Today’s post is a topic that tears at my heart, and stirs up emotions I try very hard to block. As a parent, it’s easy to be consumed by all what ifs. What if my kid gets sick? What if we get in a car accident? What if…What if…What if…? Those what ifs pile up until they become suffocating. With time, I’ve become adept at blocking out the what ifs and the fear that accompanies them. It’s not the healthiest way of dealing with fear, I know. But today I want to introduce you to my friend Julie, and her daughter Olivia. Julie and Olivia are living the what ifs and doing so with astonishing strength, grace and compassion.
I’ve known Julie for years. Decades. We grew up in the same town. Julie was friends with my sister. I wish I had been more mature back then to realize that my sister and I could share friends. Julie is one of a kind and I truly feel like I missed out all those years ago. Julie is wise, caring and well-spoken; and she’s been through some unspeakably hard experiences. I wish I’d been a better friend to her through it all.
I reconnected with Julie on social media a few years ago. I found her blog, where I learned that Olivia had been diagnosed with a very rare chromosomal disorder called 13q deletion. Because of the 13q deletion, Olivia is more susceptible to certain types of cancer. In 2011, Olivia battled retinoblastoma and had one of her eyes removed. I’ve read and re-read Julie’s blog. I’ve cried and cheered for Julie and Olivia from a distance. I’ve liked her posts on Facebook and left comments on instagram, but I felt helpless and wished I could really help. And then earlier this year, Julie mentioned a project she was working on called The Monster Project (which is in conjunction with Kendra Webster’s Legging Project), and I knew it was time to reach out for real. I emailed Julie and asked her if I could interview her about Olivia and the project. Julie agreed, and I’m so happy to introduce you to Julie and Olivia today.
Tell us about you and your family.
My husband, Brandon, and I have been married for 7 and a half years. We moved to Tri-Cities, Washington shortly after Olivia was born in December of 2009. We own a delivery company here that Brandon and I run together while he is finishing his degree. We had a son, Cole, in March 2013 after all the dust had settled after Olivia got cancer. Between jobs, school, church and family we are so busy it’s sometimes hard to catch my breath, a feeling I’m pretty sure most women can relate to.
How’s Olivia doing now? How are YOU doing?
Right now Olivia is good. Health-wise she is in maintenance mode. We make regular trips to Seattle (about every 1-2 months) for various appointments and procedures. She is still followed closely by her cancer team and was declared officially cancer free about a year ago. She gets regular Botox injections into her vocal cords to help keep her off oxygen. Once she reaches her pre-teen years she will be closely monitored for bone and soft tissue cancers, something I am trying hard not to dwell on. But for now, we are in a routine, we know what to expect and I’m ok with it. There are always little random things that pop up here and there–a lump on her collar bone, irregular heartbeat, things like that—that set me on edge, but she has a fantastic team of doctors the keep her health and keep me sane. There are also fine motor, speech, sensory and cognitive issues that are always being addressed. It seems like something new all the time. But we are learning and figuring it out as we go.
As for me? Well, I’m good mostly. Having a child who has such an uncertain future changes you. I am told often to not dwell on what will likely happen to her, on all of the uncertainty, to just live in the moment. It’s good advice, and I try but I feel like I will always live with this quiet fear, the constant feeling of waiting for the other shoe to drop. Because the truth is, it IS going to at some point and there is nothing I can do to stop it. Cancer will come back. She will always be challenged in ways her friends are not. And even though I do everything I can as her mom to keep her health, to keep her happy, to teach her to be strong, that fact scares me and breaks my heart. I’m doing my best to not let it dominate my thoughts every day. But sometimes that quiet fear is a loud roar, and I have to let it run its course for that moment or that day so that tomorrow I don’t have to think about it as much.
Does Olivia like being a big sister? What does she like to do for fun? What’s her favorite color?
Olivia loves being a sister…or rather, she loves bossing someone around. She likes to “mother” Cole and he seems pretty amused by it most of the time. She is loving babies right now, but he’s getting almost as big as she is, so he may not fill the baby role too much longer. Olivia has hypotonia (low muscle tone) so I enrolled her in ballet this fall to help her with strength and coordination and she is in LOVE. We get there early and stay a little late so she can watch the older girls and she tells me after every class that it was “magical.” She also loves anything red, pink, princess, or puppy related. She loves to sing and performs for me daily. I love it. She is 100% girly and pure sunshine.
How do other people treat Olivia? Do they ask questions? What advice can you give to people about how they treat people who are different than they are?
I’ve been dreading the school years since we first found out about Olivia’s chromosome disorder. At a first glance, you don’t notice anything different about Olivia. She is beautiful, charismatic, and charming. But the more you are around her, the more you notice things that are a bit “off.” It might be that at her age she can’t do things as well as other kids her age. She doesn’t run like them, doesn’t quite have the same fine motor abilities, she struggles to get her words out and they often come out in a jumble. Those are all things we are working on daily, and so far they aren’t things that she’s got a lot of negative attention for, just the occasional comments from kids. Her eye is more obvious, as far as differences go. Last year in preschool she came home one day to tell me her eye was “creepy.” I asked where she had heard that and she told me a kid at school. The “creepy” was lost on her, thankfully, but I had never felt such a heartbreak. I told myself they were just preschoolers, but honestly, that doesn’t really make it less hurtful. Logical? Not really, but it’s true. There have been a handful of incidents where kids have told her they didn’t want to play with her because she had a “weird eye” or other similar comments have been made about her eye. It isn’t always by strangers or people we’ve just met either. Most of these comments have, so far, gone over her head but not all of them. And what doesn’t bother her, REALLY gets to me. Things like that happen and it takes everything in me not to scoop her up, lock ourselves in our house, and never have to deal with anyone ever again. But I know that being overly protective won’t do her any favors either.
