Why I Still Trip Over Her…

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Day 21 QuoteDay 21
Why I still trip over her…
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We’ve done a good job of keeping Isabella’s thing in certain places. I know that if I need to feel her, I can go into her room and everything is just as she left it. After she died I had my Mom do a sweep of the house to get everything of hers in bins. I just couldn’t come home and see her book bag in the closet and her shoes at the bottom of the steps. What a horrible job that was to give my Mom now that I think about it. Even hospice came in and swept her existence away. Every single medication that I had to administer, vanished into thin air before she was even out of the driveway.

I have even gotten used to seeing Sophia in her clothing. She has worn it so much over the last three years that they are starting to turn from Isabella’s clothes, into Sophia’s clothes. Every once in awhile she will get me when she puts on her red boots or wears a swimsuit at the beach that fits her perfectly. Isabella’s junk was always on full display at the beach because she never had fat on her booty to keep it tight around her privates. Sophia’s bubble butt holds things in place and she looks like a gap model in the suits that hung on Isabella like she was a skeleton.

But there are still those times when something happens and it gets you. I can be making my bed and have my toes hit something from underneath. I look down and I see her pink Ugg slippers just sitting casually beside the bed as if she just walked in and took them off before crawling into bed with us. We splurged on those slippers because we did lots of walking in the hospital in PJs. $100 for kids slippers seemed silly but we didn’t’ blink an eye at the time.

Then I will grab a notebook to write something quickly and I open it up to find her handwriting. It’s never some heartfelt note to me that tells me how much she loves me from the grave. Instead it’s a note she is writing to one of her friends or a sign that she is making to hang on her door that says, “No Boys Allowed.” I lose my train of thought on what was so important to write because I get lost in a memory of watching her try to write, as neatly as possible, to all the people she loved when she sat in a hospital bed. “Make sure to give this note to Miss Chrissy for me Mommy!” she would say. I hate to think of how many of those notes I threw away because they just said things like “I love you Miss Chrissy” on them or something so simple.

Then it will be silly things, like looking for batteries and coming across paper tape. Only families with cancer will understand paper tape. When she would get her line accessed, the staff would always want to put this massive clear 4×4 bandage around it to keep it safe. While I appreciate the safety measures, getting that thing off skin is a bitch. Her poor chest was so raw over the years from these bandages that getting it off of her was a long painful process that involved lots of screaming and another procedure she would hate me for. In the end, we would tell the staff to use paper tape that was very soft and maybe not as safe for her line but we swore we would be careful, especially in those times when we were just wearing a line for a blood transfusion or a quick chemo. It would pull gently off her skin and we would high-five on how we outsmarted them all again as we walked out of the clinic without tears. All I needed was batteries one day, and that roll of paper tape slapped me in the face.

The longer it has been since she has passed away, the fewer times we trip over her without expecting it. In the beginning it happened often. But as time passes, we trip over her less and less. The times we do trip over her can drop me to my knees. It literally knocks the wind out of you and you find yourself drowning in a wave of emotions out of nowhere. Red boots, slippers, notebooks and paper tape. These are all things that I trip over that make my heart break all over again.

-Isabella’s mommy

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Slippers

 

Why I Should Be A Hospice Nurse…

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Day 20 QuoteDay 20
Why I should be a hospice nurse…

There are a lot of things I’m horrible at. I can’t keep my closet clean for the life of me. I’m not a good cook. I can’t grow a single thing in my yard…I could go on for hours on all the things I can’t do. Do you know what I can do? I can help people die with dignity.

I did it with Isabella and I was good at it. I refused to let hospice in after a certain point because I was in control. I knew what drugs to give and I knew by looking at her what she needed. I knew to keep things quiet and dark and how to touch her in a way that didn’t bother her. I think I did all this because she was my daughter and I had to do it. It was the last gift I could give her to make the process of dying as painless and fearless as it could be. It would be how I wanted to die so that is what I would do for her.

