John’s big disclaimer about upsetting people:
First I wanted to start out by saying these blogs are my opinions (Gabby’s Daddy). I write them for a number of reasons. To get them out of my head, as a message to other parents who may be feeling the same way, have some of the same thoughts and just don’t feel comfortable asking others if this is “normal”. When is comes to God, the environment, and any other topic that generally pisses people off quickly I don’t judge, I don’t assume your wrong or have pity on you because your “ lost” So try to do that while you read these. These blogs also are to let people know who haven’t dealt with this who my family is, the fight Gabby put up, and the fight other children are going through. I may share a few opinions about Gods so called “plan” for us all. I am certain some people will be upset. The reasons I write this little disclaimer is to let you all know that others in The Get Well Gabby Foundation don’t all agree or view things the same way. So please don’t take your anger out about what I type on them or the foundation. The goal of the foundation is not to convince any people that their views are incorrect. The goal of the foundation is one thing: Help find a cure for your children. So chill, relax and if you get upset don’t get angry, it’s a waste of time. Just go give someone a hug
Cancer is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.
The author of this little group of words is unknown. You can see it all over the net written on things for sale. A real “feel good” group of words. It’s my opinion that whoever wrote it didn’t have a child who had cancer. I glance at these sentences and I can give you specific examples that cancer can do everyone of this things.
What cancer can do
Imagine being a five-year-old little girl. You love drawing and gymnastics, swimming and running. Now imagine within the span of a few days you can’t walk, you can’t talk, you were so proud you are potty trained for the last two years and get to wear big girl panties but now your in a diaper and can count on two hands how many times you have had a bowel movement in the last three months. Imagine your arms don’t work, you have to watch your sisters run and play while your day consists of just eating, sleeping, and hurting. Did you imagine all of that?
Now imagine that you have no idea of why this is happening? You tell your dad when your six you will no longer be sick anymore. (You’re right, because you’ll be gone from this earth 28 short days before your sixth birthday). Yesterday I was driving and full of anger. I kept thinking we should have tried to explain it better. But how do you tell a 5-year-old little girl that the survival rate for the illness you have is 0%? It’s been that way for 30 years. Now some will say you could explain that it’s part of god’s plan. Your going home, he needs you. Really? A five year old is going to understand that? So yes, I beat myself up thinking of all the things I should have said but didn’t. But I wasn’t going to give up and let her give up. I made up stories about yuckies and super princesses that were battling the illness for her when she got radiation and chemo. A fairytale? Not really the super princesses were medicine and blood cells just doing their job. No more a fairy tale than gods PLAN.
I read this so often it’s funny. It’s part of god’s plan. We can’t understand it, just trust in him and know he needed her. Well we needed her more. What part of the plan made it necessary to cut a quarter size hole in the back of her skull? Or to put a pump in her head to divert spinal fluid to her stomach? To feed her chemo which essentially is poison. Merciful god? Really? If one day I watched my daughter just vanish in front of me, pain free. I might come around to the plan idea. Torturing a little girl for 3 months and 12 days then taking her was a plan? That just doesn’t fly. Where was God when I held Gabbys hair while she filled two bowls full of vomit? When she looked at me and said “daddy why do I throw up if the radiation is done and the yuckies are leaving?” Should I have said: its gods plan baby just have a little faith. This pain is to make you stronger for the next job he has for you. No I told her it was just the yuckies coming out. Where was God when she couldn’t understand why she couldn’t swallow anymore, or the fact that she only ate rice crispies for two months? Does this sound like a good plan to you? Now I know people will accuse me of being angry. I’ve been told numerous times until I accept Jesus I won’t heal. I’ve been told remember the good times and go on and be happy because that’s what Gabby would want. I’m pretty certain Gabby didn’t care that we were happy or sad this past Christmas. I’m guessing she was pissed she was in pain and had to do so many bad things while she was sick, and now she doesn’t get any gifts. How do you smile and think about the good things and not remember there won’t be anymore good times to be had with the child you lost. Because God has a plan.
