A few days ago, I checked in with my new respite worker, who started working for me at the beginning of this month, to see how she was feeling about the job. Taking care of the Girl in Charge can take its toll and there’s no guarantee when I hire someone new that she will find that caring for a disabled child is a good fit. I was so grateful, and relieved, when my new respite worker just shrugged her shoulders and said with a smile, “She is wonderful.”
I thought it was the sweetest response. And she went on to repeat that phrase several times during the conversation, and later I found myself thinking about that word.
It’s a simple word. And not particularly profound. In fact, it’s rather commonplace. But that word has stayed in my head for several days.
The Girl in Charge… is wonderful.
After looking up the definition, I was reminded that the word ‘wonderful’ means “amazing, astonishing; to arouse wonder.” And the word ‘wonder’ means “to be filled with admiration, amazement, or awe.” It also means “to marvel.”
And then I realized that perhaps the word ‘wonderful’ IS profound- perhaps it SHOULDN’T be commonplace. And perhaps it is the most perfect word in existence to describe the Girl in Charge.
Last summer, I engaged in a little research project amongst my friends and family who knew the Girl in Charge personally and I asked them to share with me their feelings and impressions about her. As her parents, my husband and I are often too close to the situation to really see things with perspective. And I wanted to get a sense of who the Girl in Charge was through other people’s eyes- the impact, perhaps, that she had made in the world in ways that I couldn’t see.
One of my former respite workers said, “Before this job, I felt like I might do something wrong around [disabled] children, so unfortunately, I avoided interaction altogether. [But now], I am more confident with those who are different from me, especially others with disabilities. Once, while living as a missionary in France, a family let us into their house and one of their young daughters was nonverbal and had special needs. Immediately, I felt drawn to her and touched her hand and chatted and played with her before teaching the family. Afterwards, my companion remarked how I had interacted with her with such ease. As a result, this family seemed to really be touched by us. So, I am able to understand the nature of unconditional love more, and feel like I have been able to feel more comfortable with people of all abilities.”
A good family friend and former neighbor said, “[The Girl in Charge] is a teacher…. [She] teaches some fast track lessons so those who care for [her] and her beautiful kind may learn faster than the rest of us what to let go of…. [She] makes me aware of how spoiled I am to walk away and do whatever I wish with my body, time, and energy. [She] makes me nervous that if it were me tasked with caring for her, I may not be able to do what Susannah and her family do. But I see her. I see her sweetness, and the love she has planted in the hearts of those who love her. I sense my limitations when I am near her, and it pushes me to consider those limitations, and also helps me appreciate my own. Easy to think we should all be prettier, more perfect, more able, and then to be impatient with ourselves, hard on ourselves. I’ve been nothing in this life if not hard on myself. The Taylors and others like them remind me to just love…. “
A dear friend from my husband’s childhood neighborhood said, “[The Girl in Charge] is an example of how we should be… she is not swayed by the things of this world. She is not concerned with status or material things. She is happy when surrounded by those that love her. Her hugs are genuine and free. Her emotions are real, with no ulterior motive. She gives others the opportunity to be their best selves…. She enables us to give and receive love. She teaches me to be grateful for small things. I feel connected to [the Girl in Charge] and not just because she is the daughter of our friends. It is more than that. [The Girl in Charge] allows you to see beyond yourself. I have felt incredible joy in celebrating [her] successes. I remember watching the video of her first steps and then seeing it in person. It was an incredible moment – an obstacle overcome. It was triumphant for those watching. I cried, I cheered…. My time with [the Girl in Charge] is priceless as she brings a feeling of incredible love with her wherever she goes.”
My sister-in-law shared that, “About two years ago, we discovered that my daughter has a 51 degree curve in her lumbar spine. Living with scoliosis, and a brace, and impending surgery, has not been easy for [her], but I think she has gained insight and perspective from [the Girl in Charge.] We have had several conversations where [my daughter] has said, ‘It’s not fair that I have to go through this…’ and I have asked her, ‘Is it fair that [the Girl in Charge] and her family have to go through what has been placed on their shoulders?’ And [my daughter] has come to realize that while life is not always fair, it can still be beautiful and meaningful and so good.”