Once it was over, I put my hospice days behind me and made sure to tell my parents, “Look, not to toot my own horn here but when it’s your time, put someone else in charge of paperwork. You want me next to your bed.” It’s not really the thing I set out to be good at in my life, but here it was. I assumed my hospice days were over, until they weren’t.

I got Bailey when I was 22. I had graduated college and had a cat. I walked into PetSmart to get food for the cat and walked out with a dog. He wasn’t a great dog initially. Actually he was horrible, but I married the Dog Whisperer and Stuart turned Bailey into a dog that was possibly the best dog on the planet. He was never on a leash and he never left our yard. He would just sit in the driveway and watch people go by. People swore we had some electric fence but it was just that he was that good.

He was my shadow during pregnancies and he was the one that got up with me for midnight feedings. I would rock the kids as I fed them with him at my feet. The kids could take anything from his mouth or ride him like a horse. He greeted us each time we came home from the hospital as if we had been gone for years and was always so excited to just be with us. He loved us to pieces and we loved him.

After Isabella died it seemed he got older over night. He never came upstairs anymore and made our living room his resting ground. The hair around his face turned grey and his back legs became an issue. Occasionally he would collapse or have a seizure but the doctors would tell us that other than painful hips, he was healthy as a horse. We began having to help him get up and it became hard to watch as he tried to go down the stairs to use the bathroom. He would whine in pain at night as if telling us he was ready to go.

I was so afraid that something was going to happen when Stuart was traveling and I wasn’t sure if I could handle it by myself. Some nights I found myself just curling up next to him on the floor and speaking softly to him about how good he was. I knew the time was coming but I just couldn’t get myself to make the hard decision.
I finally made the call and settled it. I was going to let this dog that has been alongside us for everything die with dignity. I wasn’t taking him into the vet and putting him on a cold table. He was going to die in the house that raised him and I would be with him every step of the way. I settled on a date and started to get my mind right with this.

I brought him ice cream all week and took him on walks behind the house so he could think about chasing the squirrels. His mind wanted to chase them, but his body had other plans. That morning I made him warm cookies and sat with him on the floor as he ate them. I curled up beside him just as I did with Isabella and just kept whispering how sorry I was. He was just thrilled to have me on the floor with him and just panted and licked my hand until it was raw.

When the vet arrived, the first thing he did was call him by the wrong name. It took everything in my body to not show him to the door and tell him to improve his bedside manor. Stuart took over the paperwork and the vet walked us through the process. I laid Bailey’s bed on the floor at the bottom of the stairs and called him over. It felt like I was leading him to his death and he knew it. But he came to me as he always did. He refused to lie on the bed and just stood in front of me. The vet gave him a shot to relax him. Slowly but surely he began to relax. Instead of choosing to lie down, he pressed his weight against me as if to lean on me for support. I finally had to help him get comfortable and shift his weight off me.

Once he let his body settle, I just took his head in my hands and cried. I pet him and rubbed his ears softly as I whispered to him how much I loved him. By this point his head was completely weightless in my hands and I was laying on the floor in front of him looking into his eyes. His breathing finally slowed down and he fell asleep so soundly in front of me. I carefully let go of his sweet face and curled up beside him one last time. I knew that he was okay because of my comfort and I know that he felt safe with me next to him.

I sobbed like a baby wrapped around him.

The vet returned with what looked like an enormous white gift box. I looked at Stuart and he just said, “Why don’t you go outside.” I knew they were going to put him in this disrespectful box and I couldn’t watch it. “Erin, we all end up in a box at some point,” Stuart told me. I got up from him and left the house. I couldn’t watch them take another thing I loved out of my house. I didn’t want another memory of that.

Our house seems to be becoming emptier these days. There is no new baby in the house to replace her and no new puppy running around that replaces him. Instead his ashes sit in our living room just as he did all these years. I tell myself that if there is a heaven, she is riding on his back and laughing. He is right at her feet just as he was mine, protecting her. Two people to whom I have given the best gift ever in the end: safety, love and a death with dignity. How is this the thing I am best at in my life?

