If you’re going through hell, keep going. ~Winston Churchill
Here we are. It’s been almost three months since my Gabby earned her wings. I can’t seem to remember most of those three months and that simple fact scares me. I keep trying to remember what Gabby sounded like, what her cheeks felt like, how her hair smelled. But no matter how I try I just can’t seem to hear, feel or remember the smell. I found one of her socks in the hamper, after all this time it missed getting washed. I put it aside, afraid to lose some piece of her. The other day I found little pink pillow in the shape of a princess tiara, Gabby laid on it in her stroller on the way to treatments. I raised it to my nose and could smell her. Carolynn did the same. People talk about “The new normal” Well welcome to “new hell”.
Everywhere and her sisters
One night we were all sitting at the kitchen table eating dinner, the girls were laughing. I looked around and smiled for a second just happy to hear them. Then it hit me again like a speeding train. There are only four of us eating dinner; there will only ever be four of us. Gabby should be here giggling as well; she loved to laugh with her sisters. I looked over and saw Gabby’s empty chair…. It will always be empty. Think about that for a minute. Imagine a world where your child, your loved one will never be sitting with you again. There is nothing normal about that. So for the people that have said negative things about my family and how we are dealing with life, take a second and imagine these thoughts going through your head hourly.
A woman left a message after my last post saying she felt sorry for Maddie and Kate. She explained she lost people as well and couldn’t believe we would uproot the girls and why were we getting rid of everything that had to do with Gabby. Obviously she was confused we haven’t and won’t get rid of anything. Her chair, clothes, toys, books. We have it all, we kept the minivan and everything else. We could never part from it, part from her. She’s everywhere, every place I look I see her. She feels sorry for the girls? Well darling if you’re reading this so do I. Not for the same crazy reason you think but rather a real sane one. I feel sorry because they are children missing their sister. Missing the piece that completes their sisterhood. Carolynn and I are adults, we can understand what happened (not accept). But Mad and Katie are lost trying to make sense of it. Maddie won’t talk about it, Kate is angry all the time. We are there with them every day, we haven’t checked out. We put on our masks and guide them, hug them and love them.
No one should ever think these things
Before Gabby got sick I never thought about cancer. Never thought about sick children. When people asked for donations I didn’t always give. I thought I needed the money for my family. I hate that old me, the clueless me.
Whoever thinks their children will get sick and die? Not me. When each of our daughters was born people would ask: Do you want a boy or a girl? The answer was always the same: As long as their healthy it doesn’t matter. Well that answer has a whole new meaning. Now I would answer: As long as their healthy and stay cancer free for their entire life. Cancer is real to me now, I can’t escape it. Like Gabby it’s everywhere as well. I look at my other two daughters daily and ask what if they have it, what if they get it? What if I or Carolynn gets it? Before it took Gabby we were untouchable, it could never happen to one of us, it only happened to others. Cancer didn’t exist in our world before May 31st. Now it’s a source of constant fear because it did happen to one of us and can happen again. No one should have to live with that fear. Katie asks either Carolynn or I to check her for a fever every hour. I think it’s because when Gabby was sick they knew how bad it would be if she had a fever. It would mean another trip to the ER, another stay on the oncology floor. I would give anything to get her to not know these things. I would give anything to have her be a little 8 year old little girl who believed nothing could take her away. But the truth of the matter is that it can. Maddie is 9 and worried about dying. How F@#ked up is that? Cancer didn’t just take Gabby; it took pieces of us as well.
Another thing that goes through my head is without a doubt horrible. We have met a lot of families, a lot of sick children. We would never wish this or anything that happened to Gabby on them. But late at night the mind wanders. I ask myself why did Gabby get under 3 ½ month and others get years? I know people will be upset with this but I ask myself it. People will say: she’s no longer in pain, she is happy now. I hear this and think: really? What about us? I wanted more time with her! We were in Toys R us one day after she got sick. We bought her a few things, and she wanted another princess doll. It was $50.00 I said we couldn’t get it that day and we would get it next time. There wasn’t a next time. I should have gotten her everything she wanted during that time. Even then I was still living the life of that nothing could take her away from us. We would always have a next time. I have forgotten her smell, her voice and her touch but I remember every time I said no to her or didn’t play with her during that time. Why was her time so short? I realize it’s selfish but I ask myself would I want her longer even if she was sick. And I’m ashamed to say yes, I would even for a minute just to run my hands through her hair to move it from her eyes.
