This Picture was taken one week before Gabby earned her wings. After we removed all the hoses, needles and everything else that was in her during her last stay in the hospital. Carolynn and I took turns just holding her. I thought long about sharing this photo. She is so weak, defenseless, but I decided to share it hoping you would understand why we are determined to make a difference, why Gabby will make a difference. The doctors told us she might not have long. We didn’t believe them. She was a Vogel, she was a fighter, and she would survive. Gabriella Martha Vogel is my Hero.
Gabby was so different than Maddie and Katie. She would tell you how it is. She would come right out and say NO I’m not doing that. And no book on 1-2-3 Magic would work to convince her otherwise. She also had a heart bigger than my head. No matter where we went if she got something and her sisters weren’t there, she would remind us that we should get them something. She was never super materialistic, was happy playing with whatever and whoever was in front of her.
One of the most beautiful things I ever saw her do happened when she was sick. Here was a little girl who was drinking the poison called Chemo every morning, Here is the little girl that was dealing with radiation, Physical Therapy and countless other medications and procedures that I won’t share. All during this I saw her do one of the most thoughtful unselfish things a child of five could possibly do.
Gabby loved a new toy called Disney Princess Babies and Princess toddlers. I remember sitting at the kitchen table as she looked through a magazine saying: “ I want this one and this one, and this one. She collected them. A little girl named Rebecca in the neighborhood also collected the babies. We were at target one day after radiation and she saw a Tiana Princess Baby from the Disney movie The Princess and The Frog. Now what you have to realize is Gabby didn’t have this one. She pointed at it and said Rebecca needs her. I explained “ but Gabby you don’t have her” It didn’t matter Gabby wanted to get it for Rebecca. When we got home Gabby wasn’t feeling well. She wanted to go give the doll to Rebecca. It was the middle of July during radiation treatment time, it was hot. We put gabby in the stroller and walked to Rebecca’s house. Gabby handed her to Rebecca. Just like that. No thought to wanting it herself, she just wanted to make Rebecca happy. On the way home Gabby got sick. But she didn’t care she did something that day that made her happy. That’s my girl, My Hero.
This part of the post is not to justify the coping mechanisms people use in dealing when things like this happen. It’s my opinion and experiences. Hopefully it will help those starting on this journey, and those that aren’t on the journey maybe it will give you some understanding of the situation.
Even though we were home after the first month we were still invisible. The girls went to Girl Scout camp the last two months of the summer. Carolynn and I were driving to Chop most days before they woke up and attending to Gabby all night. Whether it was cleaning up vomit, dealing with headaches, feeding, changing or enemas. We were always doing something. It was truly a horrible time for them. They lost their parents during those months.
After Gabby earned her wings they coped by wanting things. Toys, games and more toys. They would get them and realize it didn’t make the pain go away and ask for another one. Trying to fill a void that couldn’t be filled.
Today we try to keep them busy, art, reading, hikes, movies, just talking. They are starting to understand that toys won’t work.
Carolynn is a different person now than she was before this started. She does not have time or interest in the same things that she used to really enjoy. Baking has become a chore instead of a fun activity. Scrapbooking materials have been boxed away and she does not want to look at them any time in the near future. When we were still in Phoenixville, Carolynn preoccupied herself with the chore of getting the house ready to move and packing. When we closed on the house in Delaware, she focused her energy on the new house. Now that there is no house to focus on, her focus is on the girls, the dogs, and trying to help other kids and families dealing with the same thing we went through. When she has her down moments (which happen often) she normally goes into another room and cries until she can’t cry anymore. She cries with the girls and with me. She needs hugs from all of us especially Posey. She feels there is some of Gabby’s spirit in Posey and she can sense it from time to time. She has read tons of books about death, heaven, and how to deal with children and death. She is part of an online bereavement group specific to DIPG. When she really needs to get out, she goes shopping. If you know anything about the area we live, there isn’t much shopping this time of year. It normally ends up that she goes out with the intention to hit a few stores and they all close before she gets to more than one. It’s a good way to save money!
Carolynn had a binge when Gabby first passed with drinking. I think it helps to ease the pain and help you forget as well as help you pass out. This didn’t last long for her. I bought her a case of Mike’s Hard Lemonade and we moved the majority of the case with us to Delaware and it still sits in our fridge.
Carolynn went to see our family doctor when Gabby was first released from the hospital to get an anti anxiety drug. Over the next few weeks, she had to go back a few times so the doctor could be sure the dose and prescription was right. By the third visit the one drug prescribed to her was tripled in strength after the doctor learned that Gabby had passed away. She is starting to wean down the strength but will not give it up yet. It helps to keep her mood flat and not have any crazy outbursts at the kids or myself.
I have sat it support groups and listened to people say they lost loved ones and turned to drinking and never came back or weren’t able to stop. When Gabby was diagnosed I came home one night looking for alcohol. Now in college I drank, and after college only occasionally. Carolynn got me a case of Stella’s last Valentines Day; in May when Gabby was diagnosed ¾ of the case was still in the fridge.
