Everyone who knows us already is aware that Sarah is different. We are open about her condition when people ask, and it’s plain to see, because she looks different. It’s fairly easy to advocate and educate about Apert Syndrome, because it is visible and rare. Our family receives so much support from countless individuals and communities regarding Sarah’s needs and her impact on others. People rally with us and constantly inquire, “How is Sarah doing?”
All the while, Felicity looks on from the sidelines – fingers in her mouth, looking forlorn and clutching her security blanket, which is Purple Pillow Pet. It is easy for her to be overlooked, because she hides in the shadows and is self-conscious; she does not seek the attention of large crowds, while Sarah thrives on it.
But I see Felicity. I see the pain in her eyes, and it pierces my heart – the heart of a mother. She and I share so much, which is why I think our relationship is already occasionally tumultuous. We are both deep thinkers – prone to contemplation – fairly artistic in our shared love of visual, theatrical and musical arts, somewhat lacking in confidence, perfectionists, moody. We are both sensitive souls, and I see this gift in Felicity while most others just don’t seem to “get” her. It’s difficult for a lot of people to connect with Felicity; her personality is very eccentric, sometimes because of her sensory difficulties, but Sarah is very naturally joyful and outgoing. Lissie is more brooding.
At times I get incredibly frustrated with the fact that Felicity is simply not like most kids her age. I desperately want her to fit in, perhaps in an attempt to avoid the inevitable peer pressure and ostracizing that will occur as she gets older. I don’t want her to feel awkward, unloved and unnoticed in her youth like I did when I was in elementary school. I want her to feel comfortable being herself, even if it is vastly divergent from the populous.
So when I see her as I did today when I was driving past the school playground to pick her up after her morning preschool session had ended, my heart wrenched again. My thoughts returned to, “Why can’t she play with the other kids? Why can’t she just be like most kids her age?”
You see, I noticed she was the only preschooler who was not gleefully and capriciously gliding across monkey bars, swinging high in the air, sliding or interacting with other kids while running around. She was as she always is in a group – an observer, carefully taking note of the other kids but not engaging with them directly. At times she seems content this way, but today she appeared sad, and that made Mama sad, too.
When we came home, I did not verbalize my thoughts to her. But I did as I always do – internalized them. I felt guilty and racked my brain for any reason I may not be encouraging her enough or paying enough attention to her. Then, as usual, I felt overwhelmed. Sometimes I just want normal kids.
But then something happened that isn’t out of the ordinary, and yet it was reason enough for me to pause and consider how gifted my children are, especially Felicity. I was making a kale and quinoa salad with citrus dressing, and Felicity asked for fresh kale as a snack! Seriously, what 3-year-old does that?
And then she kept coming back for more – tomatoes, raw onions, fresh lemon and lime juice. She was delighted and savoring the culinary experience, and for a moment, I shared in her joy. I became a proud Mama – proud that my daughter prefers good, healthy, nutritious food to the junk that most of her peers would rather eat.
Later on, I quietly peered into the family room while I was elbow-deep making homemade salsa. I wanted to check on the girls, because they were entirely too quiet at the time. All mothers know that usually means mischief and mayhem! But I smiled to myself as I saw Felicity quietly, methodically – almost with a cadence or soothing rhythm – paste and place different colored straws that she had cut at school earlier in the morning. She has an artistic eye and a knack for detail – something else she and I share.
My darling Felicity also has a heart for music – or rather, a soul for music – in which she will actually request polka or ’80s music, oldies or classical violin. Again – what typical preschooler does this? And yet she listens not just with her ears or her senses, but with her entire being. I see it in her eyes – they sparkle and become vibrant, alive and alert when she is listening to music. We often sing together or speak about different instruments we hear or rhythms and beats in the background. She is acutely aware of different musical artists and is becoming acquainted with varying genres, as well.
Felicity does not prefer technology like most other post-millennial children do. Instead, she asks to go outside so that she can explore the world. We listen to the rustling of the leaves in the trees, watch the clouds go by on a lazy, sunny afternoon, and sample different fresh herbs in our herb garden. Again, she asks if she can eat some basil or mint or chives! And I generally permit her to indulge in them, because I know they are natural and vital to her well-being.
When she is outside, I observe her play – it is as if she comes alive, out of her shell and into her element. She plays with sticks, talks to herself about the different colors of flowers, splashes in puddles left over from the morning’s rain shower, collects rocks and asks about different garden bugs. Nature is healing for her, as it is for me. It centers her, grounds her, and calms her. It soothes her aching soul that is oft-riddled with anxiety and fear. But outside in the open sky and wilderness, she is free from worry. She feels comfortable in her own skin.
As I consider our beautiful, quirky little daughter, I realize she is not meant to fit into some societal box or stereotypical mold. Her gifts, like most geniuses and artists and eccentrics, is the fact that she offers a new perspective on life when most of us are just trying to survive. She reminds us that we are meant to thrive, to come alive.
Her little body may struggle, but her soul is very much in harmony with her Creator and all of the invisible, supernatural beings that surround us. She talks to them and about them – without apology – and I am reminded of the beauty of a childlike heart.
So, yes, my child is the one who won’t slide or swing, who is afraid to jump on a trampoline or bouncy house. She won’t probably talk to many people at birthday parties or willingly offer her name to a stranger or family acquaintance. She seems strange, and sometimes people pity her. But she is the one who will most likely pray for you at night when you are unaware she even remembers your name. She is the one who will pick a flower for you and say, “Did you know that God made all of the flowers?” She is the one who will touch your heart in the most unexpected, unconventional ways.
She exemplifies the heart of a child who is different and the gift of one who may seem invisible but has so much to offer if one takes the time to notice her sweet soul.
Copyright 2014 Jeannie Ewing