Month: May 2015

i was wrong.

I try to find life lessons in everyday things for my kids. I try to help them connect what they see to who they can be. Now. Today. I did that twice this past weekend. I was able to connect others peoples fight and good deeds to them.. to us and to Unravel. .. I have to laugh though.. I tell myself I do it for them.. but honestly I know as I write I do it for me too.. To know the sacrifices we make by running Unravel are meaningful.. that there is a purpose to what we are doing. We watched .. a bit obsessively the owner at my gym compete in something called the CrossFit games. I took a lot of playful ribbing for it. But the kids noticed. They got to observe some pretty amazing stuff. They don’t know numbers of weight and what heavy can[…]

ultimate graduation

Its been a really full past few days. So much going on with Unravel. 2 MNO coming up and a golf tournament.. A few different interviews and our fluttering kits going on sale.. Its been easy to escape into it all.. Its been hard to escape into it all.. Will I ever not need to actively grieve? Will I ever be ok to go more than a day without crying without a crushing weight bearing down on me? I don’t know.. I really don’t. But I am starting to worry I may never. That losing my eldest child is truly so horrible I will never not have to succumb. . even just a little every day. Along with Unravel we had sickness that has kept us homebound for several days. Jonathan missed his last day of preschool because of it. That was ok though, because he seems to be battling[…]

we all have 2 books

I think we all have 2 books we are assigned.. The first one.. our book of life. It holds all the chapters of our lives.. And the second.. well I am not at all sure about this book.. because I think it starts when the first book closes.. And I am still in midst of my life story. So many chapters I think you count on when you have a child..  Chapters you dream about and chapters you dread and many like their wedding are a mix of both. .. Sometimes those chapters never get written .. Its hard as a parent to wrap your mind around the fact that their book is done.. I find myself flipping through imaginary pages crying over the stark white staring back at me. Those never written words in our child’s book permanently alters all subsequent chapters in ours.. It was never our plan..[…]

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[…]