Category: childhood cancer

toot toot

I can’t say for sure what it is.. But I am struggling… feels like I am barely treading water. Like my every other breath is sucking in deep murky water instead of air. I don’t know if it’s Tony working nights.. or waiting for Wyatt’s time to come.. or hormones. .. But I feel like I am thrust back down. It’s hard to get out again. Hard to want to do much. And I feel like it’s so wrong. Like having Wyatt just joining Jennifer.. hurting for his family and being reminded again so vividly how precious life is I should be a better more patient mom. Like it should reinvigorate my efforts with Unravel. I feel like its the opposite. My nerves so over charged right now I am short with the kids.. I am struggling to engage with them. I don’t want to do Unravel business.. It just[…]

Wyatt

Another little boy died from DIPG.. well so many have.. but one in particular. He looks eerily like my boys. And his mom and I have gotten very close. His name is Wyatt Norell. He was just a baby really. I have been awash in so many emotions in the tail end of his struggle and since he joined my Jennifer. So surreal to be on the complete other side of equation. .. With my phone in my hand.. volume turned up and heart constantly in my throat waiting for the phone to ring. The first time I talked to her on the 12th.. they both now will eternally share that number.. I hung up and collapsed in my kitchen. A sobbing mess. My boys came into me. And just hugged me. Looking at me with such love and concern. “What is it mommy?” So I told them. A little[…]

cancer survivor day

Cancer survival day. 2 years ago I didn’t even know something like this existed.. and if I did it was simply a blip in my day. Not a grinding and scratching reminder of what Jennifer is not. I thought it would just be one day staring me in the face. I was wrong. There is build up.. Its truly a wonderful thing to celebrate. .. I am just so horribly jealous that I can’t be part of it. I’m long over lamenting being part of the cancer community as a whole, I have met some of the greatest people in my life through it..  But I hate that I am, that we are,  the losers. A tumor in just a slightly different place in her brain.. it could have been the difference between life and death. . It certainly would have been at least a chance. With my 6 yr[…]

Let’s play family

Its all of us.. in different ways. Last night it was just me I was worried about and feeling sorry for .. just me alone in missing her I thought. You would think by now I would know better.. On their birthday cards to me .. both boys had Tony write about forever. Me loving them forever or being with them forever. As I read the word aloud I looked at them… as their bright blue eyes pored into me.. I could see them questioning and needing me so much in their moments. Its so hard to know… to predict how things will hit them. But it does. Both already know that sometimes those we love leave us. And they are scared I will leave them too. BC (before cancer) I would have held them and said I would never leave them.. I think I would have meant it.. But[…]

happy birthday mama

Tomorrow is my birthday. I have never been a big birthday person. Always feels like a set up to get your feelings hurt. Now I really hate it. I made videos for everybody else.. Jennifer singing them all happy birthday… I wanted her to do it for me too.. but she thought it was too silly… not a good surprise if I knew. I will only have one wish as I blow out every candle for the rest of my life. So I try to quiet my mind and fight the urge to wish for the impossible… The no. The please not her. The wake me up from this nightmare. I will never win that fight. I will always want it. My heart and souls longing will always be louder and stronger than me.. they will always swallow up my my minds attempt to silence them. There will always be[…]

family pictures

I love pictures..I have always tried to take a lot of the kids. Its a struggle now.. Because there is always a piece missing. And I notice it when I look through the lens of my camera. Always when a new family member joins us we take pro pictures. I don’t know that I can this time. How can we ever do it again? I will never ever have a family picture. One of my friends mentioned the other day how happy her grandma was to get a picture with her whole family at a cousins graduation.. I will never have that. A seemingly insignificant loss in the grand scheme of life.. but it hurts.. a lot. It feels like a cruel form of torture. It really hit me recently.. with the creation of this new life growing we lost the few family pictures we had. . We thought about[…]

San Jose MNO

The low after the high.. I have realized this happens to me after all our Unravel event. I think just identifying it helps me deal with it a little bit. I get to talk about her.. to know she will be known by all in the room by the nights end. And I couldn’t do any of that without her finding a way to me. I need her. As I speak out loud I silently speak to her. One moment in particular.. I looked over at 3 very dear friends of mine standing.. crying.. supporting each other as I spoke.. I looked at them and continued on out loud with my speech while talking to her privately. look sissy, they are friends now. we did that! This was our first MNO in San Jose.. the first one of these events in my neck of the woods. So I felt a stronger[…]

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..[…]