I wrote this paragraph at 9:30 pm. Long after I wrote everything else below. Right after Gabby earned her wings I told another parent who has a child dealing with Cancer: People will forget Gabby. She agreed. Not in a bad way, She was just stating a fact. People move on. They move on to support the next child, they move on in life. After I wrote the rest of this Blog I told Carolynn it wasn’t good. There wasn’t anything that would help people in this one. I write this Blog at times to make sure people still listen, haven’t forgotten her. It’s obvious how many more people go to her website after I write these. But today I wrote and realized it’s the same thing. Nothing new, nothing different just the same story, tears, fears and doubt. Carolynn made me realize something. I’m Stuck. I used to say I was lost and broken. I see now I’m just stuck in the same place and can’t find my way out. I’ve cut off friends and family. I don’t feel love, anger, happiness or even sadness right now. Don’t get me wrong I’m devastated and miss Gabby and the way my other daughters were so much. It’s just right now all I seem to want to do is sit, watch birds, stay up till I pass out and then sleep. I wake up and go through the motions, help the girls with homework, play games and read with them but like I said before: I just wake up and count the minutes till it’s quiet again and I don’t feel guilty for just wanting to sit in a spot and not talk. I just want to go back to sleep. So listen when I say this. Don’t just hold your child tighter because of what you have read here for the next few months. Truly change your way of thinking, change how you live. Truly appreciate your life and enjoy every minute of it with the ones you love. Because if you don’t one day you may wake up and realize you’re stuck to.
To all the new supporters I wanted to say thank you and welcome to our journey. For all the existing supporters that have stuck with us thank you. For anyone new I wanted to explain a little about this blog and the rest of the blogs on Gabby’s website. I write for a number of reasons, to make sure the world knows what Gabby went through, to get these thoughts out of my head, to make sure that others going through this understand they are not alone, and there could be people thinking the same things. I say some rough things, things you may disagree with. In the beginning of Gabby’s journey I at times went too far. I said some pretty rough things. I won’t delete them. It was how I felt at the time. I have been open and honest and won’t change that now or ever. When Gabby earned her wings I drank a lot right after. I no longer drink to dull the pain, I write, I read, and I try to keep moving and be there for my family. Some days I do better than others. Yesterday wasn’t one of those good days.
Gabby was granted a wish by Make a Wish to go to Disney. When the organization came out they like to have the child tell them what they want. Gabby at this time was frightened of everyone and could barley talk, but she did manage to say so very quiet “ I want to see the princesses”.
We decided to wait until her treatment was over and Gabby was feeling better to use her wish. Gabby earned her wings a few weeks after her treatment ended. She never got better and never got to see those princesses. The last and only time Gabby saw Disney was over her first birthday, six years ago.
When Gabby earned her wings the trip was no longer available to us since it was her wish. I didn’t want to see Disney ever again at the time, and still don’t want to see it for a very long time. Gabby’s two older sisters who knew we were supposed to go to Disney asked if they were still going. How were we supposed to tell them that not only did they lose their sister but this special vacation for them was gone to. After posting this information on Gabby’s facebook page, a supporter of Gabby’s started a campaign to earn money to send us. The organization Wish Upon A Hero also started to raise donations to send us on this trip. It was amazing to see so many strangers who we have come to love and talk to on a daily and weekly basis care so much to make Gabby’s sisters dream now come true.
With all the donations we received Carolynn and I decided we needed to go for the girls. We didn’t tell them we were going. We let them believe we had a bowling fundraiser to go to over the weekend and they were coming. They were not very excited to go bowling but they knew they were doing it for their sister.
While they were at school we packed all our suitcases. We didn’t want them to see the swimsuits and sandals. We had planned to stay at a hotel near the airport. We told them we had to park in a special lot and take a shuttle to the hotel. We also told them we had to walk through the airport to get into the hotel. We are tricky parents. When we arrived inside the airport, we stopped to look around for what direction we had to go to get to the hotel. The girls sat down and we asked if they really wanted to stick around Philadelphia that weekend. I said it’s too cold here, lets go somewhere warm. We asked them, if we could go somewhere, where would you want to go? Madison said very quietly “Disney?” I asked them if that’s where they wanted to go, Disney? So John and I said, sure, let’s go. The conversation continued back and forth until they finally realized there was no bowling fundraiser and we had planned this all along. The girls were confused and in shock, didn’t understand what was happening but eventually they got it and were overjoyed.