I heard something on the radio yesterday; a 16-year-old boy was decapitated when a dirt bike he was riding hit a truck. Does the plan include not letting his parents say good-bye without looking in two places? Starving children? Let them starve before you take them? Molestation? Child abuse? This plan needs some tweaking. Again I’m sure some will say that was the work of the devil. I don’t believe God or the devil gave Gabby cancer. I believe she is somewhere, her spirit, and her energy whatever you want to call it.
I read a lot, The Tibetan book of living and dying, Tao Te Ching and more. Eastern religions such as Buddhism, Taoism, Hinduism, and Sikhism have a lot of amazing teachings, which fall in line with some of my views. It’s not that I have given up on God; I’m just covering all the bases. Searching for something that can never really be found.
So cancer can do any of the things that little group of words says it cannot. It fills you with doubt, confidence is nil and does destroy peace, hope and love. Before Gabby got sick and earned her wings death was scary. I don’t view it like that anymore. I hear weekly about another child we know that has earned their wings. At first all I could say was horrible, now I’m just desensitized to the whole idea. People die, end of story. If life is only a rest stop until we are called to heaven what’s the point of life? Just to live? We don’t’ accept that, the foundation is the tool we will use to make a difference in others lives, to make sure there is more to life than just living.
Family and Friends
People always say to families like ours when your ready to talk just call. That’s not going to happen. We won’t call, not because we don’t want to. It’s the fact that as little energy as it is to pick up the phone the task is daunting to us. So if you want to do something stop by, call, you make the move because we won’t.
When people come to visit I have the habit of as Carolynn calls it hiding in my bedroom. My in-laws have talked to her about it. I believe they think I have a problem with them. I don’t. I feel safe around my daughters and wife. I know they aren’t watching me, wondering if I’m okay. I don’t have to be fake for them. I’m me and that’s all. So if you come to visit I’m trying to get better, I come out say a few things then go back. Believe it or not that’s a big step for me. People say that weddings and deaths bring out the worst in family.
The last few days of Gabby’s life the hospital put a picture of a white flower on her door. This is a picture you never want on your child’s door. Basically it means only needed people should come in. Basically, the end of the road. During this time we had many visitors, Carolynn’s parents, Madison, Katie, Her brother’s and wives, My Mother, Sister and Brother. Gabby was in a coma, I threw my Sister and Mother out of the hospital room because my Sister started crying and telling me how bad of a brother I was. Seriously? I had to chase them down and apologize while my daughter was dying upstairs. I listened to her tell me I am pushing my Uncles, Aunts and Cousins away? I just listened and told them to come back.
Do you know how many Aunts, Uncles, and Cousins called us or visited us after she was sick, none. Guess how many Aunts, Uncles, and Cousins have a Gabby shirt or wear a bracelet of hers, none. Guess how many came to the celebration of her life, that’s right, none. I have one Uncle whose family lives about 20 minutes away from Phoenixville even they didn’t come to it. I’m tired of hearing that people don’t know what to say. This was supposed to be my family. Not anymore. I don’t think any of them even know we have a foundation. It’s over one year away and we have neighbors from Phoenixville that still wear the same bracelet. A family that would do anything for us still to this day, a family with their own little 1-year-old boy, a family that has helped us in many ways and still continues to help with our foundation. To this day they wear that bracelet. These men even repaired walls I destroyed in our old house after a fit of rage. Those people, Gabby’s followers that send emails, wear her bracelets, shirts since the beginning are more like family than any of those Aunts, Uncles, and Cousins. Don’t kid yourself Cancer doesn’t just destroy families it annihilates them.
