10 Years in 10 Minutes
10 years in 10 minutes. A glimpse of Isabella’s sweet soul, the legacy her parents fight to build to save children like her, and what the Isabella Santos Foundation is doing today in her honor to help kids with cancer.
11 things raising a terminally-ill child taught me about parenting
Written by Erin Santos, Originally published on village (2013)
When someone tells you that your child will not survive a terminal disease, you quickly begin to look at raising her in a whole new way. I lost my 7-year-old daughter Isabella to the rare pediatric cancer neuroblastoma in 2012. Here’s what I learned from raising my terminally-ill child—and how it’s helping me parent Isabella’s two younger siblings.
1. Be in the picture.When you know have a limited amount of time with your child, capturing moments is critical and you make sure that you’re not the only one snapping photos. The years go by quickly for healthy kids, too—don’t spend them hiding behind the camera.
2. Just let it go.So she wants to wear her best party dress to school or even dye her hair red. When your child is sick, these types of battles often don’t phase you. Yes, you need rules and expectation for your child, but some of these less important things can roll off your back if you’ll let them.
3. Doctors don’t know everything. We put a lot of faith in the medical community to have all the answers. And doctors are forever cautioning parents to avoid doing their own research on the internet—but you can and you should. You are smart enough to sift through what’s reliable and what’s not to get more information and possibly even find a new treatment or trial that might help. Trust that you are the best advocate for your child.
4.You can’t do it without help. Raising a terminally ill child is a full-time job, and the only way you get through it is allowing people to help you—whether it’s picking up groceries, mowing your lawn or ferrying your other kids from school. But all parents need a hand—don’t wait until you’re in a crisis to accept it.
5. Death is real and final. When you know your child is going to die, you really think you know what that means. But even as you’re going through the last stages of death, it’s hard to really grasp what’s going on. Losing your child forces you to face the issue. Everyone has to deal with death at some point—it’s important to find ways for your family to talk about it.
6. You can have more good times than bad. At times it can be hard to carry on when you know how the story ends. But with some effort, you can create amazing memories so that you laugh more than you cry. Take your kids to Disney World, have cake for lunch, play hooky from school to get a manicure. It doesn’t have to be all bad all the time—you can tip the scale in the right direction.
7. You’re stronger than you know. When your child is sick, you’ll do whatever it takes to help—changing wound dressings or organizing fundraisers to raise awareness for your cause. You tap unknown resources of strength and courage. Whatever obstacles you or your child face, don’t let anyone push you around.
8. Everyone has an opinion. If you chose to share your story with the community, your life will be under a microscope. People will question every step you take, every trial you enroll in and have no problem telling you what they think. “Have you looked into this hospital or this drug?” Everyone will always have an opinion on the choices you make and you quickly learn to ignore anything that’s just not helpful.
9. Take advantage of quality time. When you spend hours upon hours of hospital time in treatment rooms, overnight stays, emergency rooms and waiting rooms, you eventually learn to put down your phone or computer to try to be in the moment as much as you can. Time together with your kids can be meaningful and beautiful if you give it the attention it deserves.
10. You’ll be jealous of others. There are days when it’s impossible to watch families with healthy kids. Listening to a friend complain about their child’s ear infection will drive you mad. But jealously affects everyone and it’s important to try to move past it—or at least learn to live with it.
11. You WILL have regrets. No matter how hard you work, what drugs you try or where you take your child for treatment, things will eventually catch up to you. You will beat yourself up on which fork in the road you took that caused the ending, but in fact their time just ran out. Whatever difficult situation your child faces, try to limit your regrets and be confident in the decisions you make. You’ve done the best for your child that you can.
Erin Santos is a freelance writer, blogger and president of the Isabella Santos Foundation (ISF), a nonprofit organization dedicated to raising funds for neuroblastoma and other pediatric cancers. Erin and her husband founded ISF when their two-year-old daughter, Isabella, was diagnosed with neuroblastoma. Though Isabella passed away in 2012, the foundation continues its mission in hopes of saving other children. Follow ISF on Twitter and Facebook.
A version of this story originally appeared on iVillage.
