Let’s get ready to Rumble
I’ve started a new job and have been away for the last two weeks. I come home Friday nights and leave Sunday evening to head back to the hotel north of home. Needless to say it’s been tough. It’s hard to sit in a hotel room every night and not let fear, worry and pain creep into your mind. I’ve spent most nights watching Dr. Who on Netflix. Told you I was a closet sci-fi and super hero geek.
This past week I tried to give my opinion to another Onco family. It didn’t go over to well. I have always been opinionated and very open. I have mostly moved past the times where I let what people say bother me. I need to realize not everyone has reached this point. This individual was upset with the world and the people in it who don’t realize what her courageous little boy and family are dealing with.
Below is the message I sent:
“You need to chill before you give yourself a heart attack. And get ready because I’m sure what I say next will make your head explode. This is strictly my opinion… Onco families can’t hold the non-Onco families responsible for not knowing our pain. They are oblivious to it. And honestly I would change this ” eye opening experience” in a second to go back to an oblivious state of life. To be insensitive at times, to not know more parts of the human brain and how it works than anyone not in medicine should know. Right after Gabby earned her wings I hated the world. I wanted everyone to hurt. But think about it, that’s not fair. I want those people to be oblivious; I don’t want anyone to know the pain of losing a child. That’s what Gabby’s foundation is for. Raise awareness and help towards finding a cure so they don’t have to. The world is full of insensitive people, but also full of those who can never understand and still help us all. I could still be angry and shocked at the things people say and do. At times I still am. But hate is just a waste of time; anger is a waste of time. My family and I don’t get a special pass from pain and hurt of the normal world just because we lost Gabby. Life isn’t fair… End of story. What we each do with that information is up to us. I hear people say why don’t you use the cancer card? Screw that…… When we were little, girls we got four strikes in baseball. What sense does that make? It doesn’t work like that in the real world… So I won’t use that card because I’m no different than the person who is mad about their mortgage payment or the noisy neighbors next door. Do I hurt worse, of course, but they don’t know that, understand that or ever will. When I hear about a child with no sign of disease in recovery. I pray they and their family return to the old normal. Because it my opinion the saying and idea of a new normal is bullsh@t. There is no such thing. Life stays the same no matter how we view it. Now go take a bubble bath, have a glass of wine and leave the hate at the door.”
Obviously this message didn’t go over well. The parent came back at me and explained they had been to more children’s funerals than adults in the last four years. Well that’s the point I lost it. Yes I could have said I have done the same thing, but I didn’t. This ridiculous comment pushed me over the edge. I explained that there is a big difference in attending a funeral for a child that you know and attending your own child’s funeral. I told this parent to enjoy the time they have with their child right now. He seems to be healthy and yes will continue to need scans. But don’t try to compare that pain with the pain of not having your child anymore. It goes right into what I spoke about last week. Lines drawn. When you lose a child even some of the Onco families out there don’t get it. And again I don’t want them to. I want their children to get better and become an oblivious normal child who doesn’t think about cancer. But that’s the thing it’s almost like the parents that have been fighting cancer with their child become defined by it. I don’t know what that’s like Gabby was only sick for 3 months and 12 days. So maybe I didn’t have the time to focus on cancer and only cancer. But I would like to think if gabby went into remission I would try to at least hide the fear in the closet and move on until I had to bring that nasty cancer word out the next time scans were needed.
So what did this little back and forth squabble teach me? It taught me I’m becoming one of those people who tried to give me advice a year ago about not giving into the anger. Back then I would thank them, go home and say “ screw that” I deserve to be angry, the world sucks, everyone should hurt like me!!! Now I realize how ridiculous that is. I’m not special, my family is no different than yours, yes we have lived Hell, unthinkable hell that no one but some of the families we have met understand, but that idea goes against everything that The Get Well Gabby Foundation is about.
I talked to my wife today about this. And she is angry still, and I can’t say I won’t be next week. My point to her is people don’t understand how hard it is to lose a daughter and form a foundation to help other children fighting cancer. To see it, hear it everyday. I explained that if a cure is found during our lifetime deep down we are going to say, “ why couldn’t it have been found for Gabby”? We will never get her back, But yet we fight on. We will take this foundation national and one day hopefully Global! So please help us by sharing our information and donating! Yes I want Gabby to be remembered forever. I want her life and name to mean something. I want children to know that Gabby helped them. And I truly want to help find a cure for all these children. I don’t do it so people know who I am, I don’t need adulation and praise for being strong and fighting. All I need is one child to get better and know Gabby had something to do with it, no matter how small. I just need one child to get better and forget that cancer took a portion of their childhood.
The funny thing is during debates like I had with this parent the power of social media is strong! People chime in explaining to families like ours vent away! “ They tell us people are stupid” they claim “ they hate stupid people” “ or how can anyone tell you how to feel” Remember everybody this is just my opinion. I haven’t reached some form of enlightenment and next week I may feel differently. Hell I may feel differently in 5 minutes. But these comments just feed the fire, the fuel we need as angry Onco families to hate and put ourselves in a different category. I know with these few paragraphs I’m sure I’ll get some nasty emails about the fact that I don’t know what I’m talking about. And get comments on the page. What I’m asking others is let it go. I know over the last year I have vented and screamed and said absolutely horrible things and you have all been there for me. And I will be always grateful for that. I was wrong. Don’t get me wrong I still feel the same way about the friends and family that have vanished. I was wrong to be angry at the world and the people who aren’t sick or in pain. I have opened my eyes to what Get Well Gabby is. Its about acceptance and understanding for everyone’s feelings and opinions. With one mission: help finding a cure for childhood cancer. This blog is strictly my opinion and doesn’t reflect everyone on our board’s opinions. Remember that. So when someone attacks one of us, ignore it, we do for the most part depending on whether I had my coffee or not! Gabby was a beautiful kind amazing little girl, she would giggle as someone would rant and rave. Try to do the same thing.