-Isabella’s mommy

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Why Sophia Is Obsessed…

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Day 19 QuoteDay 19
Why Sophia is obsessed…

Isabella hit a remission and we decided to have a third child because we knew Isabella would have trouble conceiving a child later in life. We thought if we had a baby girl, she could potentially use her sister’s eggs to make having children possible. Isabella was with me that day in the hospital when we found out she was going to have a little sister and she was thrilled. No more boys, I remember her saying.

Sophia was only 2 ½ when she came in to see Isabella for the last time and kissed her on the cheek. “Bye Bella!” she said and walked out of the room. I don’t even know where Sophia was as we carried her out to the funeral van. I don’t know where she was for most of it. All I knew is when she would enter the room, Isabella hated it. Sophia was full of energy and life and just wanted to play or curl up on my lap. Isabella was dying and all noises and movement were irritating to her and Sophia was at the top of that list.

I don’t have many memories of them playing together. I know they did because I have a few pictures and videos of it happening but none of them stick out in my mind. I know Sophia loved her bald head and would often times come up behind her and slap her hands on top of it or try to eat it. Isabella would scream and wipe the spit off her head, annoyed as always. Isabella always kept Sophia at a safe distance. She was a bull in a china shop at times and when you are hooked up to an IV pole that is the last thing you want running around you. I got it.

Now we sit back and watch Sophia grow up without her. She does so many things that are completely Isabella. The way she talks with her hands or faces she makes. The minute she does them I see her. Sophia of course has no idea that she is mirroring her and just dances out of the room. I even find myself laying with Sophia sometimes when she’s asleep and covering her hair to get a good look at her face, and I see Isabella again. It’s this amazing gift that Sophia gives us, a constant little reminder of our other little girl. I’m thankful every day for that.

I watch Sophia become obsessed with her in her daily life. It gets scary at times to watch her be so consumed with everything in our house that is Isabella’s. She wears HER clothes, she watches HER High School Musical Movie on HER iTouch, and listens to HER Taylor Swift CDs as she falls asleep in HER bed, on HER Pillow Pets with HER blankies. I have to go into Isabella’s room each morning, open her door and hear that same creak in the door that I heard for years when waking her for the hospital. I have to go over to her bed and see a little girl in kitty pajamas, covered in pink blankies and wake her. But instead, this healthy little girl has hair… this time it’s Sophia.

For Sophia, Isabella has become the ultimate role model. She sees pictures of her doing amazing things with this bright red hair and her big smile. She sees her enjoying every minute of her life in pictures. Sophia doesn’t know Isabella with cancer or being defeated. People talk so positively about her with admiration. The story of Isabella has been built up over the years so much that Sophia wants to be just like her.

I wonder how her love for Isabella will change as she gets older. Will she start to resent her because she has so much of the focus? Will she feel like she can never live up to her? Will she realize one day that she died and she lost a sister? Will she ever go through a grieving process? Do I even want her to?

Counselors tell us that Sophia will develop a relationship with Isabella based off memories that never happened, and we will need to support that. A relationship built off lies.

I’m sure if Isabella were alive today, they would be doing lots of fighting but lots of laughing too. Luckily for Sophia, even though she lost a sister – she has a brother that has stepped in and become everything she needs. Grant saves her every day. He is a big brother and big sister to her and Sophia knows no other life but just the two of them together. For Sophia, Isabella is just a character she knows from television who someone once told was her sister.

-Isabella’s mommy

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Why Do I Write…

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Day 18 QuoteDay 18

Why I write…

I’m not supposed to be a writer. I was a business major with a specialization in computers. I was horrible in English class. I probably plagiarized the majority of my papers in school. My sister was the creative one. She would take summer camps on creative writing while my cool friends and I were out chasing boys. I never even really kept a diary. Who has time to write? I don’t even read, other than the casual In Style magazine with a glass of wine on the back porch. My husband got me a kindle a couple of years ago and I think I have read three books on it since I powered it up.

