Quiet time can do wonders for motivation. My days are not filled minute by minute with ISF, race details or meetings so I’m enjoying the quiet. I think more and more about writing every day and have set a goal for myself to eliminate anything that is preventing me from starting the process. The one hurdle in front of me is revisiting the past. It’s one thing I try hard not to do every day because I need to keep one foot in front of the other. But I knew in order to move forward, I would need to look back.
So here it is.. my three volume Caringbridge hard bound book series. When it first arrived, I was stunned. Did I really write 3 textbooks? No.. I didn’t. I wrote one textbook. The two remaining textbooks were pictures, guestbook entries, etc.. Thank goodness. Otherwise it felt like a Hunger Games series or something. I kept telling myself that I needed to read it. But, I didn’t want to read it casually here and there. I wanted to devote the time that it needed, that meant quiet time. No kids, no TV, no nothing. But finding that time can be hard. So it became the hurdle that was preventing me from my larger goal. Until about a week ago…
Enough was enough.. I started plugging through.
The beginning was an easy read. Keep in mind that I was a business/tech major in college. My sister was the art major who took creative writing workshops over the summer. (What a dork.) The first year was more of a diary of sorts and shout-outs. We did this today, she felt like this.. so and so came to visit. Blah blah blah.. ZZZzzzzzz.. It was just a way of me not having to update everyone at Target when I was buying diapers.
Some of it was like watching a movie that I had seen before. I knew the outcome before the scene even happened. There were parts when I had to read with one eye closed because I knew what was leering just around the corner. Come on Erin.. those headaches were causing so much pain that they were making her throw up! I would say these things to myself. But my character in the book was oblivious to the symptoms or the manhole she was about to fall in… otherwise known as brain tumors.
I read how Isabella was so innocent in the beginning, taking it all in stride. None of it really bothered her. I actually think that she enjoyed it at some points. All the snuggles and alone time that she received. All the gifts and visitors and attention. What 3 year old doesn’t crave this? We moved our entire family up to Manhattan and lived a new and exciting life for periods of time! Brain surgeries and radiation sure, but sprinkled in it were weeks upon weeks of sharing a bed with Mommy and Daddy and all the pasta she could eat. Not so bad if you ask me.
We had quiet times that we thought were quiet.. but in fact they were not. They were just bridges between relapses. We would think that our lives were becoming normal but we lived in a constant state of fear every day. Everything in our life revolved around 3 months of scans that would be like rollercoasters of emotion. A clean scan would allow 2-3 weeks of calm but then the coaster would start to ride up the track as she complained of a headache here, a leg pain there.. all leading you up to the top of the hill when you are about to explode from anxiety, heartache, pain and nerves. CLEAN SCANS!! Your coaster would roll down the hill.
We jinxed ourselves so many times. How stupid of us to release balloons at the end of her brain relapse treatment only to relapse 3 months later. Making a big deal about saying goodbye to different treatments.. Silly for us to think that we would never see them again. 6 months later we are back on the calendar for another dose of a treatment we told her was her last. Just a series of lies we told ourselves.. and told her.
It’s funny because people tell us all the time how amazing we were, how inspirational as parents, yada yada yada.. But after 16 months I see the clouds parting and read what you all read. At one point I built up confidence and began leading instead of following. We discussed treatment options instead of received them. We took breaks when we needed them because we knew it would make her stronger even if the doctors disagreed. At one point she received a chemo called “kitchen sink”, meaning they threw everything at her. It just about killed her. But sure enough, she recovered from it. They wanted to hit her again but we said to wait.. she was going to Disney World first. And we did. We freaking took her to Disney World in between kitchen sink chemo. A week prior, she couldn’t get out of bed and she wasn’t eating. But 7 days later she is riding “It’s a Small World” and swimming at the pool. We were maniacs!
