Tag: DIPG

mom struggles

I am trying. Trying to be a better mom. Trying to concentrate on them.. Trying to remember the mom I used to be and bring that back to life.. at least a little bit. Jennifer got some of the best of me .. and I am scared she took it with her.. It started on Halloween.. Jonathan was sick so he stayed home with Tony and I took the others trick or treating (almost all of us got sick after that so big sorry to anybody we shared germs with!) It was the first holiday or should be hard day that wasn’t hard. Because it wasn’t just one missing .. it was two. And my mind. My heart were easily convinced that they were both at home.. Waiting and playing with their Daddy.   And the carefree I felt. The absence of that heavy grief.. it was nice. It was empowering.. And[…]

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[…]

October is my train.

October.. Waiting for that crash.. Standing beside the train tracks.. wind blowing hard and fast against me.. and nothing I can do to stop it.. I feel it though. My whole body trembles as I feel the sheer power and force of the train barreling towards my little family. October.. This month is that train.. Her birthday also the day she was diagnosed with cancer, its the start of it all.. For all the holidays that hurt so much without her.. The ones that now symbolize her short but fierce battle. .. so its not just the stark reminder that one is missing.. its also the memories of our last holidays with her.. When we knew she would die.. i didnt know.. sissy i didnt know you were already dying..  I see a video.. and I watch it.. willing me to just find her in the frame. Its all I see[…]

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[…]