Why Sophia Is Obsessed…

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…

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

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.


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



Stuart and Erin Wedding

Why I Fought Her

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Why I fought her…

There are so many things you regret after your child passes away. Should we have done this treatment instead of that one? Should we have tried another hospital? Did I miss some symptom that would have prevented all this from happening? Did we get too tired to fight in the end? A lot of questions around her care become shadows that cast over your life forever.

You also find that people look back at relationships with rose-colored glasses or they beat themselves up over everything. I tend to beat myself up on my relationship with her. We probably experienced so many touching moments between the two of us, maybe more than I can count. But in my mind, all I remember is fighting with her.

When we were first diagnosed, I remember being in the hospital and listening to all these horrible children screaming and crying. Many of them were straight defiant with their parents and horrible to the hospital staff. A child life specialist noticed my total disgust with the situation and pulled me aside immediately. She told me that as hard as it is, we must treat Isabella as if she doesn’t have cancer; don’t give her a privileged life because she was sick. Discipline is important in these situations and if we let her get away with things now, we have a large battle ahead. Raise her as if she is going to survive because if she does, you will have to deal with the consequences of what you raised during this time period.

Stuart and I took that advice to heart. While we were definitely empathetic to her situation, especially during the hard times, we made sure to treat her as if she were just a normal child. She was going to do what we told her to do or there would be consequences. There was no disrespect or bending of the rules. This was how we would raise all of our kids and she was no different.

Why did I fight her on walking? I’m sure people thought at times that I was hard on her. I carried her as much as I could but sometimes I made her walk. Sometimes I made her pull her own luggage in New York because I was pulling all of mine, a stroller, and sometimes her brother Grant. I hate how often I made her walk. I felt like I was always walking a couple of steps in front of her. She was so slow and we were always rushed. I kept telling myself that walking is good for her. She is in a bed for so many hours during the day. Even though it was hard for her, she was building strength in her legs and it was good for her. But why didn’t I walk alongside her? Why did I make her look at the back of me?


I remember so many times walking in front of her as she cried going into preschool. I would be carrying Grant and just needed her to walk. She could walk, but I also could have picked her up and carried them both. I feel like in some sick way I was punishing her for giving me this shitty life. I don’t even know if that’s true as I write it. I just can’t figure out why I did it, even now. Everyone else would just pick her up. But I wanted her to be strong and in some way show me that she wasn’t going to let this disease beat her every day. She was 4. What was I thinking?

Why did I fight her on her clothing choices? She had this horrible sense of style that used to drive me crazy. I kept thinking, you already have a bald head – do we need to stick out even more than that by wearing mismatched knee-high socks and tennis shoes? But she wanted to and we fought every day about it. I would take her shopping and buy her things she said she would wear, only to come home and have her tell me that it’s uncomfortable and refuse to wear it. We would battle daily on clothing.

Why did I fight her on food? She would tell me what she wanted to eat, I would get it for her and then she wouldn’t eat it. Everyone else would just keep fixing her new things until they found something she would eat. People would drive 30 minutes to get her crab legs in the hospital because she might take a few bites of them. I was tired. I couldn’t play this game with her because I was over it. So in return she would refuse to eat. But now I would drive 8 hours to get her those stinking crab legs.

I have to think that both of us were looking for some kind of control in a world where we had no control. Maybe we were both punishing each other for something that neither one of us was to blame for in the end. I just wish that I hadn’t fought her on so much. In the grand scheme of things, none of it mattered. Who cares if she wanted to wear PJs to school really? It bothered no one in the world but me. I start to think if there were time periods when she and I just really didn’t even like each other, which is horrible. We were both just living in this weird hell together and taking it out on each other.

Maybe we weren’t friends. I think as a parent I have to be okay with that. That is who everyone else got to be to her. My job was to do everything I could to keep her safe and keep her alive. I think she knows that role was more important to me. When she was in pain, she wanted me because she knew I was going to do everything in my power to make the pain go away. I think that is why the dying process was so monumental between the two of us. At times I felt like it was just her and I going through her death together. We had finally come to terms with what our relationship was and there was no one we would want beside us but each other. I feel like we spoke so much to each other during those last few days without saying a word. I think we finally got each other and realized there was no love stronger than the love between a Mother and Daughter. Sometimes they just have a funny way of showing it.