We can’t save Gabby, but we will fight to save your children. I am still amazed when I hear friends say I donated to various pediatric cancer foundations in Gabby’s name. I appreciate it and it’s a good cause, but I’m amazed they don’t donate to Gabby’s foundation in her name. It’s not easy to openly say we lost our daughter to Cancer and have decided to deal with Cancer and to fight it for the rest of our lives. It would be so much easier to just slip away and not talk about it. But that’s not what we do. I have heard people say I need to take care of my own family first. They have forgotten that’s what The Get Well Gabby Foundation is doing. Trying to take care of your children so hopefully one day you won’t have to deal with what families like ours are dealing with. I’m a realist, I understand people go on, they forget, and yes I have a constant reminder. The week before Gabby was diagnosed we went to the Dogwood Festival in Phoenixville. There is a picture on the website of her with her face painted like a puppy. I look at it now and can see the sickness, her smile slipping away. There is a little boy who was sick and they were selling bracelets. The girls wanted them. I had 40.00 in my wallet and the bracelets were 5.00 a piece. I told the girls next time. I’m sorry Missy Love I wish I had bought those bracelets that day. I just didn’t know, didn’t understand. That’s what is happening now. Gabby was so amazing that everyone was talking about her, helping, but when a child dies it’s taboo, it’s easier to fall back into our old ways and forget kids die. I truly understand. I’m just asking you all to share the foundations message and the website, not just the Facebook page with everyone. The website is so beautiful just like Gabby please visit it. We will have the new foundation shirts and other things on there soon with the proceeds all going to make a difference.
The foundation wants the first check written to go to Children’s Hospital of Philadelphia. We want it to be $100,000. We have a very long way to go. We will also be making sure it goes to exactly what the board wants it to go to. We don’t want it going to paperwork, etc. It needs to go to making a difference. We have a huge Carnival planned for September; It’s going to be amazing.
In order to achieve this goal we need more people to be aware. In February we asked everyone to help us get to 30,000 likes on Gabby’s Facebook page. You all did an amazing job. It soared to 32,000 likes. Unfortunately four months later it is still at 32,000. I saw a page with over 120,000 likes for a famous person who died of drunk driving but our foundation hasn’t moved in fours months?
So my challenge my plea for help is help us get the Facebook page to 50,000 likes by what would have been Gabby’s 7th birthday, October 9th. So share it, if you haven’t seen the video on the foundation website called “Six candles and no cake” view it, share it. It is also on YouTube along with another video created by an amazing artist about the foundation. Tweet it, tumbler, pintrest it or what ever other ways you can. Not every contribution has to be money. Believe me it helps but there are so many other ways you can help us grow. Get the name Get Well Gabby out there. We will never give up on this foundation and we will continue to grow and make a bigger difference till the day we get to see our little Gabby again. And we will do it for your children. The Get Well Gabby Foundation is a real force to be reckoned with. The times of Fairy Tales are over. Today is the day to do something that matters.
Believe in being a better person
Believe in your children
Believe in yourself
Believe in Gabby
Believe in her foundation
We were at a medical conference in Austin a couple of weeks ago and got to meet several parents. We all 100% agreed that we need to write a book on the “stupid things people say when your child dies of cancer”. Now, we realize that most people just say things because they truly don’t know what to say.. but others say some really dumb stuff.. like “it was gods plan”. “god called his angle back” … ug.. Sometimes i just want to slap them. My favorite one was: “god put her on this earth to get sick so others won’t suffer”. I want to tell you that you have inspired me even more to stay true to myself and my family. I want to say that I am not a believer. I love life, people and they things we do. my daughter suffered because of cancer. Stay strong and move foreword. I feel there is no need for a disclaimer but I do understand it. I would really like to talk. I really need other dads to talk to just to make sure I am not crazy half the time.
A different perspective, perhaps: When a child brings you a dandelion, brimming with pride and love, you accept it with love and give it a place of honor in a vase (or at least I do). I don’t see anyone slap the child’s hand and tell them what an ugly weed they have presented. Maybe look at others’ words as a bouquet of dandelions — possibly ugly weeds or stupid words to you, but given with a pure heart wanting to express love and caring the best way they know how. The giver is not as wise as you in this particular area, but they reach out as best they can.