When I talk about my feelings it’s direct and to the point. Which is what I hear my writing can be at times. I have a sailor mouth and find humor in my flaws and the situations I find myself in. It takes a mountain to really embarrass me and I have a quick wit. I am not the friend that you have that will sit for hours with wine and ponder over the issues in the world. If I have a cry, with a friend is rare, brief and ends just about as quickly as it starts. These are some of the traits that attract me to more men friends than women sometimes. Or the women in my life have to be quick, unemotional and lack sensitivity to hang in my circle.

This whole thing started as a way to communicate what was going on so that I didn’t have to send out emails and make phone calls. It was my way of figuring out how to talk to people less. Imagine that. But then something started to happen. I could vent my frustrations and talk openly without anyone talking back to me. I often times don’t care much for other people’s opinions on matters in my life so this was the perfect medium for me. I could say what I want, then close my computer and walk away. I loved it.

One day something just happened. I began writing and forgetting that everyone was reading it. I never let anyone read anything before I publish it so I began to forget people were even out there. Then once I realized that she might not pull out of this like we thought, it became a time capsule of our life together. I didn’t care who I offended with language or off the cuff remarks. This was about my experience and my life with her. It began to take on a mind of it’s own.

I look back at my Caringbridge and wonder how I was ever able to write it. I get irritated that I didn’t write every single day. Even if it was basic stuff about something that happened or something funny she said. My memory is long and deep, but it’s the uneventful days that have slipped from my memory. I read the last year and it’s hard to walk away from. I honestly don’t know how any of you read it. There was so much I left out too. Every once in awhile my fear of feeling exposed with cause me to delete something that should of stayed in the journal. I regret that now.

I would find myself lying in bed at night, not able to sleep. I would find a quiet place in the house and vomit out these words that were in my head. The moment they were captured, I slept like a baby. It was then that I realized that writing was my therapy and at times the only friends I had.

After she was gone it seemed to be all that could console my grief. I tried the grief counselor route. For those of you who don’t remember that delightful experience, you can read it here. 

I just wasn’t fitting into the normal way of grieving. I didn’t want to talk to a stranger about it and I didn’t want to go on medication. So instead I wrote and it worked. It allowed me to feel like I was still talking about her or sometimes even talking to her. It also allowed me to develop friendships that weren’t based off talking about her all the time because I was taking care of that on my own.

I take breaks from writing because I feel like I have nothing to talk about. I was actually dreading this September because I knew everyone was waiting for something amazing and I honestly didn’t think I had it in me. But after a few days with just my computer, and me it starts to flow like wine. (Which is sometimes a part of the writing process too.) Starting to write again reacquainted me with an old friend. The first days were rocky, but we fell back into a groove and are thick as thieves again.

Not sure where the writing will go. I would like to print out everything I have ever written and take it to someone. Slap it on their desk and say read all of this and then tell me what to do with it. Do I write a book? Do I try to write for a column? Or do I just keep this as a hobby? Some days it’s good conversation, some days it’s conversation that is some breakthrough I didn’t expect. All I know is that it heals me and fixes some of the broken pieces of my heart. Its just another thing that cancer has led me to that I never thought was possible for me. I’m just trying to figure out what to do with it before I regret doing nothing with it.