Isabella’s mommy



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Why You Should Run…

Day 15 quoteDay 15

Why you should run…

Run is a scary word, let’s stop saying run… let’s say participate. For those of you who have attended our race in the past, you know that it’s not really a run. Sure, we get some of those serious runners who are going to blow right by you while you are walking and catching up with friends. But, the majority of you come out with your family, walk (or run) the 5K, cheer on your kids during the 1-mile fun run and bid on our auction. The day is about the cause and maybe not so much about the calorie burn. So for those of you who have never attended the race, on Day 15 of my “Why” series, I’m giving you the top 15 reasons why YOU should run.

1. The cause. Come one. There isn’t a better one out there. Our mission is to give as much away as we can to Neuroblastoma research and that’s why we are here. Also, a small percentage of your donation will also be supporting the local Make a Wish chapter and the Ronald McDonald House of Charlotte. Lots of great things happening here.
2. It’s a family event. Kids LOVE our event. We focus the event around the family so there is something for everyone. The kids are so proud of themselves for participating and have a blast in our kid’s zone after the race. Every single kid that participates will get a medal that they can wear that shows everyone that they are making a difference.
3. The silent auction and raffle. Our auction director and her team KILLED it again this year. Everything from trips to Aruba, dinner with Coach Rivera and his wife, Tory Burch bags, Panthers tickets, Charleston trips… you name it. We will have over 150 silent auction items and 50 raffle items. All bidding can be done online and you will not believe what all we have.
4. The 10K run. For those of you who are serious runners, we offer a 10K to really get those calories burning. The 10K event is growing like crazy so expect a big crowd this year!
5. Stock up on all our new ISF gear. I’m a stickler on cool stuff for ISF. No cheap Hanes T-shirts here. Everything we slap ISF on is cool, soft, comfortable, and affordable and of course the money goes to the cause. Want a wine bag with ISF on it? How about a purple ISF selfie-stick? Yep, we got all that.
6. The ISF team. You know them, you love them. These people work all year to bring you the best event we can. They are dedicated to Isabella’s legacy and making a difference and we wouldn’t be here today without them. Be sure to stop any of our team and let them know what you like about the event and how we can make it even better. Also tell them how awesome they are.
7. Support the Isabella’s Dream Team. Over 70 people have signed up to this team and they are all training for a half or full marathon by raising money for ISF. They are working so hard and get up early day after day to train for the event in November. This is one of their training runs so cheer them on as they run the 10k this year!
8. Grant and Sophia. These kids count the minutes until this run. They are so proud to be Isabella’s brother and sister and love that this day is all about her. They freak out when they see everyone wearing their Isabella shirts that day and will be thanking and hugging all of you. This day falls right underneath Christmas morning for them so you will see two very excited children.
9. All your favorite Charlotte media personalities. Molly Grantham will be at a tent doing awesome things to raise awareness and our favorite Radio personalities; Woody and Wilcox will be MC’ing this event. I’m always nervous to see what Woody will be wearing so you may want to cover your eyes. So many of the cool people you know and love in Charlotte will be there so be on the lookout!
10. You LOVE purple. Every year we really go all out with the purple so buy those purple socks and wigs, paint those nails purple, wear those purple beads. Today is the day where there are no rules for fashion.
11. Chick Fila. Do I need to elaborate here? Probably not.
12. Support all the businesses that support us! There are so many amazing local businesses that are behind us this year. They will all be there so be sure to stop by and get to know the local businesses in your area that are behind this cause. MetLIfe and Burns Cadillac are our presenting sponsors this year and we LOVE them.
13. It’s not just a race. This is not the traditional 5K that you cross the finish line, grab your banana and head to your car. There is so much to do after the race that you won’t want to leave. Music, food, entertainment and more.
14. Phantom runner options. Can’t make the race for some reason? We know we have lots of supporters outside of Charlotte so each year we offer a Phantom Runner option so that you can support us from wherever you are! We even sent you the race shirt! You can proudly sport our shirt and bid on our auction from Florida if you want! We ship everything to you!
15. To be inspired. I can’t tell you how many people come up to me at the race and tell me it’s their first race and they can’t believe how amazing it is. Once you come one time, you come every year. People are energized and excited about what we are doing and it changes them. You’ll understand what I mean once you experience it first hand. Trust me.

This year we are tracking race participation to be up almost 50%. What that means is that it will be our biggest race ever with close to 3000 participants on race day. Online registration is open through mid-next week so be sure to register ahead of time. Race day registration can be backed up so relax knowing that you are ready to go that morning and register in advance.

The race is less than two weeks away. We are ready. Are you?

-Isabella’s mommy


Group dream team