Tag: DIPG

NYC

Life moves so quickly sometimes. I thought while I was in New York I would carve out time to blog, but we were so busy I didn’t. And then coming home I have just been trying to get the house stuff and kids in order. So for those that don’t follow on Facebook (and if you don’t you should!) Tony, Bridgette and I went to New York to give money to a few labs as well as meet with additional ones we are considering funding and a few other East Coast foundations. I went through a lot of surprising emotions on the trip.. Just even being there was bittersweet. Its always been a dream of mine to visit New York. But we chose to have me be a stay at home mom and figured there would be no reason to travel that way for a long time. Then Jennifer got[…]

cool kids table

I’m jealous. Of things I never ever would have imagined feeling jealousy over. But cancer has changed me. Losing my daughter has changed me. I see the bonds other cancer families have created through time spent wandering the halls of the hospital and I want that. When I see them getting together.. those surviving and those still fighting a feel like I am walking around the school cafeteria with a tray in my hand.. with only one table to sit at. Most of the tables filled with parents who haven’t carried a cancer diagnosis and they look away and down when I walk close.. Truth is.. even when welcomed I can’t seem to figure out how to lay my tray down and sit anyways. The table is too smooth too shiny .. I see another one and a part of me longs so desperately to sit there too.. Kids that[…]

down the aisle

So I had my day planned.. . I was going to practice my speech for the upcoming MNO this weekend since I haven’t done it yet .. and then maybe carve out time to blog about how often people are surprised by my smiles.. and the joy they see in my family that is ALWAYS present.. …but Facebook had another idea for me.. Tony and I have talked lately about the love/hate affair we both have with the “on this day” option. The one that you can see old memories. .. moments that you shared a year.. or more ago on that day. Today scrolling through .. luckily after all the kids were at school or napping I was seized by the grainy image on my screen. .. with a caption of bitterly ironic words “not ready for this” Oh how I miss the safety of the sadness of watching my[…]

her same long fingers

Her fuzzy head was nuzzled against me. It was a very rare moment for me with Bridgette. My 5th child and by far our most difficult. .. sent to us from her sister in heaven that I can imagine giggling just a little for sending us this little high needs creature. So I was so appreciative of that moment. Her sleeping next to me as the sun came up .. giving me a few extra moments to lay in bed before starting our day. … but suddenly the carpet was swept out from under me. I was pulled away by my own mind from the simple beauty of the moment. To a time 2 years ago .. snuggling another fuzzy headed baby in my bed. Baby Charlotte was just 9 months when her sister left us for heaven. The day after I was broken. Battered. Quitting. I refused to get[…]

so i lied

I try to be honest. Especially in this new life we have been handed.. But I am finding I have to lie sometimes. To the outside world and my kids. With a smile that covers up the falling apart happening inside at that exact moment.. The surprising hard moments are often times the worst ones. The ones I am not ready for or expecting.. When the school year started. I used to walk Jonathan in every day. We would wait during assembly and watch him walk to the classroom. .. But the weather got colder and he wanted to be dropped off so we transitioned to that. Yesterday Nicholas asked if we could go in again. And Jonathan liked the idea so we did. I hope they don’t ask again. Two lines behind him I saw these kids.. The ones that are all strangers to me… but I know their[…]

unrelenting questions

My days seem to be so full of questions. Unrelenting questions that most will never ever have an answer. Sometimes I wonder.. why do things happen the way they do… Why does she send me the things I believe are signs the way she does. . A few days ago I was at Starbucks and saw a woman wearing a sweatshirt I knew from a distance was about brain tumors. .. I debating.. Maybe it was for an adult. Maybe she wouldn’t respond well to my coming up to her. .. but I did. Just like I asked all of you to do. I walked up to her and told her wy I approached her. Her granddaughter had a brain tumor. ..  And I felt a rush of kinship. .. Except it wasn’t. Her tumor was operable and treatable. .. And she was an adult. I think because of that momentary imaginary[…]

lets go!

I keep thinking I’ve done a good enough job explaining death and heaven… the permanency of it all to them. But its still just too hard of a concept for them to get I think.. I guess in all reality its too hard for me to really get it either.. The other day we were all driving in the car .. home from a day spent with some of our family remembering Jennifer and we heard Charlotte from the back of the car. Just hearing her little voice calling out made me smile remembering earlier in the night.. We watched a video we played at Jennifer’s services. Charlotte had been so cute as we watched the video. She was calling out so excitedly.. so proudly SISSY every time a picture of Jennifer flashed on the screen. I was crying. Big solid silent tears across the room. And she noticed. I[…]

gray

Definition of gray a. of the color gray b. tending toward gray c. dull in color having the hair gray clothed in gray a. lacking cheer or brightness in mood, outlook, style, or flavor; also: dismal, gloomy<a gray day> b. prosaically ordinary: dull, uninteresting having an intermediate and often vaguely defined position, condition, or character     I am gray. I live and survive in the gray now.. This is the merriam-webster definition of gray.. and I think it suits me.. This new AD me that I discovered in this post.. Parenting after child loss is a bitch. All parenting is hard. All parents question themselves.. I always have. But now the stakes seem so impossibly high. That if I am wrong I can be doing some real damage to their little hearts. Nicholas is hard lately. Really really hard. Angry. Defiant. Stubborn. .. and hurting. Maybe more than the rest of us right now. Is[…]

Seattle in pictures

  Seattle was great! So many memories made.. and difference to be made. We gave over 130,000 into the hands of some incredible and dedicated researchers. Thank you! I didn’t tell Jonathan until the night before our trip that we were going somewhere and he didn’t know it was on a plane until we got to the airport. Then I told him every single step before we did it. That seemed to be the perfect rhythm for him. We were on seriously the smallest plane I have ever been on. My 5 ft tall self could easily put my bag in the overhead compartment. I am not a good flier so that didn’t help!! The last time Jonathan was on a plane was our Make A Wish trip. On the flight we talked about those memories… Bridgette was perfect! Until we got to the hotel. Then she freaked. Jonathan got[…]

do over

Up and down and backwards.. tumbling over and over again. That was my today. I have felt every emotion possible today. But I am ending it.. in a quiet house with  a few hitting me all at once.. all overwhelming in their own right .. Sadness. Dread. Pride. Gratitude. .. an odd mixture. thank you jennifer. i know. i know you have a part in the latter two. the ones that matter the most. somehow i just know i have you to thank. The dread and sadness .. I don’t think I need to explain those.. And tonight I don’t want to. Tonight those emotions are all mine. Moments to be shared with the daughter I can no longer touch.. but will one day follow into the light.. Most of the day I felt on the edge .. just hanging on by a very thin thread. Verging on an outburst[…]