You are one amazing dad and one amazing loving family. I truly want to do all I can do to help Gabby’s foundation. We never met Gabby and my daughter talks about her all the time. We will definitely be at all your events and spread the word like crazy! you will get there and sooner than later you will be handing over that check to CHOP. Please keep doing what you are doing.
My family will be following you every step of the way.
The Juranis Family
New Britain, Pa
I know exactly what you felt in that hospital room… I screamed, cursed and kicked out my mom and my Aunt on Monday. As my 14 yr old child lays paralyyzed, in diapers, seizing hour after hour… They were trying to help me clean, and think they are helping by correcting me, telling me I’m a horrible mom, daughter and neice! People are STUPID. We have had our friends desert us, and strangers be more supportive than anyone- including family. It is funny, they tell me i need therapy- but Im the only one in therapy! My therapist says- they are nuts. I already know I am… Cancer makes people nuts. I feel your heart, your questions, respect your honesty. No, we don’t agree on everything, but we share not all but most of the same pains, same horrible horrible cruel disease. My heart is broken, and ever hopeful that my child will be the miracle we all cry out and believe and hope for. As she sees angels, and seizes night and day… I will ever cling and dare to hope and believe that God will heal her. When I am surrounded by all who see nothing but death when they look at her…the lion in me wants to roar and remove them from my prescence if that is all they see. … I see life
In response to myself- lol(I said I was going nuts- right?)
I love my mom and my aunt, they love me, as do the many many people who just don’t know what to do, what to say, how to act, how to react to the craziness that surrounds us…..I love my friends, who cannot be there for us, who cannot know what to do or what to say…
there are so many hundreds, possibly thousands of people, some friends, some family, but mostly strangers that have been sent, by God, I believe to show us that He still loves us, and to support us, and be there for us, when others are grieving and cannot function either.
it is sad, but it forces us to change. I don’t understand it really, like Jon said, people need to just call, show up, do….don’t ask, if you have a family that you are helping, or want to help, don’t ask, don’t say you will do this or that and never do it, …just call and do it.
John, once again your words have made me more aware. I admire your honesty and clarity. Please write a book.
Love and Wishes from London UK,
Hello John, It’s seems to be a futile fight most times to get folks involved. Thank you for this blog post. I have written on many of the same subjects and it takes quite a bit of time for it to sink into people’s brains. Your words were shared and did reach me. Even though I know I was not your target audience and you want to hear from folks who were not aware of cancer in children. I lack the advise on how to better reach the people you want. It keeps me awake at night trying to think of new ways. The anger certainly helps fuel the fight for our cause to end cancer in children but it also blinds us at times. I am at a depth of depression as of late that seems to stand in the way of doing anything positive to push the movement forward. I’m not familiar with your family or your daughters illness, fight and death but I still feel for you and send love and respect from what is left of our family. I admire your ability to put your anger into words yet I imagine that gives little comfort to you. I do not seem to have anything to off but the ability to share your words when I get to a computer. I do think that the majority of people want to hear our stories about our children we just have to convince mass media that it is the case. I will find Gabbys page and like it and share as well. Kindest regards, Maxs buddy.
Your love & dignity shine through your words…. I often read your FB posts & your pain is devastating to read, but equally your passion to fight for our children is astonishing…. I wish there were answers & reasons, but mostly I wish for a cure, so on that view, we share & fight… I Believe together we can make a difference…. I believe in Gabby… XXX
So sorry for the loss of your daughter. Your words concerning family and friends struck a chord with me. Not having been in your shoes, I don’t know your pain. However, I know what it is to deal with the death of a child and to feel alienated by family & friends. Sometimes I felt they thought that somehow the death might rub off on them so it’s better to keep their distance. Your work for your foundation in memory of your daughter is a wonderful tribute.