Hi. My name is Erin and I have lost a child. This is the phrase I feel I need to say when meeting new people. You know the story. Family has a child, child gets sick, child dies. But now I’m not sure what the story is anymore? The story of family who loses child, then tries to live the rest of their lives is a story that changes daily… even by the minute. We seem like a normal family most days. Even now we are sitting at a hotel pool in Florida with a bunch of “normal families”. No one here knows our tragedy and sometimes that is nice. I get to sit and read my Kindle and watch the kids swim. Floating all around the pool are dragonflies…the thing that reminds me most of her. But it gets to be a private thought for me and I like that. All of a sudden I look up and see my kids talking with a group of Grandmas in the pool. My kids don’t know a stranger so this is nothing new to me. After a minute I zone in on the conversation and realize that my son is telling them all about his sister Isabella who will be nine in two weeks. But she is heaven… she just died of cancer. I immediately spring to my feet and call out to them to come back and play closer to me… “Stop bothering the nice ladies”, I say with a smile. But the Grandma’s instead hold up their hand as if to say, “STOP! SIT DOWN”. They are intrigued by the conversation and want it to continue. And there is it… our gruesome private life thrown all about pool 1200 miles away from Charlotte. Typical.
This happens often for us because we talk about her so much. My kids don’t think it’s weird to bring her up to strangers and tell them all they know about cancer and what it did to their lives. I guess I prefer this to it being a secret. It would make it seem like we want to forget her if she weren’t discussed frequently, so these divulging secrets to strangers at a pool will always be a part of our lives.
At home the dust has settled. Most people know our story and our lives get to be pretty normal most of the time. We don’t get the question too often about how many kids we have so that’s a plus. (I hate that question.) No one handles us any longer in white gloves with tender hugs and tears when they see us. It’s only certain times of the year when people put their white gloves on. I dread those days. Christmas is always a big one and the of course the day she died.
There are so many times of year that people don’t think of but are big ones for us. The entire month of August makes me want to vomit. It was the month she always seemed to relapse with cancer. She seemed to always miss the first day of school because she was at the hospital throwing up in a bucket. While most people are smelling pencils and erasers, I always smell relapse. I like that no one knows this time of year is hard for me. Every day I feel sick and if I retreat people just think it’s the hustle and bustle of back to school. I get to live my own private sickness of emotions and depression. I just wish so badly she was getting on the bus with everyone else.
Another public day is just around the corner… her birthday. I am still trying to navigate these public days. People who are in my every day in my life tend to take a step back to give me room on these days. The ones I never hear from come crawling out from behind the months of silence. It’s a lot of white gloves and tender hugs and tears through social media and texting. How personal, right? Thanks, 2014.
Her first missed birthday was an ultimate fail. I tried to be public at a blood drive and do the kissing babies and shaking hands. I was dying inside and just wanted to hide in her bedroom with a bottle of wine (or three) and cry my eyes out. I found that being in public with a big birthday cake as we all sang Happy Birthday was my worst nightmare. Mental note… NEVER sing happy birthday to a lost child. It is a slap in the face and will send Mothers into a dark tunnel of depression that will take weeks to pull out of.
The alternative is to find something private that will allow you to remember her in your own quiet way. So that is what we are doing this year. Honestly, with less that two weeks until her birthday, I have no idea what we are doing on that day. I know I want to go to Pike’s nursery and buy something to put at her site that would have made her smile. A new wind chime or some dragonfly garden ornament that will make me happy when I visit her. It’s nothing she would want. She would want some big sleepover and a trip to the American Girl store. I’m sure she is thinking… Um, thanks for the wind chime Mom but my doll would like to get her ear pierced and a new ballet outfit. Typical Ib.
I know that she meant so much to so many people outside of my house. For that reason, I decided to have an Ib day at her favorite place in Charlotte, Small Hands Big Art. Because of the treatments, Isabella’s body was never strong enough to compete in play with other kids. We found this studio and it was a match made in heaven. She wasn’t coming home with Macaroni necklaces; she was coming home with ART. It was art that I wanted prints made of to give to everyone we knew. I never know how they were able to pull these masterpieces out of her. Maybe it was always in there but after hours on top of hours of crafting in hospital playrooms, I lost my interest in uncovering her talent. Jennifer and her staff at SHMA fostered this artist inside of her and gave me some of my most treasured memories of Isabella. They hang in our home as well as in the home of ISF supporters. These pieces of art drip with everything she embodied… love, brightness, family, animals, flowers, creativity, perfectionism, life, pride and most importantly they say nothing about death to me when I look at them. Just now I am sitting her and thinking, Small Hands. Big Art. That is exactly how I would define her time there.
I have been told she made a large impact on the ladies who work at SHBA. I loved this blog they wrote about her once. It captured it perfectly. When I mentioned the idea of having a birthday party for Isabella at their studio, they jumped all over it. It only seemed natural because we would probably be booking them for a party if she were still with us anyway. The wanted to volunteer their time and had ideas that would blow your mind. Our thought would be to have kids come and do art that centered around the “Girl on the World” ISF logo. How would they interpret her? These pieces of art would be donated to ISF to use at our events. What better use of the art, right? It makes me smile to think of future events with canvas paintings done by children of what Isabella left behind. Best part? The cost of the event will all in turn be donated to neuroblastoma research. Every single penny will be turned into a big check and sent up on behalf of Isabella. We hope the money will help another little girl get to that next birthday. I just love it.
I so badly want to stop by and check in but I’m going to play it by ear. I may be in pjs under the covers during this time of day. But I’m hoping that this year I have more strength than last year. All I can expect of myself is to get a little stronger each year. A combination of protecting my heart but celebrating my little girl is what I hope to accomplish each year. I’m looking for a little bit of public celebration, but a lot of private too. I can’t wait to see the art.
I hope that you will come out to Small Hands Big Art for a fun filled day for a great cause. Do it for Isabella, do it for another child with cancer, do it for me, or just do it to familiarize yourself with a children’s art studio that is one of the best kept secrets in Charlotte. Try them out on March 9th and then again for one of their regular classes. You’ll be amazed at what your little artist will bring home. It will for sure be something you will always treasure. I promise.
To register for Bella’s Birthday Bash:
Click here. This event is donation only. You child will have fun and create a unique canvas painting for ISF (inspired by their logo), & help carry on Isabella’s legacy and love of art! Your child’s art will lend a special touch to ISF’s future events. 1-2:30pm, or 3-4:30pm. Age 5-14, drop off. Minimum donation $45/child.