Where did that fear come from!
Since Gabby earned her wings I have had the fortune of meeting so many amazing families. Unfortunately we met under horrible circumstances, usually the death of their child or the declining health or their child. The first few that earned their wings destroyed me; I was a mess of tears and depression. As these children we knew kept earning their wings I started to become desensitized to death. I’d find out another one was gone and say to myself: it was just a matter of time. And refocus on the foundation to find a cure. The thing is death and disease just isn’t scary to me anymore. Just a fact of life. Kids die, it happens. I had no fear of death and sickness anymore.
Then I met Greyson.. A family that lives less than 20 minutes away. A six-year-old little boy fighting a diffused brain tumor. He has two brothers one older and one younger, a mother and family living life the only way they can at the moment hopefully to the fullest. I talked about this little guy last blog. What I didn’t say is how it opened my eyes a little wider to why The Get Well Gabby Foundation needs to grow.
I looked at Grey and his family and I see my family. We had three girls they have three boys, two families, two different places. I looked at Grey and saw hope, saw what I had at one time when we were fighting with Gabby’s cancer, the power of belief that she would get better. I saw why we do what we do. To make sure those three little boys grow old together, to fight and play but never have to know what it’s like to forget the sound of their brother’s voice.
Thursday night Grey was taken to the hospital due to something that came up. He needed scans. My mind flashed to the Saturday we unexpectedly rushed Gabby to the hospital. That night she had a seizure and never regained total consciousness again. I sat in a hotel room crying for a little boy I had met once. I felt fear again rushing back in. The fear that this monster would destroy this amazing family. Thank goodness the tumor had not changed and it was something else. I am happy to say Grey is home playing with his brothers. When my wife told Maddie and Katie he was taken to the hospital they were devastated. When she told them he was coming home Katie did a fist pump in the air and yelled yes! Like me they saw a little boy like their little sister and were touched. They keep asking when they can get together with him and his brothers to do normal kid stuff. So that’s what The Get Well Gabby foundation is trying to do, make it possible for a bunch of kids who have gone through this hell, get together and play at the beach and forget cancer and just be kids.
I was driving home this past Friday and broke down. My birthday is this coming Friday. I started to wonder what happened last year? Did Gabby Smile? Did she eat cake? Did she say Happy Birthday Daddy? I can’t remember, I can’t hear her voice. I picture that scene in the video about her “ six candles and no cake” The part where she pushes the toy cake towards me and whispers “ here daddy” and I say “ Thank you baby” That was two years ago. But last year is blank. Carolynn or the girls didn’t know either. Luckily a good friend told me I told her Gabby did know and smiled last year. My fear is I’m forgetting her, I have forgotten things and don’t know how to get them back
We have some big things planned, and some really big news about piggy paint. But that will be a surprise for another time till we have everything ready to release the news. The goal of getting Gabby’s Facebook page to 50,000 by what would have been her 7th birthday October 9th isn’t looking good, we are still about 17,000 people away. We are still asking people to take pictures of signs saying Believe and Get Well Gabby Foundation and post them on the Facebook page so we see how far she has reached. Overall things are going well, the board is pretty close to complete, we still need a few more key parts to fill, but I’m confident in the people we have and their dedication to fighting for all of your children!
When this all started we kept being told welcome to the new normal. As you have read I don’t buy into this idea. There really isn’t a new anything. Just people who have experienced unspeakable pain trying to reconstruct some of the life they had before their world changed. What I said earlier I meant. I don’t think my family or I deserve a free pass, and I’ll burn the so called “cancer card” that others speak about. We have realized that our family and our world has changed but the rest of the world has not changed with us. I do believe these children, these fighters however are special they are amazing and they are the strongest people I have ever met. A few weeks before Gabby got sick I had an endoscopy. I came home and acted like a baby, I laid in bed with Posey, expected Carolynn to take care of me and baby me. A few weeks later I was told my daughter was terminally ill and would be having surgery on her brain. Here I was a man acting like a baby (fyi it’s my opinion that when guys get sick we all turn into big babies and want a mother figure to take care of us, and since I’m coming clean I’m afraid of bugs as well!) and I watched a five year old go through numerous surgeries on her brain and body, waste away, lose all normal function of her amazing body and she never cried once. She stayed strong, brave and amazing because she didn’t want to scare us. That’s why these children deserve more, they are the ones fighting and staying strong, and they are the ones we are fighting for.
So no I don’t believe in a new normal. I believe in fighting for The Normal. A day where a sick child is no longer sick and returns to caring about what toy they want for Christmas, not whether they will make it to Christmas. So until then my family and I will continue to try to be normal, try to reclaim some type of sanity as to how the world can be this way. What it comes down to is that we can’t blame the world, we can’t blame the healthy for our pain, it’s not fair to them, and they didn’t cause this. Cancer caused it. With Your help and Support of the Get Well Gabby Foundation hopefully we can return more people to this normal. And hopefully as we get closer to finding a cure as we help these people find this normal they won’t have to take the same path we did to get there.
Believe in yourself
Believe In others
Believe In Gabby
Believe that Normal isn’t a bad thing