Bring on the crying
As we flew to Florida I started looking at pictures of Gabby and her sisters. I looked next to me and Maddie was pressed up against my arm. Katie was sitting with Carolynn. Katie doesn’t eat a lot anymore, always says she feels sick and is constantly worried about getting a fever and throwing up. I broke down bad, couldn’t control it. All I kept thinking is there is an empty seat. The last time we flew to Disney Carolynn held Gabby the whole way. This time all we held was magazines. Carolynn came over and put her hand and my shoulder. After I stopped, Carolynn started crying.
Disney was tough; On October 9th 2006 we had breakfast with the princess’s in Cinderella’s castle. Six years later we took two not three sisters to the Bibbity Bobbity Boutique and then lunch with the princesses. I would love to say it was a good time, but I can’t. It was just so unnatural. The girls were all dressed up but you could see it in their eyes a longing for Gabby to be with them. I look at the pictures of Katie sitting in the salon chair and I can see a beautiful little girl hurting so badly.
When we went last time we must have rode it’s a small world 10 to 15 times. In the video Six Candles and No Cake, you can see Gabby sitting on my lap as we start the ride. I cried the whole time through the ride this time. We only rode it twice. Each time it hurt. Winnie the Pooh, Peter Pan all of these rides hurt. Looking at the Mickey hats, swimming in the pool, all if it tougher and harder than the last ride.
Carolynn and I tried to smile and not be sad. Sometimes we managed, other times not so much. About half way through we stopped crying and just felt numb. We all started to collect pins trying to keep our mind off of what was missing. While we were there, we kept Gabby with us by collecting pins and getting an autograph book signed for her.
While we were at Hollywood Studios I told Carolynn I wanted to buy something for a little girl. I was having a hard time deciding what to purchase when two children and parents ended up behind us in line. I told the casher we would buy what they had for them. One little girl had a cat stuffed animal and the other little boy had a stuffed animal pig. Their parents were shocked and very thankful, the cashier started to cry a little bit as well. We told them it was from Gabby and spread Gabby’s story a little further that day.
Gabby loved what she called” squishy princesses” basically little toys that came with little rubber dresses. I had bought one that was Minnie Mouse and was going to give it away. Carolynn told me to wait until later. As we were walking through the park Carolynn told me to give it to this one little girl she saw dancing. I asked the mother if I could give her the gift. Carolynn talked to the women and told her about Gabby and why we wanted to give her daughter this gift. It turns out the little girl was five years old, she has Down Syndrome, and her name was also Gabby. Wow!
While Carolynn was talking to this mother Gabby was looking at Katie’s Disney pins hanging around her neck. Katie took off her lanyard and put it on the little girl. She also told her she could pick any pin. Katie had been collecting one specific collection so I was shocked to see that she let the little girl take one of the pins from this collection she was trying to complete. I told Kate I was very proud of her. She looked at me and said, “Dad there are worse things in life than not having all the pins.” Amazing the wisdom that our eight year old has.
We had been collecting a collection of pins for Gabby. It was a heart pin with a princess holding a butterfly on it. We had found all of the pins except Ariel. We looked everywhere for this pin to complete her set. The last day we were at Hollywood Studios and we were talking to a cast member. She sent out an email to all of the cast members in the park. We were told to check back with them before we left the park that day. We did as we were told, but they didn’t have any luck finding this pin. We went to Downtown Disney that night as well and kept searching through cast members. I left my email address with a cast member who said she would do everything in her power to get us this pin. The next day as we headed for home, I got an email from the Disney cast member who stated that Mickey had made some magic and they found the pin. They were going to be sending it to us at home. Now Gabby’s set would be complete.
I also was collecting a certain type of pin and completed a set. The last night we were there I noticed a young boy and his father looking at my pins. He explained that he was collecting the same set and couldn’t find one I had. I took the pin off my lanyard, breaking the completed set and handed it to him along with a Gabby bracelet. To me it was a pin; to this kid it was a battle, a trophy, and a complete set that hopefully he will remember for a long time. Like Katie said there are worse things in life than not having a pin.