I wrote something a while ago on how important pictures were. Now I look at them and am constantly looking for signs of her illness. DIPG takes away the ability to smile, or at least changes how the child smiles. There is a picture taken at my mother’s at Easter of Gabby and her sisters. I can see that her smile had changed then. The monster was in her. Another picture the week before the hospital, Gabby had her face painted like a Puppy. Her smile was slipping away then as well. I don’t know why I do it but I keep looking at old pictures looking for something that I know can’t help.
I would ask Gabby to give thumbs up. I look at those pictures from the beginning of her diagnosis to the end. The last one is driving to the ER when we cut her only vacation short. I asked her to give me a thumbs up and if she did, I tolde her she would get an M&M Blizzard when we got to the hospital (by the way when we got there the ice cream machine was broke at CHOP). She gave thumbs up. I look at that picture and see an extremely sick little girl. The light had left her eyes. But she did it anyway because I asked her to. I sit here typing this in tears because I want my little girl back; I want to see that light. It should never have left and I was powerless to stop it. All I could do is ask Gabby to take a picture. When I should have held her hand and kissed her head.
Thanksgiving wasn’t easy, Christmas is harder. Carolynn put up lights today, I couldn’t help her. I chose to cut the grass. Get lost in the sound of the engine. Every year we put up the tree it’s always the same. I put the tree in the stand, Carolynn does the lights and we hand the ornaments to the girls to hang as we unwrap them. Gabby always puts 5 to 10 ornaments on one branch always across the bottom two feet of the tree. Then I lift Gab up to put the star on the tree. After the girls go to bed, we fix the ornaments and then I hide the pickle ornament in the tree. The first one to find it gets a small prize. After that I hide it two more times so they all get a prize and usually have to help Gabby find it. She is always so happy and proud when she does. She screams “Maddie, Katie… I found the pickle!!” But that was the last five years. This year I’ll only hide that pickle twice. How do we face even putting up a tree? When we saw Santa this year Katie would not tell him what she wanted. We already knew, it’s on her Christmas list at the top, Gabby! After St. Nicholas day Katie and Madison told Carolynn they didn’t want presents this year, they only wanted Gabby back. I’ve never wished for a day not to come till now.
Fear and Forward
3 months… seems like 3 days… We are here in a new place trying to cope. But the fear of the future followed us. Neither Carolynn nor I have a job, we decided to take a month off during the holiday’s. I’ve been looking in Bethany, Rehoboth, Lewes and Ocean City and still haven’t seen anything promissing. (If anyone knows anyone down here looking I would gladly talk to them, no matter what the job is.) Carolynn is optimistic, she feels it will be alright and something has to go our way. A few weeks ago I totaled my truck, in January it would have been our last payment then we owned it. Again welcome to the new Hell where nothing seems to ever go our way. So now we need to find another car which mean new payments. Just another thing for me to fear. I know some will say stop pitying yourself and just deal. I’m not pitying myself, I’m sorry I just want to go a week or so with nothing bad happening. I don’t think that is too much to ask.
Even more Forward
A small portion of Gabby’s story will be on the American Giving awards on NBC on Saturday December 10th from 8-10pm EST. It has to do with a great organization called Wish Upon a Hero and how they helped my family.
A friend has also talked to NBC producers about Gabby and her story and there are plans being put in place to discuss doing a one hour show on either NBC Dateline or Brian Williams’s new show about Gabby and Pediatric cancer.
Our main goal now is to help our two daughters, also we are going to make sure Gabby’s foundation is up and running by the New Year. Our new focus in life is making sure her foundation grows and keeps growing. We won’t rest till the name is spread throughout the world. She isn’t a statistic, She will make a difference, she will help these other fearless warriors fight this fight through raising money for research, awareness and helping other families in need. We won’t rest until we live in a world where no children have to worry about fevers and death, we won’t rest until the word Cancer doesn’t exist in their world.