Recently, I was watching my now 2 year old Evie play with another little girl who is about 1 1/2 years old. While they were playing, I was looking at my girl with such admiration, so much joy, and so much love. I felt so proud of her and all she's accomplished in the last two years. I looked over to the mom of the other little girl, and realized that to her, Evie is that girl. Now, I am not meaning this as a negative towards this other mom or anything of the like, so just hear (read?) me out.
I watched her look at Evie with what I saw as the expression of "I'm so grateful that my daughter doesn't...". Doesn't have Down Syndrome, doesn't have developmental delays, isn't going to have to face the same kind of challenges that Evie has and will as she grows. This mama didn't have any meanness in her expression at all. She looked at my daughter with a sweet, soft smile, and looked back and forth between Evie and her daughter multiple times. Sure, there may have been some pity there, but I felt no ill will or negative energy from her. She was simply and probably profoundly grateful that her daughter does not have Trisomy21 or anything else like it.
This happened weeks ago and I've thought about it many times since then. A small part of me wanted to say things to defend Evie. What in the world could I possibly say to change that thought process? The answer is simple: nothing.
When I think about it, I've done the same thing. Truth be told, I'll do it again. Not to be rude, hurtful, or negative. Not to focus only on the disability or in any way deny the miracle and beauty of any other child or person. I will notice the challenges that others face and will find myself grateful that Ben doesn't have to go through that. I will be grateful that Evie doesn't have to experience those challenges. All the while recognizing that both of my kids have and will face their own challenges, and the child or person I'm looking at is beautiful, resilient, and worthy of the very best life has to offer them.
I have known since the day Evie was born that she would be noticed for having Down Syndrome. It used to terrify me that people would notice. I went through a brief phase of adding it to introductions, as if I needed to get out ahead of it. As if somehow that would make it less awkward and I'd feel less anxiety about my perfect daughter being judged as somehow less than.
Now, I focus on Evie. She is so much more than a diagnosis. Her personality shows more and more with each passing day. She still waves at everyone. She still makes people smile everywhere she goes. She loves music and dancing and boy, does she love the ocean. Seriously... I think she'd trade places with Ariel in a heartbeat, or hide in Moana's canoe with Hei Hei if given the chance. Evie LOVES the ocean. She loves water. She'll stand up on our paddleboard and dance to whatever song is playing. It's her happy place.
People will probably always notice Evie, at least initially, because of her Down Syndrome. Countless will look with pity and gratitude that their kids don't "have that." I hope that the lucky ones who get the opportunity to know her get to see what most won't immediately see. They'll see HER. They'll see her infectious smile, her killer dance moves, her love of music, her desire to play and find her way of doing everything. I can only imagine what else will develop in her personality-wise at this point... time will tell.
I know some will only see the diagnosis. Some will make judgments that are cruel or based out of fear or ignorance. When I write ignorance, I'm going by definition: lack of knowledge or information. What we don't know scares us. What we don't understand often drives fear. Fear often drives assumptions, judgements, and behaviors that many of us would prefer to think we wouldn't have.
I hope that the more people in the world talk about Down Syndrome, the more people normalize it, the more we're exposed to it, the less fearful it becomes. The less fearful it becomes to worry about having a child with a disability. So often as a therapist, I hear people talk about their fears of having kids. More often than not, having a child born with a disability is their BIGGEST fear. Down Syndrome is often specifically mentioned in those conversations.
As a therapist, I have to pay very close attention to my reactions and physical, mental, and emotional responses to what my clients share with me. I'm human and will feel things, and have to be mindful and intentional about what happens when I do. When these comments come up, it does create a response inside of me. Two actually. One part of me, the mama bear who wants to demonstrate how amazing my Evie is, and the human being and mother inside of me that understands the fears. I can't judge someone negatively for being afraid to have a child with Down Syndrome. I was afraid too! If I focus on addressing that specific issue, I'm missing my client's own issues and focusing on my own. I've been grateful for those perspectives, my efforts in healing, years of training, and lots and lots of practice. Because I'm not sure I'd be able to stop myself without all of that. Again, not to be angry at them. I don't feel anger when that comes up. I just want them, and people in general, to understand that Down Syndrome is not something to be feared.
Well... in many ways it is terrifying. There are so many unknowns. It's a wide spectrum with no demarcations or specific points of reference. Meaning you can't know what specifically someone with Down Syndrome will be challenged by. There are no "levels". It's hard to wrap your mind around that. There are no clear points of comparison that will give you a clear picture. As I type that... is there ever? With anything? Probably not. There is only "wait and see." Now, there can be clear medical issues, or delays measured against a typical kid the same age. All of that can be pretty terrifying.
What I know is this... without question... I see that extra chromosome as something I would NEVER change in my Evie. Medical science could fill the news tomorrow that they have found a way to alter the DNA and remove that extra chromosome in living humans with 100% success with no negative side effects (I know... that makes me chuckle too... just play along for a moment) and I wouldn't choose that for Evie. I wouldn't choose to change her to ease my own anxieties or to prevent people from making judgments, taking pity, or whatever. She is a whole, perfect, wonderful person as she is. She is worthy. She is capable. She is simply and powerfully Evie.
Evie doesn't need to change to ease anyone's feelings. Evie will expose people to a side of Down Syndrome that so many don't get to see. The human side. The truth about it. The person. She certainly did that for us. We know Evie. We see Evie. Before Evie, I never knew anyone with Down Syndrome. She's changed my understanding, my perspective. My whole world.
While there will always be people who are grateful their child doesn't have Down Syndrome, those who choose to get to know her or others like her will find themselves grateful to know someone who does. Those of us who get to know and love someone like Evie deeply, will forever be changed in the most incredible ways. In their hearts, she will be that girl that changed their perspective.
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