Filling the hole in your heart with stuff
The girls wanted everything! It didn’t matter what it was. In my mind I think they kept thinking that the next toy would ease the pain and make them feel better. I have a suitcase full of souvenirs that still has not been completely unpacked. It was hard to say no. They have had such a hard time lately and all we want to do is make them smile. But getting that smile from buying a stuffed animal isn’t going to keep it there long.
New memories that can’t be made
Lots of people have given us the same piece of advice. Find something new to do. Something you’ve never done before. There is a problem with that. Every new thing we do is a reminder of something Gabby will never get to do. We rode in a convertible while we were down there. It hit me that she never rode in a convertible and will never get to. I started thinking of all the firsts that Gabby will never have. Gabby never lost a tooth, will never know the joy of putting the tooth under her pillow and waking up to find a surprise from the Tooth Fairy. She will never get her ears pierced, never know what it’s like to go upside down on a roller coaster like her sisters did for the first time at Disney.
Someone posted I should start writing about all the good times we had with Gabby. They are so hard to remember. But I can remember every location where she threw up at the old house, every scream when they accessed her port, the look in her eyes when she tried to drink or eat something and couldn’t swallow it.
Even the good stories slip into a bad one. I took Gabby to Valley Forge Park one time, just her and me. I took her bike with training wheels so she could ride it. She loved riding her bike and couldn’t wait to get the training wheels off. (Something that she’ll never experience now.) We ate lunch in the back of my truck, she loved that truck, afterwards I took her to the Cabin gift shop and we ate ice cream. I miss the sound of her laugh and her smile as she ate her SpongeBob ice cream with gumball eyes. She loved gum! It was a great day! I loved sleigh riding in Valley Forge with her sisters, watching her scream as she flew down the hill. As great as those memories are I’m stuck on one. Right before she was diagnosed I took the three girls and their cousins on a hike through Valley Forge. We hiked up a huge hill. Gabby was having trouble going up the wooden steps. I kept telling her to come on. Finally I gave up and told everyone we were going back down the hill. Gabby was having trouble with that. Finally I picked her up threw her on my shoulder and ran down the hill. I remember being angry with her. Looking back at it I know now she must have been sick at the time. She had trouble with her balance. I won’t ever go back there.
Here and now
Last night I again realized she is never coming back, no matter how much I wish and pray, she’s not here. People tell me to write good stuff, happy heartwarming things. One-day maybe, but not today. I preach to all of you about loving your children and friends, about having patience with them. Playing with them when they ask. But I sometimes forget. I don’t sleep anymore. The nightmares are too bad. I’m always so tired that sometimes I say no. I get angry with the girls. They say they are bored and want to play. Yesterday I just couldn’t do it. I thought in my head, they are bored? I just wanted to yell at least you’re all alive! Of course I didn’t, I never would. I counted to ten went outside and came back in and smiled, and asked Maddie what she wanted to play. I love all my daughters and would never do anything to hurt them or say the things that float through my head. I realized grief and I have to deal with it. For the rest of my families’ life we all will think these things at times. How we deal with those thoughts is what counts. We did teach the girls a curse word in Disney. Even told them they could say it when they are with us. We told them it’s okay to call Cancer a Jackass!
We met with our attorney, are filing the final paperwork, need to make changes to the website. Have constant discussions of how we do this, how we make a difference. What type of fundraisers we want to do. I’m excited and scared at the same time. Get Well Gabby needs to change the world and we need to make that possible. For not just my Gabby but for all the children out there fighting for all those parents and family members, for everyone to make sure their children get to experience tooth fairies, upside down rides and school buses. We need to make sure that they only have good firsts and a parent doesn’t have to deal with accepting their child will never have a first of anything. Cancer is a Jackass and this month Get Well Gabby starts the real battle. Be part of it! For your children as well as the ones they will have one day. Help make sure you or no one you know will ever have to say they are in the ONCO family club. It’s a place no one wants to be.
Believe in yourself
Believe in your kids
Believe in the foundation
Believe in Gabby