Category: DIPG

bittersweet

I’ve been hoping to talk to another particular cancer mom for awhile now. She is somebody who also writes and I have been told since the beginning I should reach out to.. but it took me time to be ready for that. Then we decided we were open to another baby. I knew it was time. We got the chance to speak today. Briefly and un-smoothly.. because as much as I desperately needed this conversation. To talk to somebody that understands the one word that truly describes this pregnancy.. my kids had other needs. I never figured out what they were but they were all 3 yelling and fighting .. My apologies to Maya.. but I hope we can speak again. I don’t know whats going on but Jonathan’s struggle is intense right now. Its taken leaps forward. I had a solo counseling session with our grief/marriage counselor this week[…]

again..

Everyday brings something a little different for us. But it seems like every day is blanketed in sorrow.. like it blocks the sunshine from really penetrating. This weekend we took down most of the decorations out front of the house. Some of them were wrapped around the trees and bushes and for just a moment I smiled.. thinking how I would be doing this for her again one day when our house gets “T.Ped” because of her.. or when its decorated from a boy asking her to prom. Two whole separate thoughts.. my mind had time for two daydreams before.. truth. death. reality. A year out and I still forget .. I still can immediately go to the hope and the joy that was supposed to come with raising her to adulthood. I think I like it. I will be sad when I don’t. Because right now her life is[…]

a thousand years

Tomorrow is one year since her services. Tony is out with the guys tonight so I have spent the last 90 minutes watching the video of her services. Crying and laughing.. much like I did that day. I watched it ..I watched me .. I remembered how I felt. The pull from above. The strength in her presence that day. And I miss it. The newness of it all that allowed it not to hurt so much. I cried much more.. I cried much harder watching it all unfold again today. But it was perfect it really truly was. The only time I really cried that day was the end of it all. When we were all done cleaning up the reception and Tony walked into the room. I just went to his arms.. and I sobbed. For a moment he was protective. Wanting to know who upset me.. until[…]

our joy

There is a story that goes along with our announcement. I had planned on.. wanted to write about it. But i sit down and I find my mind is already going to another place. .. Yesterday we announced our 5th child is due August 22nd. It was a happy day for us.. a joyous day. I got messages and emails and FB postings and replies on the blog.. I read every one.. I appreciated every single letter. And when I did that I remembered. .. Jennifer. A long road to her.. 5 losses and failed adoption. .. a broken road that lead me straight to her.. One I would have ridden a thousand times to get to that destination of her. I was part of a local online forum at the time. It became like a virtual group of friends.. solid friends surprisingly. When Jennifer was finally placed in my[…]

can’t

A year later and nothing has changed. Again. Here I am . Without her. And today is so much harder than yesterday was. So. Much. Harder. I remember this day so vividly. I wouldn’t get out of bed. I think its the only day in my life I have done that. Tony and my sister went to the funeral parlor. I was in no rush. I didn’t understand why we had to go right away. I yelled at him. Told him I wasn’t going to shower. Wasn’t going to change my clothes. I have never been so angry with him in our entire relationship.. as when he suggested I shower. I couldn’t imagine washing her off of me. I still had remnants of her.. of the last moments of her life on me and I never wanted to have it go away. No. A year. Now its a real year.[…]

the difference a year makes

A year ago people woke up to this posting. .. This picture still makes me my hands and feet go dumb when I look at it. ..It makes the blood pound in my ears. .. Yesterday 7 children died from cancer. ….my child wasn’t one of them. Today 7 children will die from cancer. My daughter is one of them. She gifted me her first and her last breath. . . and so many beautiful ones in between.     Everybody that loves Jennifer has different “last perfect days” But a year ago was mine. 2/12/14. I know that’s hard to understand. But February 12th was the last day I held my daughter. It was the last time I felt her heartbeat under my hand. And those hours leading up to her death were beyond words. The connection I felt with her was the deepest most fulfilling relationship I have experienced.[…]

reach me

I feel like she is trying so hard to reach me. I feel like the distance is so thin right now. I don’t know how to deal with that. Because no matter how close she feels she is still impossible to touch. Its a unique twist on torture. To have my daughter feel like she is just barely out of my grasp…Like in movies when the characters keep missing each other just by a fraction of a second. why can’t i get to her? please she is my daughter .. please just let me have her again. … please. I want to say she is only 6 but I know in thats not really what it is.. Its that I am her mommy.. its that I need her. So many signs I am seeing. Tonight such a different thing I am feeling.   It started yesterday in the rain with the[…]

more than that

We are so broken. There really is no other word for it. We all just hurt incredibly .. each in our own way. We went to see Jennifer’s spot yesterday. The boys just wanted their alone moment there to give her the rock they painted. They got out.. one by one and spent a few minutes talking and looking at all the things there.. And then came to the car. I always go last. It makes Jonathan mad.. He wants to go last. But I have told him too bad. I am the Mom and that’s a mom right.. and I secretly hope with all of my heart that the work we are doing ensures its a parental right my son never receives. I came back to the car and got inside the drivers seat and Charlotte let loose. Screaming no and kicking her legs. I got back out to[…]

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[…]

burst the bubble

I can’t even count how many times I have been asked about my take on the Super Bowl commercial..you know the one.. Nationwide and the little boy. I’m not going to go into depth about it because all it is is my opinion.. but I will say the backlash from it scares me. I have no idea how to penetrate outside my little world with the information I now know about pediatric cancer… because as anybody that has been trying to spread the glitter has learned people don’t always want to hear it. Its depressing and scary and they don’t want to be brought down scrolling through  Facebook or during a football game.. or … well I’m just trying to figure out when a good time is? See I am too far gone I think. I was the one who turned the channel on any St Judes commercials and those[…]