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Finding The Courage To Reach Out

By NICOLE STUSICK

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A few months ago, I decided to take Theo to a nature museum for the 2pm butterfly release. We hustled over there, checked in, and even had a few minutes to spare (which never happens!) We reached the butterfly room only to see, in big, black letters on a large sign: NO STROLLERS IN BUTTERFLY ROOM. My heart sank, and my mind reeled, “I guess I could take him out and hold him…” There was a section where everyone was parking their strollers. My mind continued, “…but, he is just so heavy to hold and what if there’s nowhere to sit?…” As I was in the middle of my internal conversation, a staff person heading towards the butterfly room door walked by and following her was a woman with a volunteer vest who happened to use a wheelchair. I quickly calculated that maybe there was accessibility for us too. I took a deep breath and asked, “Is there any way my son could come in, in his stroller? He is special needs and this stroller is like his wheelchair?”  Without missing a beat the staff person smiled and said, “Of course, why don’t you head in with us and just park in the back?” I took a big exhale and we rolled in and I could see why there was fuss about strollers- it was a bit tight. But, we parked in the back and I got him set up to see the release. Within seconds a different staff person marched over and directly told me, “There are no strollers allowed in this room.” I clarified that the other staff person told me it was okay, since he was special needs. He nodded and looked a little confused but walked away. I took another deep breath. I felt mostly comfortable, but as more families started to come in I felt a little “scarlet-lettery.” They’d look at us and at our stroller and it was quite clear on their faces that we “were not following the rules.” I mean, for some I am sure it was just a meaningless glance, but my hyper-awareness about my seeming rule-breaking kept my head on a swivel. I should add in that my son’s disability is not entirely obvious when he is sitting in his stroller. He’s only two and although he cannot sit on his own, it is hard to tell the extent of his disability with just a glance.

I could feel the one-liner load-up in my mind in case I needed to use it. I’d say, “He is special needs and this is used as his wheel chair.” No one said anything, but I definitely felt looks. I can’t say this with certainty, but I can say it with some probability that the volunteer in the wheelchair did not share the same looks we did. This isn’t a competition between people with mobility concerns, but it does give a small glimpse into the internal monologue of families just trying to go out in the world and knowing that they might have to “change the rules” for kids with disabilities or developmental differences. The rule change is not because they are being selfish or inconsiderate; I’m sure none of them, like me, want that extra attention. It also gives a glimpse into what perceived disability looks like. I’ve written before about our evolution to accept and understand the necessity of equipment for Theo. That night I went home and made a little sign to put on his stroller that said, “This stroller is used as a wheelchair for a child with a disability. Superheroes use cool wheels!”

Was the sign for me? A little bit, to give me peace of mind, but it was really to help advocate for Theo to belong and even though he is 100% oblivious to any attention that may be negative, it felt like the best decision for him and me. I’ve found that the more open I am about our story, the more I make his needs aware, the more understanding people are, because they now see Theo for who he is. It is definitely exhausting, but most of the time it allows him the support and acceptance he deserves. Until the world gets there, I’ll make sure the world gets it. It’s all a balancing act.

All of that happened, but what defined our day and our visit to the butterflies was much more beautiful.

Theo ended up being able to see a little of the butterflies and it seemed like a success. No tears, no meltdowns, no inconsolable screaming. (He’s a little man with opinions.) Before we left, I took him out of his stroller and I was walking around with him in my arms for a few minutes. I saw a mom come in with a stroller. She had a toddler walking beside her and a baby in his car seat on the stroller. Immediately the same staff person who had confronted me went directly over to her, I’m assuming about the stroller. I didn’t hear the conversation, but I saw her point to my stroller and then the staff person sort of tilt his head and whisper what I can only imagine was something like, “That’s for a special needs kid.” I could see in her face a look of miscalculation, a look I have come to recognize when people receive new information challenging what they assumed. She just assumed someone else had just brought in a stroller and that was that. In a funny way I felt validated and in another way I felt exposed. I wanted to both ask her to spread the word to the other families eyeing our stroller and I also just wanted a stroller not to be our defining characteristic of our day.

A moment later the woman came over, she tapped me on the shoulder, she had tears in her eyes and said, “Can I just give you a hug? You’re so amazing.” I immediately started crying. I said, “Of course, that’s so nice!” She apologized saying that she was still hormonal after birth and she didn’t know if it was weird. I told her it was easily the nicest thing any stranger has ever done and that it felt so supportive. We walked around together. She later texted again, “I’m just glad I didn’t scare you off. I stood there second guessing myself back and forth – and finally got the courage to go up to you.”

I still tear up as I think about her kindness. She had no way of knowing my stress with the stroller or the stares from on-lookers. She had no way of knowing the extent of Theo’s health concerns or that every time we go somewhere we don’t know if he will just cry the whole time, she had no way of knowing any of that- but we felt every ounce of her empathy. She “stood there second guessing…and finally got the courage to go up.” There is obviously a direct impact on how this type of kindness benefits families like ours in the community of disability. All we hope for is that our kids are included and instead of people being afraid, they lean in and ask questions. But, I also see how her example of courage reaches much larger. I see it as a reminder to all of us in situations where we aren’t sure how they will go to choose being a little uncomfortable knowing that your discomfort might just give someone the gift of comfort and acceptance. I know for me on that day it rewrote the whole story from one of feeling like an outsider to one of feeling seen and understood. We owe that to Karla’s kindness and vulnerability and we will always be thankful.

NICOLE STUSICK

Nikki is mom to Theo, the inspiration and fuel behind her writing and advocacy. Theo is her warrior battling the rare genetic disease TBCK, a neurological condition which causes epilepsy with intellectual and developmental disability. Nikki chronicles her journey  through her blog on Instagram, Theos_Village, and is the founder of Theo’s Village: The TBCK Foundation, with the mission to improve lives impacted by TBCK through research and advocacy. Nikki is a believer in the power of storytelling and is passionate about bringing together families who are raising children with disability and medical complexity.

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