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Why I Fought Her

Screen Shot 2015-09-16 at 6.27.27 PMDay 16

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
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Group dream team

Why I Run

Day 14 QuoteDay 14
Why I Run…

Last month my marathon coach asked me why I’m running with the ISF Dream Team. I wanted to answer something easy like, “to stay in shape”, or “for the company during a run” or “all my friends are running”. But of course, my answers are never that simple.

Here is why I run…

I run to make her feel real.

It’s been 3 years. After a certain amount of time, it starts to feel like a dream. Some movie that you watched once but you were in it somehow. You had to of been in it because you are somehow in the pictures. I kick myself for taking the pictures and not being in more of them with her. Every once in awhile I catch a picture that someone took of me with her and I can barely breathe because I know THAT moment was real. The one that Angelo took of me with her in my kitchen. Those are real. That is a moment. She was dying and I knew it… but I still was just her Mommy in these pictures. But now, seeing her clothing in the house just feels like costumes from that movie. Even the pink dress I work to her funeral, I’ve tried to wear it on different occasions to get use out of it, but it is now just a costume too that can’t be worn in every day life. I don’t even dream of her. I wake pissed every morning when I have stupid dream about people I work with or some unknown face. Why can’t I see her even when I sleep? Is that too much to ask? I open my eyes each morning and look down the hallway, expecting to see her walking towards me holding her 10 blankies in her silkie pony pajamas. But, that too is just a scene from a movie in my mind. I live my life sometimes, forgetting what all happened in this house. Maybe I have to so that i can continue living because it’s a nightmare. But then I get upset with myself for wanting to forget. Some days I just want to feel her against me. But I know that is a dream that will never come true, so instead I search for ways to feel her again.. and this is why I run.

Things that make her feel real for me:
1. Visiting her site. Nothing brings it right in my face like putting my hand on that name plate.
2. Race day. When you see me, know that I’m probably drinking/drunk. I’m trying so hard to hold my composure knowing how she would of just loved being part of this day.
3. Running with the DreamTeam. Watching people get up at 6 in the morning and put on a shirt with your daughter’s name on it. Some of you knew her and some of you didn’t… and she is impacting your life. I know it sounds corny but I feel her running along side us every time we run. Laughing and singing and giving hugs to us all when we finish.

She won’t visit me in my dreams, so her gift to me is giving you all to me in another form of a dream. The Dream Team.

My goal is to raise $25,000 this year. If I hit that goal, I’m going to run back to back half marathons in November. 26.2 miles in 7 days. Help me hit my goal and give to the link below.

-Isabella’s mommy

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Erins Shoes

Why People Do Nothing

Day 13 QuoteDay 13
Why people do nothing…

I’ve been writing for 2 weeks and each night I’m blown away at the amount of people that are reading them and responding to them. I wake up each morning and before my eyes are barely open; I’m on my phone seeing if anyone made a donation and what our current number is for race registrations. Every once in awhile I will see a bump in things or a donation will come through my page. But it’s never what I think should be happening.

Childhood cancer can often be like a car crash. You drive by slowly and can’t take your eyes off of it. You read the blogs, you follow the children and then when you close your computer, you go back to your normal life. “Wow, that accident looks horrible, I hope no one was injured”, you say as you drive by slowly. Then once you pass it, you turn your radio back up and continue driving. How many of you would actually get out of the car and see if you can help. That’s what I’m asking you to do. Stop driving by it… get out and do something.

I’m sure I was the same way. When you aren’t affected by cancer personally, the only time you are faced with it is when it’s on the news or you receive your St. Jude’s return address labels in the mail. Occasionally you give the $25 and you use the stickers they send. Or you just look at the family and thank God it isn’t you.

Well it was me. It was us and it was her.

I had to put my child through unspeakable, painful treatments and in the end had to watch her die in my bedroom. I wasn’t able to just drive by like the rest of you and watch from a distance. I had to stare her in the face. Unfortunately, people don’t change until they are forced to. For us, the curtain was pulled back and we were exposed to a world of unbelievable sadness and despair. It changed us forever.