Falling On Deaf Ears… the Consequence of Silence.
By: Erin Santos (Isabella’s mommy)
I’ve written some things in the past that have made a difference or gotten someone up out of the chair. For the first time this year I thought, I’m not going to write something because people finally get it. I’ve written about how “awareness” is a bullshit word and how instead we should take action. I’ve written about what all cancer steals from a family when someone dies. And last year I wrote 30 days of “whys”. Why people get divorced, why I stopped visiting her, why we cremated her and more. I have poured my heart out year after year, picking my scab and pulling back the curtain on what cancer, loss, and heartache is really like. So I figure you get it now.
Each year the foundation grows more and more. We see more dedicated people coming to support the cause who never even knew Isabella. People would tell me what we are doing here is phenomenal. Most non-profit’s had a run rate between 8-10 years before they close their doors. They slowly lose their supporters. But we were different somehow. We had some secret sauce to what we were doing that meant we were going to survive the charity down turn. Even more amazing is that we were doing this all without Isabella standing on stage or asking people in Target to come to her race. Maybe we were going to be the charity that survived the industry down turn because our supporters were lifelong supporters.
I have to say, today I’m scared.
When you are riding on the wings of a ghost year after year, you begin to have moments where you think your message is falling on deaf ears. In years past, it seemed easier for me to rally the troops. But this year I feel like something changed. I sit back and watch social media and see these people on the Dream Team posting pages after they have gotten up on a Saturday morning while everyone in the world is snug in their bed. I see them fighting mentally to run in the heat and humidity, up hills – putting in mileage they never dreamed they could accomplish. Only to finish with their body’s aching, limping to their cars. They go home and push out their proud morning to their supporters and often times get no donations to support them. We have runners that show up every morning, to save kids they don’t even know – someone else’s kids – and have trouble receiving $500 in donations over a period of 6 months of training. How is that possible? I worry I have somehow let these people down by not providing them with a child they can fight for. Am I not supplying content that is meaningful that will make their supporters understand how important this is?
I watch us work all year towards a race that is dragging in numbers. I have to tell myself that people always sign up late, but we all watch as excuses come in about why someone can’t attend. Soccer games, vacations, family in town, and a party the night before (possible hangover)… the list goes on and on. It’s so hard for me to hear the excuses when I watch my team work tirelessly to make the day so amazing for everyone. I want the entire city to show up and appreciate all they have done.
I think it’s hard because I watched Isabella walk Time Warner Cable arena, on a beautiful day when all her friends were playing, to collect money for the Ronald McDonald House, or bake cookies for families or give her toys away. No matter what she had going on – she knew what was important and made the time for it. Stuart always said that by watching Isabella, you always realize the things you really thought were important – really aren’t. She always got it. I love those that get it. I love seeing people that have been there year over year – no matter what their Saturday looks like. I love when I see people at the race who come with their company that is in for the weekend. I love people like the Gold family who are currently fighting neuroblastoma themselves, who can’t come to the race because they are taking their family to Disney. (Talk about a good excuse!) Instead they created a team and are constantly recruiting people to come to the race under their team name. They created a FirstGiving page and have raised over $3,000. Just today their family was here picking up our ISF tent to hold a lemonade stand on a Saturday night to raise money for a cure that might help their own daughter. They get it.
I wish I knew how to motivate others into action like I once did so easily. I wish the Dream Team was being rewarded for the 8 miles they ran for other people’s children this morning, and again and again when they ask for your support. I hope my ISF team feels a huge sense of accomplishment when they see the waves of purple 2 weeks from today. I hope everyone who supports ISF feels proud when we are able to send funds to advance treatment is Isabella’s name. I wish Isabella were here so you all had someone to save who you could see that morning. But she isn’t here because for years, these pleas have fallen on deaf ears and her death was the consequence of silence.
My hope is that instead of liking a page, sharing a post or being aware of her passing – you make the change to do something about it. These kids all need us to change from awareness to action. The clock is ticking.
Sign up for the race. Be a Phantom Runner. Create a Team. Create a FirstGiving Page. Support a FirstGiving Page. Just do something.