-Isabella’s mommy

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Why People Divorce

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Day 17

Why people divorce…

It’s funny the things you are told at different times throughout this process. Certain ones stick out, like the first time you are told a cure rate, or when there are no options left. But after the process is over, you start a whole new journey and people don’t really know what to say, so sometimes they say things that make you take a step back and you can’t forget them. When I was talking to a grief counselor after her death, the counselor told me that parents who have lost a child tend to take one of three paths after the death:

  1. They have a baby.
  2. The pick up and move away.
  3. They get divorced.

I was not planning to have any more children and I wasn’t planning to move away either. So does this mean that I’m headed for divorce? I started analyzing these scenarios and the longer I go into this process, the more I understand how these roads are taken. I get the baby piece. Our house does feel very empty these days and if I were younger, I could see trying to fill a little bit of the void in these empty bedrooms. I think my vagina would tell me, “Get real you old bag of bones.” I can understand why people move away. Sometimes you want a fresh start. You want to go somewhere where people don’t know your tragedy and you aren’t tripping over the memories of your dead child everywhere you turn. You don’t have to watch their friends grow up and see all the life events they should be a part of. I get it.

Divorce.

I’m so thankful that people weren’t watching Stuart and I under a microscope during the years of Isabella’s treatment. It wasn’t always pretty. You chose this person to spend your life with, and in many scenarios you pick this person because they are so different than you are. They “complete” you, as Jerry McGuire would say. But what you aren’t prepared for is how different this person is from you in a high-stress situation. And have that high-stress environment be life or death, and have it last for 5 years.

Stuart handles stress by wanting to talk through a MILLION different scenarios. What if this happens, what if that happens…so on and so on. I’m a little different. I like to crawl into the hole that is my bed, sleep, and not talk to anyone. He would want to talk to me until he was blue in the face, but I wasn’t interested in listening or talking. I wanted to be alone and I wanted it to be quiet. So many times during her relapses, you would find me in a dark room for days. I would shut everyone out and deal with the pain and fear alone. Stuart would be cleaning out the garage or organizing the kids’ spring clothing. He needed to keep his mind busy because I couldn’t help him.

I always compared our journey together like being two hamsters in that big clear ball. You put them both in together and see what happens. One starts running one way, and one starts running the other or one of them doesn’t want to run. The ball has trouble moving because the two hamsters are inside flailing around. In the end, one hamster probably kills the other one and eats it. Welcome to a marriage in the world of children’s cancer.

Your marriage ends up having issues that have to be swept under the rug because you don’t have time to deal with them. You hit a remission, you pull these ugly skeletons out from under the rug and they are bigger and nastier than they have ever been. The slightest comment from either of you is like sandpaper to the other and you are just rubbing each other raw in your day-to-day life. You know that you should cut the other person a break because they are dealing with something too. But you are too selfish to do that, and so is he. Add the fact that my Mom lived with us too added to marriage stress. Chew on that!

Then she dies. What the fuck are you going to do with each other now? And who are these kids that someone else pretty much had to raise the last couple of years? Now you are all left as strangers together.

The grieving process comes in waves for each of us. When one is grieving the other one isn’t. Stuart has a hard time pulling it together around Christmas and I get pissed because it’s ruining the day for all of us. I have a hard time around her birthday because I actually gave birth to her and remember every stinking thing around the situation. I spend this day in bed while Stuart mows the lawn. Grant’s grief comes out of nowhere and slaps us in the face when we walk in and see him watching our PR video and sobbing. We are all on different paths and need to be consoled by people who can’t console themselves, let alone help another person.

Even now I find that I have become so closed off and cold. I barely need anyone or anything in my life. Stuart however has gone the opposite way and has a large need for love and attention. I want to be left alone and he wants to be swallowed up whole and smothered by love. And we both go through times where we have trouble being in this house or getting out of bed. So what do you do?

I guess people divorce because what they need is impossible to get from their partner but their partner is so broken. But who wants either one of us? Who wants to deal with the hot mess that each of us has become. So instead you stay together and keep telling yourself that we will somehow come through the other side of this. We are bonded for life from this experience. Every day you think, I’m going to work on meeting them in the middle, they deserve that after all they have been through. Each year on our anniversary I feel like we toast each other and think, “Who would have thought we would be here?” But we are. Still standing, but wounded and holding on.

-Isabella’s Mommy

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Stuart and Erin Wedding