I have worked really hard to help her be comfortable with her differences, I try to expose her to different things, different experiences. She’s in ballet, we do a lot of activites around town, we meet new people (mostly because Olivia is so chatty). A good friend of mine worked at our local ARC (an organization for people with physical and intellectual disabilities) and we go to different activities they hold during the year. I want her to know what Autism and Down Syndrome are, I want her to be able to approach people in wheelchairs, who have a deformed limb, or other physical disability without any fear. I want her to know that some people’s brains work a little differently than hers, and that it is all ok. I want her to learn acceptance and kindness, to know we all have things that make us different, including her. I want her to be able to ask questions about these things so she can understand them, because if there’s one thing I’ve learned its that kids are afraid of what they don’t understand. When we go to Olivia’s ocularist (the one who makes her prosthetic eye), I have her look at herself in the mirror when it’s out, we take pictures, and we talk about it. I do that so she understands it, so that when the time comes that she is asked about her eye and I’m not there to help answer, she can do so with confidence and not be completely thrown by what is being asked. We talk and talk and talk. And I hope that it pays off.
I know that it isn’t always just kids that have questions either. Parents have them, too. And if there’s one thing I can say that helps its that it is 100% ok to ask questions. Talking to other parents of kids with disabilities that is something that has come up more than a few times. If someone comes up to me and asks, “Do you mind if I ask about her eye?” I am more than ok telling them. It’s when people skirt around it or shush their child that is asking about it that it starts to sting. If your child has a question, let them ask or ask for them. I believe they are just curious and want to understand, and shushing them (even if its because you are embarrassed) makes them feel like what they are asking about is something to be afraid of. And honestly, sometimes it’s easier when you DO ask questions. For instance, just a couple of days ago at Olivia’s ballet school, I was sitting in a long hallway with about 20 other parents waiting for our kids. The door to Olivia’s studio opened and she burst out yelling, “Mom! I think my eye is upside down!” I felt every head turn and every pair of eyes turn to look at us, because, well…that’s kind of an odd thing to come out of a 5-year-old’s mouth. I looked, and sure enough her eye was upside down (it happens and is uncomfortable for her) so I had to use my fingers to twist her eye back into position. Again, that had to look so weird. She went back into class, and I could feel red heat creeping up my neck and to my face. A few stares lingered and the mother of two girls next to me kept trying to quiet them as they kept asking what I just did, what happened to that eye, what did she mean? I didn’t volunteer any information, since just blurting out seemed like a strange thing to do, so I turned back to the book I was reading until class was over. The whole thing wasn’t particularly upsetting, it was just very awkward. But had a parent asked me, I would have gladly explained. I would have been relieved to explain instead of sitting there ignoring the lingering stares. Even though I am open about our story, I don’t always know how to talk about it, even in a situation like that.
So please, let’s all teach our kids to be kind, to understand that differences and disabilities don’t have to be something to be afraid of. Let’s teach them compassion. Because we all have things that make us different. We ALL do. And that’s ok. Teach your kids acceptance, show them you are ok with differences and THEY will be, too.
How did you become involved with the Leggings Project, and what led you to start The Monster Project? How can we get involved?
My sister-in-law introduced me to Kendra Webster a year and a half ago and we became fast friends. We had a lot in common and have been through similar things in our lives, friendship with her just clicked. Kendra’s daughter, Makenzie, died from SMARD when she was a baby and she started the Leggings Project in honor of Makenzie. She has donated nearly 5,000 to Primary Children’s Hospital. She asked me if I would be interested in helping her by adding something in honor of Olivia. We came up with the idea of one-eyed monsters and started working on them earlier this year in addition to the leggings. In June we made the first half of donations of leggings and monsters to Seattle Children’s Hospital and the remainder of the year’s donations will go to Primary Children’s Hospital.
I have loved doing this and plan to continue it as long as I can. It’s a good creative outlet and it gets you out of your own head and doing something good for someone else. People can make or donate these items or donate money through either my blog or Kendra’s. A little bit goes a long way. These items provide a little bit of comfort to sick kids, even if just for a moment. I know for us, whenever we are in the hospital things like this are so uplifting not just for the child, but for the parents. It makes you feel a little less alone and reminds you that someone has been where you are and that there are other people out there cheering for you and your child, praying that you both make it through whatever it is that is happening. Every pair of leggings and every monster was made and/or donated by someone who knows Olivia’s and Makenzie’s stories and the hope is that that same love extends to other sick children and their families.
Julie, thank you for your honesty and realness; for your sincerity and strength. And thank you for sharing Olivia with us. She really is a ray of sunshine, and we’re all so lucky to “meet” her. I hope we can all try a little harder to be kind and compassionate, because we all have something that makes us different.
And for everyone who wants to make monsters…let’s get to work! I’m sharing my Sock Monster Tutorial over on Honest to Nod today, and I’ll have it over here tomorrow. Also be sure to check out Kendra’s blog and Legging Project and Julie’s blog and Monster Project. It’s a great way to teach our kids to help other kids.