You hate to think that something like our situation has to happen to you in order for you to get up and move, but that is usually the case. Instead of waiting for it to hit close to home, I’m asking you all to do something to prevent it from happening to anyone else. It may not be your child that gets cancer, but someday your child could have a family and it could be your grandchild that suffers. Our goal with this Foundation is so when your grandchild receives that diagnosis, there is a cure and he or she will live.

You will thank us one day for saving someone you know. So ask yourself this question, what if it were your child? What would you do then? How would you respond? So today, do something… take action as if it were your child in the hospital, or your grandchild just received this diagnosis. Cancer doesn’t discriminate and no child is safe so it may be your own family your are eventually protecting.

Stop reading and watching the car crash… get out of your car and help these kids, because one day it could be yours.

-Isabella’s mommy

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Why New York Was Our Home…

Day 11 Quote

Day 11

Why New York was our home…

I have to be honest; the thought of treatment in New York was exciting to me initially. Not only were we going to get the best treatment available, but we were also going to have an amazing experience in the process. I had to been to New York a couple of times but the thought of going there with a child, let alone a sick child – had me a little nervous. Do they have car seats in cabs? Will I be able to get around the city with her? Will the germs and crowds of New York make things dangerous for her? And most importantly, what will Isabella think of New York?

It took some time to get settled. The hospital was huge and a little cold to outsiders. The families in the hospital ran in clicks based off backgrounds and religion. Even the Ronald McDonald House dining room was separated by groups of families that had history together. We were definitely outsiders in this city and we could feel it.

This separation within the world of cancer in New York didn’t stop us one bit. Because we were loners, we took it upon ourselves to take in everything we could in the city. Chemo was given in a backpack so she and I would strap in and explore the world around us. We would spend days as I pushed her in the stroller to Central Park, Grand Central Station, Times Square, Bloomingdales, the American Girl store, you name it. We weren’t afraid of anything. We rode the subways and she hailed cabs. We visited the Statue of Liberty, Rockefeller Center, Ground Zero and lit candles in St. Michaels Cathedral. If there was something to see, we saw it.

We met amazing people in New York and developed our own little New York posse. We had people to eat dinner with; people to grab coffee with and even people that would sit with Isabella if one of us needed a minute to ourselves. Isabella loved the people we met and considered them part of her family.

For three months during a brain relapse, we sublet an apartment on 86th street by Gracie Mansion and called New York our home. We were on one of the highest floors and had an amazing view of the city. I specifically remember being there one September 11th and seeing the lights of the twin tower shining up in the sky as Isabella and Grant pressed their noses against the glass in awe. We watched all the documentaries on the couch and everything had a different feel to it now that it happened in “our city”. We made sure to make our way down to Ground Zero that week and spoke about it best we could with Isabella. It was so hard for her to understand. But, it wasn’t the first or last time she was exposed to tragedy and adult situations.

New York was such an amazing city for us because it provided her with the memories that clouded the pain. Nothing we did mattered during the day as long as we could go the American Girl Store and buy a new outfit for her doll. We would try on shoes at Bloomingdales, grab bags of candy from Dylan’s Candy bar and eat at our little pizza place around the corner where they knew Isabella. After dinner we would take stroller rides around before bed and take in the city around us until she fell asleep. These walks would allow us, if even for a minute to forget was happened that day, or what was in store for us that next morning. We found so much comfort in our new home, despite what we were going through.

New York was a gift to us during all the horrible years of tragedy. It’s hard for us to go back because everywhere we turn is a memory of her. We want Grant and Sophia to experience it just as Isabella did and plan to bring them there over Christmas to see the Christmas tree in Rockefeller Center and see the Rockettes, just as we did with her. We want them to love the city and know that their sister grew up here, she was a New Yorker and we will always refer to it as one of our homes.

-Isabella’s mommy
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Ib In NYC