Month: November 2014

eye roll

Thanksgiving one year ago we invited the first media outlet in to film our family and our story. I barely even remember Jennifer looking like that. So big and round in her face. She hated that. Hated so much how the steroids changed the way she felt and looked. I hated it to. A constant reminder of the monster inside.. that we were powerless to stop. .. or as it turns out even slow down. I am quoted to say “I don’t know how you go on.. people do it.. but I can’t imagine it. .. I can’t.. We watched her today with her cousins.. I think about next year, will we be able to come? I .. I don’t know. “ How can I still say that. That I don’t know how people go on.. I don’t know how I am going on… But I am. I don’t know[…]

i did this

Everything is different for us. Its not just that we lost our daughter we lost ourselves too. All the old rules have been re-written. And underneath that new writing there is always a ache.. the pain that we didn’t want things to change. No, honestly, we were all really happy with how things were. But then our 6 year old got an oncologist. .. and then a headstone. Jennifer. This was never supposed to happen. Everything is different. My kids cry and yell or act up. .. and I question how to handle it.. If I should simply give them a consequence or is it their grief manifesting itself. They lost the mom I once was.. the mom I should have been.  Unintended consequence of our battle with infertility. I really appreciated being a mom. A wife too. I was a really good homemaker. .. and I loved it. So[…]

Everybody grieves

Theres that popular kids book everybody poops.. I think I should write one called everybody grieves. Because this weekend that has been so apparent in my family. The ways we are all hurting. .. and all reaching for Jennifer, trying to connect. Waking up to my husbands tears.. knowing immediately why.. Not even for a moment questioning what is upsetting him so much in the middle of the night. He is just broken.. struggling with every moment to keep his head above water. So he does in his waking hours what is easier for him. He gets mad and frustrated over everything. But when I look at him all I see is a man completely overwhelmed.. overtaken with missing his daughter. I want so much to fix it for him. To be able to take his hand and run away. to take the burden off of his back and put[…]

haunted

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[…]

over and over again

Oh Jennifer. I miss you. All these interviews .. you should have been beside me.. not a picture behind me. I have felt something. Like a force or a strength around me. I have turned on the car and felt you speaking to me through songs that are playing. I know you are so proud of us.. Of this I have no doubt. Not just the choice we made to donate the embryos.. but also to go public. It buoyed me.. till it starts to dissipate and then the empty is so much more than it was .. I miss you. So much. We did all of this for you. To help you see and understand .. how very much we love you. How its not our blood that makes us family its our love. And that we were complete.. so perfectly complete with you and your brothers and baby sister.[…]

for them

I am a life jack of all trades. I can talk to people going through struggles with their teens… I was pretty much your worst nightmare.. no seriously.. bad enough I worry about if all the bad we have encountered I brought on myself .. on us -but thats a whole different post- I can speak about infertility and losses. Adoption success and scams. Food allergies and celiac disease.. And just plain ole motherhood. Now I have added in pediatric cancer and founder of a non-profit because of my worst nightmare come true – that is so much worse than I feared- child loss. I look at those words and it hits me.. all of these things I have experienced in my life.. They are all are because of her.. My Jennifer. The one that was so worth the broken road we traveled to parenthood.. The child that made feel[…]

half the person

She was incredible. I can never really explain her well enough. Why do I have to? Why is she gone? So many kids claim her as their best friend.. (but it was always truly Jonathan) and that’s not because she is gone.. Its always been who she is. She had a “boyfriend”  (she never called them that .. but the cutest boys did seem to flock to her and she certainly never minded!) and a friend everywhere we went.  She would even make friends at the store while we shopped.                   I don’t know what it was but there was just something about this girl of mine that was pure magic. And I miss my magic girl something awful lately. We survived another 12th.. barely though. This has been a terrible time for me.. for us. Jonathan and Tony are just down[…]

my hero

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[…]

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[…]

Sacramento

I rarely share photos of the signs we get.. but wanted to share the one above. It was the night before her birthday. A night Tony and I should have been planning ways to show her our love for her.. Instead she sent us her love.. some from Mommy and some for Daddy. Our birthday trip minus the birthday girl. She was born in Sacramento. It is a great town with so much to do for our aged kids. We missed her.. terribly.. but we made memories with our living babies while we grieved the one missing. Forever you will be missed. …until there is a cure…