It’s so strange to think that Noah is gone. He really isn’t. He is everywhere now, and I know that he is happy. This little boy who underwent 40 hyperbaric oxygen treatments, 1 tumor resection surgery, 4 shunt replacement surgeries, and the use of a broviac catheter, 8 rounds of chemotherapy, 30 radiation treatments, and a 2 year battle for his life… is happy now. Was he always happy? Of course, but I don’t think he was ever as happy as a normal, healthy child. I think that deep down there was sadness.
I don’t really know what to even say. It would be an understatement to say that I feel like I’ve been skinned open. Noah was just such a big part of my life. He was the beginning of our family and ever since July 22nd, he was there for every big event. Every birthday, wedding, holiday, etc. He was there. It’s only fair that I’d be with him now. I should be with him.
Every picture I have of him just makes me smile, but then I think, that wasn’t a happy day. The picture above for instance, Noah wanted to go to the pool. We let him go, even though he had his broviac that couldn’t get wet, and that same day, just hours after we went to the pool, Noah passed out and was taken to Children’s by ambulance. It was one of the scariest days because he was shocked back into life.
I love his hair up there as well. All spiked and adorable. He was so skinny too. He always maintained about 26 pounds or less during treatment, but when he was NED he gained more due to a diet that we had to follow to get his weight up. He was 35 pounds when he passed away. My skinny skinny boy. Zack is about 35 pounds right now. He’s my big big boy!
I’ve updated Noah’s Story in the top corner today, I know that some of my friends have asked about Noah’s obituary. Frankly, I don’t think we will write one. I can’t really stand to write about Noah right now. Everyone we know is connected to Noah through the blog so should we even go about writing an obituary? Or as our paper calls them – ‘Death Notices’. I don’t know. It’s still being debated. Also, I know it may be late and you all are probably out getting drunk and partying, but Balloons For Noah is our new project. Every last of the month we will send balloons with little notes in them up to Noah to tell him we are always thinking of him, we love him, and to tell him little bits of our adventures that month. We will be sending him gold balloons to light up the sky in pediatric cancer awareness, but any color would do. Noah loved balloons so that is where the idea is coming from. You can always send a balloon to another child as well.
I’m going to go play trains with Zack now, so I wish you all a Happy New Year, and to my little Noah, I love you to the moon and back. I miss you buddy. Love, Mama.
January 2, 2013 at 11:39 am
I have been checking in on you and Reilly’s Mom every day. I was not drunk or partying on New Year’s Eve when I read your last blog (maybe I should have been
! I actually spent a large part of New Year’s Eve reading and clicking around on your blog, Reilly’s blog, Ty’s blog and other blogs I am now aware of. Believe it or not, I have been spending alot of time feeling pretty sad and depressed for all of you families that are losing your children to cancer.
I do not know any of you but I have been so affected by all of your stories. I wish there was something I could do for all of you to take your pain away but that is impossible. So I hope you know that people that don’t know you, do care and are reading this blog. I am so sad for Noah, that he never had a chance to live his life to the fullest. I am sorry he’s been taken from your loving arms.
I think “Balloons for Noah” is a beautiful idea and tribute to his memory and life – to keep him alive and in the eyes of all who knew and loved him; and also for those who knew him only from your blog. My greatest fear is that all of these children who die are forgotten. That would be the greatest mistake of all, to forget these babies and not fight for a cure.
I wish you peace, love and strength.
January 2, 2013 at 3:07 pm
That has always been my fear as well. That if Noah died, and the years went on, will he be forgotten? Will Zack forget that he has an older brother? I know that it isn’t much, but for the people that knew Noah or have begun to love him, it is a way of rememberance and that is all we want right now. I’m glad you weren’t drunk on NYE, too many accidents and crazy people. I usually huddle in the house with Noah and watch him dance to the people performing on Dick Clark. I hate to think that there are a surprising number of drunk driver’s on NYE when people know what happens and that they are responsible for so many lives. I just can’t think about it. I do want to say that I read all the comments you post even though I barely respond to any. I never know what to say. I’m not good at talking or expressing my feelings or even writing the blog posts every so often. I also want to say thank you. For all of your kind hearted words, they mean so much to me. Sometimes I would read them to Noah and although he probably could care less that some stranger reads about him, he knew. He knew that there were people out there fighting with him.
January 2, 2013 at 3:38 pm
Don’t ever feel like you are not writing well-all of you are speaking from the heart- I feel like a fool writing to people I don’t know but I don’t care! I can’t NOT write and ignore what you are saying, I feel like a bumbling fool tring to say the right thing and not sound stupid. What i want to say is WE LOVE YOU, WE FEEL YOUR PAIN AND WE DO CARE, WE DO! Even though we don’t know you, how could we look at these sweet beautiful faces and read your words and not feel anything? Someone wrote on Ty’s page that we are all the Mommy Brigade, that is the truth. I am a mom of 3 little ones and I look at them and get scared sometimes- this COULD be me too, that’s the reality, your child is mine, all of these kids with cancer are everyone else’s kids too and vice versa.
I also just wanted to mention that on the “Gold Ribbons and Superty symbols” page on Facebook (page written and maintained by Ty Campbell’s family friend), she posted Noah’s pic and some info and there were about 40 comments about Noah. I don’t know if you are on Facebook but I was glad to see him there getting some love.
I wish I could change what happened to Noah, I truly do, I wish I could change it for all these children that have died
Peace and love to you!
January 2, 2013 at 4:04 pm
I know. And I understand. And I agree. I know that there are people who read this blog and Casey’s blog and Cindy’s blog and everyone else’s and they are right there with us. And I understand that it’s hard to not feel anything when you read about it. I started reading Ty’s blog in December 2010 while Noah was in a 6 hour surgery that he may or may not come back from. I couldn’t stop reading it and just bawling and hating everything about life. That Ty had cancer, that Noah had cancer, that Ronan had cancer. I came to love Ty like he was my own baby, and even Ronan. And I agree that we all stick together. We come attached to each and everyone of the families who have a child with cancer or have a child without but will do anything to support the cause. You’re righy, this could very well be you, and I am thankful that it is not. And I will pray, pray, pray that it doesn’t happen to your children or anyone for that matter.
I did see Noah’s picture on the page. I’m not on facebook – there are more important things in my life – but Casey emailed me the link and I read it all and it was just beautiful.
January 3, 2013 at 12:40 pm
I feel exactly the way NGM feels. I am completely devastated for all of you. I found you because I do closely follow Ty’s mom’s blog and facebook. It is incomprehensible to me the pain that you feel. With each post, I cry and cry. I live in NY and so I intend on helping out Ty’s foundation in any manner possible. There are no words that will heal you. Life will never be the same for you, or any of us who have come to love these children we have never had the privilege of knowing. Rest in peace sweet Noah. You will never ever be forgotten. <3 <3 <3