Category: Unravel

it falls to them

I woke up this morning and the ache… the hole in my heart and my life was palpable. I have cried often I have cried hard today. My boys and I painted rocks with nail polish to take to her. They seem to have a want and a need to go daily right now. And then they wanted to paint their nails.. to paint my nails. Jonathan knows just what to do.. exactly the way I used to do it with his big sister. Its been well over a year since he has seen that happen. But he remembered.. I was happy and I was devastated. That’s me. One giant walking contradiction. One giant ball of dueling emotions. So often feeling depleted of any true emotion but feeling such tenderness for my surviving 3. I feel like I cannot wait to die.. to get to be with my Jennifer again[…]

donations.. come in all sorts of ways

Friday was another 12th. Marking 10 months since I held my daughter last. I have promised myself that I will spend every 12th doing something for them because of her. This month for the first time the “them” wasn’t my 3 surviving kids.. I did it with my kids.. but did it for the kids still in the fight for their life. This month I was privileged enough to give Dr. Monje the $70,000 check from our first years fluttering campaign.   We had prepped the boys for it.. let them know we were going to a lab where the scientists are working to try and find a cure. Told them we were bringing a donation from the families that raised money by fluttering.     We were mostly worried about how it might be for Jonathan. Earlier that morning I had talked about my 2 sickie boys to them. About how they[…]

she moved

Words have power they have meaning. They can bring me to the depths of my pain. Thats good. But they can also help me .. and my kids.. find new ways to bring us above it. I spoke with another bereaved Dad. One who focuses on bringing the joy to kids with cancer. He shared something .. shared words with me that settled in. I will never change up completely the things I write to get out the gunk – the pain.. the genuine horror I live with daily. Because if I don’t it will take root in me. Take over me no matter how I try to keep it at bay. That is who I am. But I also can find ways to concentrate on the other portion when I speak in a loving way about my daughter .. in particular to my surviving children and the kids that[…]

Seattle

Tony and I went to Seattle to present the check to Dr Olsen and his team at Fred Hutch. We got a chance to sit down with part of the team and share a little about us and Unravel. I was so proud to present this check on behalf of 350 families that took a stand.. raised awareness and an incredible amount of money. The gratitude that each of the scientists expressed was impressive. This is not just a job.. this is obviously a mission for them. One of the researchers volunteered for 6 months until the money was raised to actually give him a paycheck. He believes in this lab that much. We came with a check to cover the cost of nearly a full year of a set of hands in the lab.. but we happened to come at the perfect time. A triple match was being offered[…]

guarantees

I almost never went to her room at night. I was too scared to wake her.. and after all I would see her the next morning.  No idea that it was a gift.  A privilege not a guarantee. I do it every night now with my boys. I kiss them and I tuck them in again. And I whisper to them. About the depths of my love for them and what I hope they are dreaming about. I hope that those quiet midnight moments make their way into their hearts and their memories. So they never doubt the depth of my love. There are no guarantees …. The promises you are supposed to be confident in telling your kids have been stripped away. I will see you soon I will never leave you Mommy’s here.. its ok.. We all lost our innocence when Jennifer died. Because I know .. I[…]

steady knowledge

Sometimes I really struggle with this new life of mine.. not just the child loss portion of it.. but also the executive director of Unravel role I am in. I miss being a housewife..days filled with cooking and cleaning.. playdates and parks. Its all I ever wanted to be .. a wife and a mom. Its all I ever wanted to do.. raise a house full of kids. But then cancer hit and stole one of mine.. and all of my dreams and aspirations have now changed… Unravel brings so much.. but it comes at a cost. There are times I just want to go back to being only a mommy and wife. In just this new life.. As a mom to 3 living and 1 in heaven.. and wife to a incredible and broken man. I want to be making scrapbooks about her and trying to absorb my little[…]

difference

Are we making a difference? I ask myself that all the time. I dedicate so much of my life and myself to Unravel.. I can’t help but wonder if its really worth it. ..This week it was answered for me In a few unlikely ways.. There was a comment on the blog… one that I am sure is not isolated.. asking questions I am assume others may ask themselves about me.. about us. But it was my answer to that question that has helped me start to rise about the ashes I have been choking on lately. Putting into writing the good that I feel we are doing was empowering. Honestly the words just flowed from me.. the confidence in a such a unsettling time. . Thanks for your reply. I want to respond to a few things. Its actually not the inevitable since lots of people choose not to[…]

never knew

I never knew.. never knew pain or despair like this before. I never knew that there is no respite from losing your child. I never knew how hard it would be. I thought I did.. thought I could imagine. .. I couldn’t.. I still can’t. Because I know I am still not at the bottom of it… not at a place I can start clawing my way back up. I still have further down to go. Its always. Its constant. There is no relief. How is that even possible? I got her name tattooed on my wrist the other day. On the drive home I called Tony to see if I could stop at the beach. Of course he said yes.. I needed that time.. To just miss her.. on the beach walking along the ocean. The sunset was incredible and I had music playing the whole time.. song after[…]

Love4jlk

I can’t believe its already September. I can’t believe a year ago I didn’t even know this month was pediatric cancer awareness month. Seriously I look back and it seems just unreal to me that I had no idea about the things that are so ingrained in me now I can’t imagine not knowing.. not living it.. or surviving it as the case may be. A year ago .. we were just a regular family of 6.. A year ago cancer was a word I rarely said.. now I say it multiple times everyday. I should count once how often I say it. A year ago I had no idea my time as her Mama was about to end.. Jennifer.. sweet baby girl of mine. Shhhhh… its fluttering time! Here is what it looked like in our home. The boys were so excited to come out from quiet time to[…]

I am a blogger

A friend of mine encouraged me .. strongly.. to go to a blogging conference. Who even knew things like that existed! It really helped me to clarify my focus and my goals. I want to speak her name. Hear others speak her name and galvanize efforts to save kids from toxic treatments and parents from joining my ranks. 7 today lose their son or daughter to cancer. It was both scary and energizing to walk up to groups of people and introduce myself. I always tried to have them share their blog/story first since my seemed to be a conversation changer. Although that was hard.. I did what I always seem to do.. and I imagined what it will be like in 2 yrs. To say my daughter has been gone 2 yrs from a brain tumor no survival. .. it will hopefully still have a impact but not the[…]