredible mother, friend and big sister she is. So much like my Jennifer.. . I watched as these pictures flashed and all the people that she has touched. The relationships she cultivated. And the lives she created. Her children are simply incredible people. They are all godparents to one[…]

juggling

I always wanted to be a mom and I knew that I wanted a big family. It’s why I worked in day cares and summer camps and then became a teacher. To practice what I knew my lifes work was supposed to be.. I was always confident in my ability to juggle and thrive as a mom to bigger sized clan Then came infertility.. and miscarriage after miscarriage.. and then all I wanted to be was a mom. Just a chance to grab that golden ring .. Jennifer gave me that. If you ever asked her she would say Oct 28th 2007 we went from Tony and Libby to Mommy and Daddy. She gave us that. And it can never ever be taken away. I am so grateful she got to give us those titles. And I truly believe God knew I needed her first before he gave me the[…]

upside to child loss.

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

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

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

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[…]

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[…]

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[…]