My sister-in-law also said, “[The Girl in Charge] gives the best hugs! And when you get a hug from [her], it feels like pure love. There is no guile or expectation. Just a sweet girl who can somehow break down the walls that people put around themselves.”
Another former respite worker who worked for us for 2 years while she was a graduate student studying occupational therapy, and who also lived with us for some of that time, said, “I take [the Girl in Charge] with me every day. I carry her around in my heart space and when I’m sad, stressed, angry or overworked, all I need is to think of her laugh- the sweet sound of that giggle and nothing seems so bad. That giggle has given me strength, hope, and purpose…. A video from miles away when I need it the most can bring me to tears and remind me what’s important… In every way, she is my foundation for being a good human. My values, core beliefs, standards for change are based on my time with her. She was two when I met her. But she changed everything. I owe my successes, my triumphs, and my hopes and dreams to [the Girl in Charge]. There is no one like her and without having met her, my world would be colorless and much more selfish.”
My dad said, “Having a granddaughter with special needs is deeply life-changing. It makes one very introspective about the value of life…. Knowing about [God’s plan for us] is the key to loving others in general and adoring children with special needs. These special souls have come to earth just to obtain a body. They are not here to be tested like the rest of us. They have not only passed the test already but likely have excelled way beyond a 4.0 GPA…. But any human being, with any maturity at all, who associates with a special needs child has to be filled with the noblest of human emotions such as love, charity, empathy, and gratitude. The desire to help is overwhelming and the willingness to stand with the parents is powerful…. I know I am a better man because of her influence…. Having a special needs granddaughter makes me feel kind of special myself.”
And another former respite worker, who lived with us for a year, told this sweet story, “I remember on one occasion when we had to put [the Girl in Charge] in her room because she was really upset. Those were hard times because the instinct was to cuddle and comfort her. But those instincts actually made her more upset, so we had to let her self-soothe. After she had calmed down, I went into her room to check on her. I can still see her, even now, standing at her window in the sunlight. She had one hand up and was staring at it while she wiggled her fingers back and forth. She liked to do that, to see the difference in light and shadow as she wiggled her fingers. She was so peaceful and calm when moments before she had been distraught. I knelt beside her and called her name. She smiled and giggled, and then collapsed onto me in a headlock/hug. I felt peace and pure love emanating from her just as sure as I felt the warmth from the sunbeams in the window.”
“This is just one of many special moments I had with [the Girl in Charge] and these are the moments when I was taught the most important lessons. Not so much in words, but in feelings. [The Girl in Charge], and children like her, are examples of how to enjoy the simple things in life and to embrace the wonder and delight of exploring the world we live in. They are also the best examples of pure love without motives or agendas. How many of us sit and contemplate the shadow and the light? How many of us remember how good it sounds and feels to hear our name spoken gently and with love? How many of us recognize that as acute as our pain can be in times of adversity, our peace and joy can be just as fierce and powerful?”
“I can honestly say, without a shadow of a doubt, that [the Girl in Charge] taught me to be a better human being. She taught me to have patience for myself and others. Life doesn’t always go the way I want it to and people don’t always behave conveniently to me. But I can accept that, and I can instead show compassion for myself and others. I can react with sympathy and empathy rather than with annoyance and anger. These are memories and experiences without which I cannot be myself, and I certainly cannot imagine who I would be without her.”
I cannot imagine who I would be without her either. The joy and peace she has brought into my life, far outweigh the heaviness of the burden of her care. And I’m so grateful that so many others have had the opportunity to be touched by her.
My new respite worker is absolutely right and chose the perfect word to describe her.
The Girl in Charge is Wonderful.