Category: childhood cancer

questions without answers

I have been so busy with Unravel things lately.. I have found little time to truly grieve. But now I have a empty and quiet home. My living babies tucked safely in their beds and my husband out with friends.. I sit and I stare off.. and I cry. So much. Unable to really even focus on what I am thinking.. just knowing that I miss my daughter terribly. My hurting still so deep an d Am I doing this wrong? Is it normal to still hurt so desperately? To still need so much time to just fall completely apart? My hurting still so deep and visceral. I feel raw. Exposed and so vulnerable. That when I go so many days without writing.. without digging in .. that when I finally sit and do it I find myself crying so vocally I have to cover my mouth.. afraid my pain[…]

is this normal

Baby Charlotte is 2. I have never had a 2 year old without a newborn on my hip.. She was supposed to stay the baby of our family.. she won’t. And we are so very grateful for this new baby we are waiting to arrive.. but wish I could have all of them here.. Its a bittersweet thing. Getting down the decorations I actually really liked seeing all the things we had hung up over the years for Jennifer. I touched them .. so many starting to break apart now and I remembered how much she enjoyed getting to wake up on the morning of her birthday to a decorated house.. how she had her own princess and Dora and pink sparkly decorations.. I liked it. I smiled remembering her and those birthday moments. We have some decorations that are hung up for all the kids. I remembered her being[…]

five mothers days

Numbers. Simple. But they can take on such meaning. 6. I always think of things when it comes to Jennifer like 6’s. But its not always accurate. Because I only got 5 mothers days with her. I remember that first one especially.. the utter joy and lingering disbelief that after so many years of trying to become a mom.. I was actually one, to this particular brown eyed girl. I think on some level I never stopped feeling that gratitude everyday. Even the bad ones.. to get to be a mom.. her mom. their mom. Until February 12th. I really thought there would be nothing harder to face then infertility and repeat miscarriages.. I really thought nothing could ever completely dull that appreciation. But losing Jennifer has done that. damnit I am horrified at the reality and ashamed to admit my truth,  that I woke this morning and felt such a[…]

Okizu again

Camp Okizu. What a gift this place is to families impacted by pediatric cancer. . From the child themselves to the parents to the siblings.. something individual and special for each and everyone. As soon as I got back from Seattle it was time to jump ion the car and drive to our family bereavement camp. The kids were great on the drive and Tony and I did a great job working together to prep for it. I get lost walking from my kitchen to the bathroom .. I have no sense of direction. But I remembered so much of this drive. We made it a year ago. So quickly after she died. On the drive this time I felt so much older, so much more seasoned in the world of child loss. Just a year.. Its still feels so new.. Yet it is engrained in me, a complete piece[…]

finding love in Seattle

I was lucky enough to be invited to go to Seattle to speak at a fundraising event for Dr. Olsen. One of our best friends and a member of our board, Renee came with me. I was happy not to go alone! We arrived at noon and jumped right into business. But first we ate.. in the cafeteria there.. I couldn’t help but have my mind wander just a bit then.. to all the meals I shared with Jennifer in the cafeteria at Stanford. How we struggled to find gluten free food that was safe for her.. how all she wanted was eggs and french toast. How happy she was to finally get it. Simple things I remembered. Simple things I am constantly remembering and lamenting lately. We got to tour and speak with 2 different labs at Fred Hutch. We learned about their successes and struggles and most importantly what[…]

cookie jar

A cookie jar. Its just a fucking cookie jar. . but not really. Not anymore. No its so much more. Because she made it. .. we made it. Me and Jennifer we made it together. I remember thinking I  knew then how special it would be and I remember thinking of all the other things I would make with her .. because she was supposed to have more time. Even DIPG kids are supposed to get more time.. Just a little more time.. It broke today. I looked down and the handle was broken off of it and I completely fell apart. I saw it and just covered my mouth and ran to my room. To my bed.. to her pinkie bear. Sobbing. My boys soon followed me into the room.. Bravely and bolding stepping into the fire of their mothers anguish. They didn’t even know why. They knew it[…]

normal

I feel like I should write.. like I want to write but the words won’t come to me.. neither will sleep it seems this week either. I still feel like I have so much to write I don’t want to forget.. about Seattle and our bereavement camp. But those memories seem so distant to me somehow. Not lost.. not yet at least.. but fuzzy and distant. Muted by my grief. I feel like I am deep in this right now. Struggling with my broken heart and my goals for the future. I find myself scared of so much .. my grief, my numb and from there it grows on and out. I find myself not wanting to leave the house again and letting the phone go to voicemail versus answering. What I don’t know.. what I don’t understand, is why its happening. I just hurt so much right now. I[…]

glass case

I have been gone.. been out of touch for so long.. i feel like I should write about the trip to Seattle and our family trip to bereavement camp.. I will.. but I can’t. Right now there is literally nothing else inside of me right now except the incredible want for my daughter. This is new. I don’t think I have ever felt this way. Utterly, devastatingly hollow. To describe me as a shell isn’t accurate.. A shell is stronger.. thicker than I feel right now. Charlotte only wants Jonathan .. constantly asking for him to buckle her in.. or hold her hand down the stairs or a new one just now.. Put her to bed. As I listened to them get her snuggled in I couldn’t help but realize how very much I understand. I just want Jennifer. So much. So powerful. So strong. Nothing else will do. We[…]

Guest Blog – Kristen Oakley-Hubbard

**** this is a friend of Mine and Tony’s, she lost her sister Rachel to cancer. Friday is Rachel’s birthday. I am honored to get to share just a piece of their story. **** Unpresent Company I spend a lot of special occasions, holidays and large moments in my life visiting her. I have taken each of my children to meet her within the first week they were on this earth. I rushed to tell her when I was getting married, having children, buying a business, buying a home or when I myself was faced with the word “cancer” because I know she is there to always listen to me. I’m her big sister so it seems only natural or instinctual to me to tell her all the big stuff in my life as it happens. She is my only sister and I have known her every day since I[…]

half alive

Its always so surprising.. what hits me like a sledgehammer.. Shows.. commercials…The way I compute basic information so different now.. This commercial was shared through social media. And it struck me down so hard. What a simple gift to just feel the touch of your child’s hand on your face. Would she know me still? I am so changed.. What about as I age.. I will be a whole different woman when we are re-united again. How strong is our connection? Now strained beyond words..beyond what I ever thought possible and its still just the beginning.. still just 14 months out. . can we outlast this sissy? i have to.. but will you? can you? Do they graduate at some point? Do they move on and away from us left behind? So much I don’t know. So much I question and I wonder about .. that I simply cannot know. But[…]