I got smarter and began to know my daughter. I knew how her body would recover, how her counts were going to be before they even pulled them. I knew what meds to give her and pushed out anyone that didn’t know what they were doing. The squeaky wheel got the grease. I assumed my picture was hanging up somewhere in the doctor’s office like someone who wrote a bad check. “Watch out for this no it all.. “.
Isabella was developing into a little girl beside me. She knew that I was on her team and Mom would do anything and everything to get her out of the hospital. But in this process she began to lose control of things and began to rebel. It was such a hard time for me because I felt like I was fighting the fight for her every day and she was fighting me back. It was like knives in my heart at times. I know she was just looking for something to hold on to as well but it didn’t make the pain any easier. At times I felt like I hated her because she didn’t get what her cancer was doing to me too – or maybe just didn’t care.
She’s clean and then she would relapse. She’s clean again.. and then she would relapse. This cycle continued for years. The ups and downs of putting her through things – thinking that this would be the thing that saved her. But then receiving the news and having to tell her as her lip quivered that she was sick yet again after all she had been through and her beautiful hair that she treasured would once again fall to the ground.
It was 5 years of giving her the most amazing gifts in the world and then taking them away again. The cruelest life at times for all of us. I remember her freaking out once about getting her line and having to tell her that if this line didn’t go in, she would not get the medicine she needed and she would die. Can you imagine that? Sure, we tell our kids to wear seatbelts because they could save their lives if they were in an accident but this is different. Holding her arms tight to her sides and looking her right in her eyes as tears fell down my face. YOU WILL DIE IF YOU DON’T DO THIS. Shittiest thing I have ever had to say in my life.
I read a point in the book when my writing starts to change. It’s not retelling a day’s events. It becomes writing out of fear. I think I started to know how the story was going to end. I lost confidence in the drugs and knew that in a certain number of months or years.. all I would have left of my daughter was this book. I began to dump my dreams and fears into it because I didn’t know what else to do. But as the author I can read through the text. I tried to write as if no one was reading but I knew.. Some of the things I wrote were just too PC. People felt like I was pouring my heart out to them but I was holding back so much it’s disgusting. I’m not sure what people would of done if I wrote all my true feelings. That’s still hard to do at times for me out of fear. It is the one thing I have to learn if I try to accomplish this goal of mine. Write and not care at all. Write all the truth.
I accomplished this goal on Caringbridge only in the last month. I always had a small percentage in my mind that thought she could pull through. That she would be the miracle that everyone told me was going to be. She kept beating the odds so it was still a dream that could come true. But in May of 2012, the cancer was up and down her spine.. Watching her body give up. That small percentage went away. She was ready and I was ready. Stuart and I question ourselves all the time if we were all just got too tired in the end and all stop fighting together. Maybe it was the science; maybe it was wrong decisions… who knows. But in May – we cut the cord and watched her die.
I read the entire journal without crying until that Memorial Day trip. She stopped getting out of bed; she started to have vision issues. The cancer was all through her just eating her alive. I wish so badly that I could go back and shake myself that last month because I knew it was happening but didn’t REALLY know. I would watch her lay in bed and reach out to things that weren’t there, talk in conversation that didn’t make sense.. she was dying right in front of me and I’m not sure if even then I understood it.
How in God’s name I was ever able to write in the journal about what was happening to her. Even up until she died I was still thanking people for meals or trying to get people to donate to research. WTF? Instead I wish I were documenting her every breath so I can watch the horrible movie over and over and see her so clearly. I thank GOD every day for the journal I wrote on Thursday, July 5th… one of my last. That entry is all real and I had no fear of writing that. It was raw and honest and I sob until I am shaking when I read that. I can see it all as if it were happening right again in front of me. And that is what writing should be.
After I composed myself, I went to pick up Sophia at Calvary. I got out of the car and walked up to her name plate. I put my hands against it and pushed as hard as I could for some reason. I don’t know what I was doing. Trying to move the monument? Trying to bust through her plate to her ashes? Not sure. All I know is that I hate that all I have left is that stupid book. A book I will cherish forever.