Tag: Diffuse Intrinsic Pontine Glioma

growing up with grief..

Grief has a place in our family.. at our table. Its kinda like a sibling to them.. One that grows and changes right along with them. Parenting a child through grief is something I never really imagined myself having to do. And most of the time I don’t feel well equipped to do it. Its much harder than I thought it would be. I am so grateful I am not alone in doing it though.. I feel so deeply for parents that lose their spouse and have to face this alone. .. Right now its Nicholas. His struggles are deep and loud and real. The disappointment he felt flipping through the most recent yearbook and realizing his sister wouldn’t be in it.. The look of settled in disappointment in his eyes. It was unnerving and unnatural to see that in a boy of his age. I ached for him. I[…]

guns, gorillas and gators

Our nation… Our country. There is a lot of sadness swirling around us. I have a multitude of thoughts about it all. Likely much of it isn’t popular opinion. But my goal isn’t to be popular is it? So many recently have joined my ranks of becoming bereaved parents… but from all different sources. Guns. Gorillas. Hot cars.  Alligators. I have 2 overarching thoughts on it all. The anger. The outrage. I get it. I have it to. But I am also so jealous, jealous that people seem to care more about these deaths. That not enough people seem to care about the 7 today that will die from cancer. The 7 tomorrow that are being slowly tortured and killed. I get it. Its not sensational. Because it IS so constant. Because is ISN’T slowing down. Logically I understand why its not newsworthy… Until it’s YOUR news. Your child. Your[…]

meant to be

**As I was typing the last word in this entry this song started playing.. Open it in another window as you read this.. Because I think she wants me to share her message to me, with you..** ok buggers. ok baby.. ok.. i love you. i love you. i love you I was talking with a friend today.. a new friend from my new life. My AD life.. This friends job is to fundraise for researchers.. well kinda. Her goal is really to raise money to save kids. To stop them from suffering.. from dying. . Its a big deal. It matters and it can be all consuming. The pressure can be overwhelming at times. I get it. So much. .. except I don’t. .. She asked how I dealt with it. Since we are so similar. How do I cope with that anxiety and pressure. The need to do[…]

is 3 real?

Tomorrow morning I wake up to a 3 year old little girl… and it makes me sick to my stomach. and really really angry. I, like all moms, get a touch melancholy about their birthdays.. about how quickly time passes once you are a mom.. But my ridiculous decorating the night before their birthday has helped it become a fun night.. Birthday eve. The other kids get to stay up and help decorate and wrap presents. I make the birthday kid a birthday chair horrifically decorated in balloons and streamers.. Its made me happy to have them turn a year older. A day all about them. . and I like giving them that. Nothing expensive.. just attention and traditions. I’m usually excited about their birthdays. .. even after Jennifer died I still have loved.. maybe even more if thats possible.. decorating and getting the house all ready after the birthday[…]

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[…]

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[…]

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[…]