Category: childhood cancer

my question for you..

What does don’t be sorry be active mean? It means I know you are sorry I lost my daughter .. I know you are sorry she suffered.. I know you are sorry she is gone and sorry that maybe even you miss her too… But that sorry. Its not enough. Not enough because she is still fighting.. Her cells .. living and growing pieces of her.. they are fighting .. SHE is fighting but she needs help. Money. Awareness. Help to make both of those things happen. Sorry isn’t enough for Jennifer. And. And for your kids. Sorry isn’t enough for any of our kids. Sorry doesn’t stop the tragedy.. the death…the suffering from happening. It just protects your eyes.. unless.. . it get drops inside your own home and you simply cannot avert your eyes any longer. Let me pose this question. Would you do more? Would you do it[…]

earthquake country

I live in earthquake country.. I always have.. but now its more. Now I exist in it too.. I am always ready.. vigilant for any potential tremors. But that’s what makes them so scary .. you never know when they will hit.. Even when they start.. you just never know how high they will register on the Richter scale.. I already know. As my fingers hit the keyboard I already know .. this might be one of those posts I never publish.. Because I know whats eating at me. .. something I struggle too admit to myself .. let alone out loud.. My jealousy. My heartbreak in the middle of others joy. The birth of my niece. Yes of course seeing a healthy baby… of remembering what it was like to first have my Jennifer placed in my arms.. Of wanting so desperately to go back.. to get those years[…]

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[…]

my friend Grief

Its February. Its here. This month that fills me with such dread.. Its here. And with her she brings my old friend.. Grief. True. Utter. Grief. Grief that hollows me out. This friend.  The one I can’t remember not knowing, yet somewhere along the line, I was able to put in some separation.. Able to call on her .. versus her calling on me.. With this month that friend is back. Holding my hands .. matching my every step. I feel like I am being slowly pushed towards an invisible line and everything in me is fighting against it.. I’m losing though. . Ive always lost to February. I find myself constantly crying. Every time I get in the car .. Even those times my mind feels blank or preoccupied .. the moment the door closes I feel that familiar prick and sting in my eyes.. Grief. She grabs my[…]

3 years… almost..

Almost 3 years. I said those words aloud to another DIPG parent last week, a Dad just starting out on their journey.. and I haven’t been able to shake it. .. 3 years. Its been almost 3 years since I last held my daughter. Since I last smoothed the hair from her face.. And whispered in ears.. Almost 3 years since I felt her slight weight in my arms… I wonder. So much I wonder if I helped her. If I said the right things to her.. I wonder if she felt safe.. if she was angry? Was she scared? were you scared baby? I don’t know how to not let the slow onslaught of questions overtake me.  I am trying. I am really trying to stay above.. but the waters are rising. . A slow and constant pounding … a steady and growing swell of grief is swirling around[…]

changes.. years and reactions..

She should be 9… I am a mother to 4 beautiful, blonde haired, blue eyed living children. They attract attention. .. and are the catalyst for conversations. I often get asked if they are all mine.. or hear comments that my hands are full. If it ends there I will leave it.. but often the conversation continues and I mention we have 5.. or I just get asked their ages. . I share my truth. Our truth. Her truth. That she lived. And she died. The shock.. they look like they just got slapped. I think maybe part of me has liked that. .. Because that momentary stun that they can’t physically hide is my day to day.. my constant. .. i don’t think it will ever change.. i don’t think i will ever be used to you being gone..  Forever 6. She passed away 2 months ago. .. He is 4, and he is[…]

I am

I am out of control. Watching Jennifer struggle. Witnessing her slow and painful death.. I learned I have no control… And now.. I constantly feel like I am being battered by wave after wave of emotions. I wish I could control my mind better… I wish I could control the triggers.. know when they are coming. ..But mostly I wish I could contain them better like I used to.. It seems like its getting worse now in that aspect. That when I used to carve out time daily to write I could control the anguish better and keep it locked up until I was ready to take it out and examine it behind this keyboard.. But it seems along with the growth I have talked about recently is this new thing. .. my loss of control over the triggers.. And the way I am reacting to them. I have found[…]

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[…]

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[…]