Category: hospice

more than that

Posted on Author Unravel Pediatric CancerCategories burying a child, child loss, childhood cancer, DIPG, heaven, hospice, sibling loss, surviving trio26 Comments

We are so broken. There really is no other word for it. We all just hurt incredibly .. each in our own way. We went to see Jennifer’s spot yesterday. The boys just wanted their alone moment there to give her the rock they painted. They got out.. one by one and spent a few minutes talking and looking at all the things there.. And then came to the car. I always go last. It makes Jonathan mad.. He wants to go last. But I have told him too bad. I am the Mom and that’s a mom right.. and I secretly hope with all of my heart that the work we are doing ensures its a parental right my son never receives. I came back to the car and got inside the drivers seat and Charlotte let loose. Screaming no and kicking her legs. I got back out to[…]

February 1

Posted on Author Unravel Pediatric CancerCategories burying a child, child loss, childhood cancer, DIPG, her eyes, hospiceTags , , , , , 33 Comments

Hey Super Bowl. Fuck you. And while we are at it. February can go screw off too. .. Well maybe not. Maybe I love Februaury too. Because its the last month I held her. The last month I felt her heart beating.. Always strong until the moment it stopped. Just like Jennifer was. Today sucks. Because Tony wants to watch the game. Because he doesn’t have the same connection to this day that I do. So we both feel guilty for upsetting the other one. Because Jonathan just can’t stop hurting right now. His pain is strong. Intense. Real and for him so confusing. He doesn’t understand why its suddenly so palpable again. So he is constantly looking for reasons and explanations to explain why the feelings are bubbling. But the truth is.. its simply just almost been a year. And all parts of his body remember. We had all[…]

yes

Posted on Author Unravel Pediatric CancerCategories child loss, childhood cancer, DIPG, hospice, no into yes, UncategorizedTags , , , , , 13 Comments

Yes. Yes. Yes. I am eternally grateful for the yeses. And eternally sorry for the no’s. A year ago we did a last minute tea party. At a fancy tea party place. We had a lot at our little apartment together. It was certainly a daily ritual and one of my most cherished memories. She was so serious about it.. but always wanted it to be a little different. Somedays we filled the cups with water.. sometimes we ate food. Other times it was all pretend. She invited different stuffed animals .. but pinkie was always there. The reason it worked so well though.. Jennifer’s early Christmas present from my sister. We went to Ikea and Jennifer saw a purple tv tray. She told Auntie she wanted it for Christmas. We laughed. Thought she just really had to have something bought for her. But she insisted she really wanted it.[…]

e.v.e.r.y.t.h.i.n.g

Posted on Author Unravel Pediatric CancerCategories 12th, child loss, childhood cancer, DIPG, hospiceTags , , , , , 12 Comments

Tony and I went to our counseling tonight. .. well if I am being honest, tonight Tony sat on the couch during my counseling. It quickly morphed into being all about me tonight. We talked guilt. My guilt over everything. e.v.e.r.y.t.h.i.n.g. Its crippling. And I am not sure how to get over it.. get through it. I will never have the chance to say I am sorry. Never have the chance to make it up to her. No do overs. All my successes with Jennifer have happened .. as have my failures. Thats a bitter cold reality for a bereaved mommy. I feel trapped and overwhelmed in the dark memories. Of where I was.. who I was right now 10 months ago. Holding her. Talking to her. Letting the last of our family come say goodbye to her. Why couldn’t I stop this? Why couldn’t I save her? my baby.[…]

rattling reminders

Posted on Author Unravel Pediatric CancerCategories after death, child loss, childhood cancer, DIPG, hospiceTags , , , , , , , , 27 Comments

We went to do lab tours at Stanford yesterday. I wasn’t feeling so great last night so I went to bed right after the kids. I thought I would have plenty of time to write all about it tonight.. But life and memories stepped in the way. .. So tonight I write for me. I’ve never been that mom that freaks out over things with my kids. I have a dr thats over 30 mins away because he is awesome and my plan was always to switch over to him after Charlotte was 1, done with the constant well baby check ups,  since I knew we would have so few visits. But there are things. Moments really that simply knock me over. I’ve had two this week. Jonathan’s newest food avoidance strategy has been to say the food makes his head hurt. And he holds the same spot at the back[…]

haunted

Posted on Author Unravel Pediatric CancerCategories child loss, childhood cancer, DIPG, holidays, hospiceTags , , , , 11 Comments

