Tag: DIPG

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[…]

growing up with grief..

Grief has a place in our family.. at our table. Its kinda like a sibling to them.. One that grows and changes right along with them. Parenting a child through grief is something I never really imagined myself having to do. And most of the time I don’t feel well equipped to do it. Its much harder than I thought it would be. I am so grateful I am not alone in doing it though.. I feel so deeply for parents that lose their spouse and have to face this alone. .. Right now its Nicholas. His struggles are deep and loud and real. The disappointment he felt flipping through the most recent yearbook and realizing his sister wouldn’t be in it.. The look of settled in disappointment in his eyes. It was unnerving and unnatural to see that in a boy of his age. I ached for him. I[…]

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[…]

is 3 real?

Tomorrow morning I wake up to a 3 year old little girl… and it makes me sick to my stomach. and really really angry. I, like all moms, get a touch melancholy about their birthdays.. about how quickly time passes once you are a mom.. But my ridiculous decorating the night before their birthday has helped it become a fun night.. Birthday eve. The other kids get to stay up and help decorate and wrap presents. I make the birthday kid a birthday chair horrifically decorated in balloons and streamers.. Its made me happy to have them turn a year older. A day all about them. . and I like giving them that. Nothing expensive.. just attention and traditions. I’m usually excited about their birthdays. .. even after Jennifer died I still have loved.. maybe even more if thats possible.. decorating and getting the house all ready after the birthday[…]

a ocean for mothers day

I think grief is like the ocean. .. Powerful and constant. It comes in and goes out. Sometimes a storm passes and it becomes violent and dark. .. sometimes it is calm and peaceful. But it is always moving, always changing, and you have to keep kicking or you will drown. That can be exhausting.. I don’t want to drown. I don’t want to be pulled too far out from them.. my shore.  I made it through another mothers day..  I woke up to that swollen feeling in my eyes that let me know I was crying in my sleep. My mind is merciful in forgetting  what I was dreaming about.. The day was good. Blemished and bruised but so very beautiful. I am grateful to this blog for that. By digging and releasing I was able to be open to the beauty of the day versus just obsessing on the[…]

forgiveness for mothers day

Another mothers day is coming. .. I dread it. And then I feel so much guilt over that. I still have my amazing mom and I know so many others that don’t. .I am lucky not just to still have a mom.. but to have her be MY mom and my kids Coco. I am a mother to 4 of the most incredible people you could ever hope to meet. They love me. They will want to show me they love me… in simple and often sticky ways. ..but .. the one that made me a mommy. The one that bestowed the most important title on me is missing.  I remember that first year so well. And that first Fathers day. How surreal it was after years of infertility.. 5 losses.. We finally got to celebrate. Tony and I promised each other we would always make a big deal out[…]

contagious

Its not contagious. Thats one of the early things you tell a child about cancer. As their friend/sister is battling.. You can’t catch it from them. Seems like a good thing.. But maybe not… In New York we went to the American Museum of Natural History. One exhibit I wanted to see was the one on disease. I didn’t expect it to impact me so emotionally.. But it did. Silent tears fell .. just a few.. I remember I had my arms wrapped around me.. tighter and tighter… I guess thats what I do. I instinctively hold myself.. I don’t think I ever did that before.. is it you? do you make me do that now? I had given Bridgette to Tony so I could really read each sign. .. and tears started to fill my eyes. So many thoughts .. anger and sadness piling up. And surprising me. I[…]