Tag: pediatric cancer

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[…]

do you get counseling..

I decided to blog about some FAQs and comments that I get..In particular I notice that as time goes on I get more judgmental themed comments on the blog. Im ok with that.. I have a thickish skin. .. But i’d be lying if I said it wasn’t part of the reason I blog publicly less .. I still need the release I get from writing.. but it does make me more hesitant to share.. I am realizing more and more how misunderstood the way I am choosing to do this whole grief thing is.. So I figured why not tackle a few of those constants.. or the ones that have bugged me the most. ** “Do you get counseling, you need counseling**”. I try to explain it this way. One. I need lots of counseling, A “ish-ton” one might say. So I get it in a mulititue of ways.[…]

but Jennifer died..

I am struggling to find the balance. I write and I miss Jennifer so terribly.. I look through pictures to add them to my words. And I see how quickly and special my time with her was.. And I realize how quickly this time is passing me with my surviving kids.. but Jennifer died. Cancer stole her. It destroyed my family. And I know I have the ability to make a difference… The altruistic part of #forTHEMbecauseofher.   But I see pictures like this. . And I realize Charlotte has already outgrown putting her shoes on the wrong feet .. Time is passing. And I miss it. Because of work. Work I never wanted. Work I never planned on doing. I miss it. I miss them. but Jennifer died. Cancer stole her. It destroyed my family. And I know I have the ability to make a difference… So how do[…]

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[…]

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[…]

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[…]

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[…]

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[…]

meant to be

**As I was typing the last word in this entry this song started playing.. Open it in another window as you read this.. Because I think she wants me to share her message to me, with you..** ok buggers. ok baby.. ok.. i love you. i love you. i love you I was talking with a friend today.. a new friend from my new life. My AD life.. This friends job is to fundraise for researchers.. well kinda. Her goal is really to raise money to save kids. To stop them from suffering.. from dying. . Its a big deal. It matters and it can be all consuming. The pressure can be overwhelming at times. I get it. So much. .. except I don’t. .. She asked how I dealt with it. Since we are so similar. How do I cope with that anxiety and pressure. The need to do[…]

Page 1 of 612345...Last »