I am haunted lately .. but not the kind I want. Just a deep dark sadness. I am exhausted all the time. Like deep down to my bones tired. Thanksgiving is fast approaching. Our first real holiday since she died. Since she was stolen from my arms. I could have held her forever. I am so grateful we donated her tumors so I had some reason and some purpose to give her the final kiss on her forehead .. the last moment I touched her.. Felt her. She was dead. Thats so backwards. She was supposed to kiss me goodbye.. she was supposed to grieve me. I still can’t figure out what we should do for Thanksgiving. Nothing seems right without her. And when you include extended family there are so many more emotions and hearts to be worried about.. to be sure its ok for everybody. And I am[…]

my hero

Posted on Author Unravel Pediatric CancerCategories 12th, anger, child loss, childhood cancer, DIPG, hospice, pediatric cancer facts10 Comments

Veterans day. A day honoring those that have fought to keep us safe. Those that walked into battle for the betterment of the rest of us. The brave. Heroes. I can’t help it.. I don’t want to do it.. But all I can think is her. My Jennifer showed more strength and fight then I have ever seen in another human being. She didn’t want to die. . so she held on.. And fought for every moment and every breath. Cancer slowly took her.. stole her away.. And when she was gone she donated the beast inside her to save others. Her little body already endured so much.. but she still donated of herself .. 3 successful types of cell lines. And I get mad. Its not cancer that stole her. Its the lacking of resources for those trying to find a cure… For her cancer, DIPG, even just a[…]

grieve

Posted on Author Unravel Pediatric CancerCategories 12th, all posts, burying a child, child loss, childhood cancer, heaven, hospiceTags , , , , , , , 24 Comments

Another 12th.. still not getting any easier. Today was filled with chores. .. Chores like breathing, which today I found so difficult to do. I felt like I was living in jello.. every movement slow deliberate and so very hard to execute. I woke up angry this morning. Not wanting to hear any more “I’m sorry’s” So my post on my personal page was similar to my parenting with my kids. Don’t tell me with your words, show me with your actions. In this case, don’t tell me you are sorry SHOW me… show me you are sorry by doing something about it.  I woke up broken.. just completely depleted of any drive or desire to do anything. But the baby was crying so laying in bed all day wasn’t a option. ..At the same time I also felt this immense gratitude for these little lives I am still being entrusted[…]

comfortable

Posted on Author Love4JLKCategories hospice, UncategorizedTags , 162 Comments

Pain. Big pain  . . real pain this morning. Upped her morphine…I think its doubled. Sleeping all day. Hospice says she is comfortable. . . stable. I hope so. I worry she is screaming inside at me. Something she is needing or wanting. And I am not answering her call for me. I’m so sorry baby. I love you. More than I ever believed was possible. Please don’t let her be scared. Let her be peaceful already. I’m scared we are making the wrong choices. What if she doesn’t really need all these meds? What if her leg itches and she can’t tell me. . . Hospice can’t say when…but said she isn’t showing the signs that its coming really soon. . We do all know a big change has occurred. My mothers heart thinks it will be soon though. A mothers heart.Thats what our girl was born with  .[…]

Angry

Posted on Author Love4JLKCategories hospice, UncategorizedTags , , , , , , , , 39 Comments

Today was hard. Will I ever not feel that way? So much of today was spent talking with nurses, pharmacists, and thankfully our great docs. Her oncologist from Stanford cried with me today. I don’t do that. I am a private crier. I have a need for Jennifer to eat, at least one more time. She might regain some of what she lost. She is hungry, but scared to eat. So tomorrow we start fresh to try to get on top of this awful vomiting and nausea. I hope to get her to eat. At least with this new plan I’ll know I did everything and didn’t just–this isn’t the right word– “quit.” She hates meds by mouth. Always has. So tomorrow we try a new path. I know it’s only been a day, but when time is this limited, when a tumor is this hungry and fierce, a day[…]