But when I left the hospital that night I was determined to have a drink. When I got home I saw my mother and father in law cleaned all the alcohol out of the house. I was furious. I love them dearly and understand why they did it. However they forgot one thing. I was 37 and could just buy more. While she was sick I drank. I wasn’t out of control and I only drank when the girls where in bed. A beer here and there but nothing-extreme most nights. There was no time for hangovers when dealing with a cancer child.
The night Gabby earned her wings, after I carried her out to the stretcher in my arms. Put the sheet over her head and kissed her. I came inside and made a Jack and Coke. I got drunk, I passed out, and I threw up in a clothesbasket. I know this sounds horrible but nothing about what happened could be explained and I lost it. The next day we had to go to the funeral home and make arrangements. After that when the girls would go to bed I started drinking nightly. Jack Daniels became my best friend. At first I would only have one or two drinks. This gave way to three or four. Eventually I was drinking a bottle a night. I know it sounds unbelievable but I was. I started to get scared because it got to the point that the night before I would drink a bottle and wake up with no hangover. I knew this wasn’t the answer so I stopped drinking back in November. It was how I coped then, I moved on and forward.
I tried drugs in college (it’s okay I don’t plan to run for president) I could never truly turn to those now. I just need clarity. I have had friends in school that would smoke pot nightly. I couldn’t do that. I like being sober and clearheaded too much. But if you choose to travel this path I’m not the one to judge. Just remember eventually you have to wake up and realize you should try something else.
I never liked taking medicine; don’t like the idea of being dependent on anything. However after Gabby passed and even before I started taking medication. I am a firm believer it helps and admitting it shouldn’t embarrass you. When something unfathomable happens the mind can’t deal with it on its own. Help is needed.
What can I say I play video games nightly after the girls go to bed? It helps me only focus on that and not what has happened, an escape from reality. I went crazy and started buying games left and right. I still have some unopened that I still haven’t played. Like the girls I felt the next game I bought would be the one that made me feel better. I stopped buying them (okay I do have an occasional relapse and buy one from time to time, but in my defense they are always pre-owned and under $10.00)
If Legos weren’t so expensive I would probably have a houseful of them. Don’t worry I don’t, they are too darn pricey. But building them helps. You focus on working with your hands, piece by piece. I get lost in the task. Afterwards I just feel good that I created something. To bad you can’t buy preowned Legos kits like you can buy pre-owned video games!
I love sitting outside watching birds with a book trying to identify them, draw them and take notes to look up later, trying to figure out what it is by it’s call. It works for me.
I have always been a big reader. All of us are. Every night before bed we would sit down and read as a family. Carolynn or I would read to Gabby, The girls picked their own books. We have done this with all our girls. Kate actually learned to read the year before kindergarten! Love to read Hiaasen, Christopher Moore, civil war books you name it. Lately however I started a run on novels based on guess what? (Video games)!!! Hey at least they don’t have pictures.
Started watching all types of horror and zombie movies. The cheesier the better. A lot of foreign ones as well. I think as I focus on reading the subtitles I am less in danger of drifting off to unpleasant thoughts.
So what does this all mean?
Basically for those that having loved ones going through this remember don’t try to figure it out. It’s impossible. Be there to listen, understand and support when needed. My family and my in-laws have been great after Gabby passed they didn’t judge or step-in they are letting things run their course.
If your going through this just remember do what you need to do to cope, to survive, to get to the next day as long as you’re not hurting anyone. Don’t feel the need to apologize. But in the back of your head always remember nothing lasts forever and eventually you need to find your way back no matter how hard it may be. Last night and this morning I was in a dark place. I sat outside looking at the sky asking myself: How is it possible I’ll never see or hear Gabby again while I’m alive? I haven’t found my way back. Sometimes I go backwards. Other times I leap forward. The only thing I can hope for is that over time I am closer to where I was than where I sank to.
Foundation and work
I want to talk about the foundation again. If you read my posts you see I never really ask for a lot. Prayers, support and well wishes. But when it comes to this I’m asking. The paperwork for the foundation will be filed hopefully Thursday. Please support it. Please donate if you can. You will make a difference. Gabby will make a difference!
Carolynn and I still haven’t found work. Living off of savings and hopefully something will come up soon. But in the mean time we are putting everything we have into making sure this works. A friend said to me once, if it works the foundation can become yours and Carolynn’s career. I would love to spend my days doing something that matters, helping your children, your grandchildren, and your neighbor’s kids. I don’t know if that will be possible without all your support. I told Carolynn today I don’t want to make Gabby a business. But I’ve come to realize I’m not doing that. She is the driving force for a cause. I do this for her most of all. She is not a statistic, she will matter, and she will make a difference. I can assure you, Carolynn and I are tenacious and will make sure we don’t get lost along the way. We will find the right places to send the money; we will find the families that need the most help. Gabby and your help will change the world. I hope next year I’m writing saying we donated over a million dollars to the cause. Please help that happen. My daughters are on board; we have already started planning fundraisers. I give you my word we won’t stop; we will always be someone you can turn to. I don’t care if you need to borrow my car to get your child to chemo treatments, I’ll drive you. Get Well Gabby needs you and the world needs Get Well Gabby.