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Joe Bully is a big pile of...

You can finish that one.  Tonight I let Gavin finish that sentence, it was just the thing he needed to take a minute and express frustration at how unfair this all is to him.  It made him smile through his tears.  The past two nights he has had tears when he lays down asking me, when will Joe Bully be gone?  It really sucks to look at him, and not have an answer.  You would think after 2 years we would just get over the diagnosis, like everyone else around us has it seems. 

It's very lonely being the mom who always has her child's brain tumor in mind, and everyone around you has normal life things on theirs.  It must be so lonely for Gavin to be the kid at school with the brain tumor, when he so badly wants to just be like he was before.  There is not much anyone can do to take us out of this situation - so I guess having a few words aimed at the root of the problem will have to do for now.

As I comforted him, wiped his tears and told him what I hope will happen - I was getting angry myself and wondering how he can just buy into what I am saying and keep fighting.  We have never had a moment to say, we won.  Gavin keeps being told he is winning, and most of the time believes it - but sometimes he must wonder when/if this will ever happen.  Many kids with cancer or tumors at least get a moment after 2 years of treatment- a moment that they have won, maybe temporarily but they have won.  Gavin has never had that moment.  How long can I tell him he is winning when it just goes on and on?  How much longer will he believe he can and will win?  We have no other choice but to just live this, breathe this.  I get to look in his eyes and essentially feel like I am lying to him because I don't really know.  Keep going buddy, some day it will pay off.  Well, he is long overdue for a cash in.

I am writing to say that days are still hard.  That Gavin is tough, brave, strong but he is a kid.  A child who will be 8 in a few weeks who has experienced so many horrible things.  And I can't fix it.  And right now, that makes me so sad.  We have no choice but to keep moving and doing what we are doing.  I really need some good news.  Gav's MRI is in 2 weeks - and we need good news.  Sleep tight buddy, love you so much.

53 people hearted this

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Heidi Chester
By Heidi Chester
Some times I just feel at a loss for words, this is one of them. Just breaks my heart, and to say I am sorry for what you are all going through just does not cut it. But I am, and I will always keep praying, we will never give up on that. Sending Hugs
Robbyn Riviere
By Robbyn R.
It is so hard to be strong. But Gavin, you are the definition of strength, as are you, Nicole. You have my love and admiration, and my prayers. You deserve the very best life has to offer. I am sure you will get this one day soon.
2 people hearted this
Kathy Molenaar
By Don & Kathy
Nicole and family-Our words are inadequate I know. But I do hope you feel some comfort from them. Your help comes from God and He is always there with you. Your burden is heavy and He is helping you to carry it all the way. You may feel like you have lost the daily war, but you will WIN the battle. Please give Gavin our love and hugs. We care. You and your entire family are in our prayers daily. And our wonderful Father hears them. Hang Tough.
1 person hearted this
Sarah Gouzoules
By Sarah Gouzoules
Nicole: I just caught up on a few of these entries. I just want you to know I'm thinking of you and Gavin. I'm sorry you feel so alone in this. I'm curious to know if you use Facebook to have a group of parents that are going through the same thing with their child? I have seen first hand how that type of support group can be a wonderful resource and doesn't make you feel so alone. I know of a family camp called Camp Sunshine in ME that is free for families. I have heard many wonderful stories from families that return every year.
How did Gavin like his baseball team? Take Care! Sarah
1 person hearted this
Jim Maydelle Fennick
By Jim Maydelle Fennick
Nikki, I know how I finished the thought... probable a lot like you did! Your honesty is not only appreciated by us, but I believe appreciated by God as well. Your responses to Gavin are not lies, they are the truths of a mom who is so knowledgable. As always, you have the understanding that we wrap you in prayers of love and concern daily. Jim & Maydelle
1 person hearted this
Wendy Markham
By Wendy
I follow you because my brother is a friend of your family. My heart hurts for what all of you are going through. I am praying for your family.
1 person hearted this
Debra Miller
By Debra Miller
I know your feelings of feeling completely alone. I often feel like I can't talk about all of Vanessa's "issues" because I would be 'that mom'. I am sorry you are going through a rough time. Take a breath and ask for God's strength to keep fighting. It's tough but knowing you have no other choice helps too. You are an amazing mother! Gavin is blessed to have you by his side! Take your "moments" and then pick yourself back up. God is always with you! We continue to pray for you all! Hugs momma!
3 people hearted this
Ei Strain
By Ei Strain
Nicole, I can not even imagine. Perhaps if you look at the actions of others treating Gavin as if it's not going on. You and Gavin can use that as a positive. I know it hurts. But flip and use to empower your sweet boy. "See honey, I am not only one who KNOWS you are winning". As I said can not imagine. I just know your little boy has brought me through some tough days. You and your family also. Sleep tight yourself, Nicole.
Prayers, Love, and Hugs!!!!
1 person hearted this