As originally posted on The Mighty on March 27, 2015:
“So what. So what if she’s a little smaller than other people. So what if she eats through a feeding tube. So what if she isn’t crawling or talking like other babies her age. She’s just fine the way she is and everybody’s different.”
If you’ve ever wondered what a 6-year-old thinks about having a sibling with complex medical needs, there you have it. “So what” is what they (or, at least, my 6-year-old) think.
My husband and I try to share age-appropriate information about our youngest daughter, Ava’s, health conditions as openly as we can with our oldest daughter, to try and allay her fears and prepare her for the inevitable questions and responses from others about her.
Part of our preparation has included equipping her with the words that she might use to help others understand and respect her sister as she grows up. We’ve had lots of conversations over the past seven months of Ava’s life about health issues, individual strengths and differences, how each of us needs help in various ways throughout our lives, yet I was completely unprepared for the depth of the response from Olivia about this recently.
We were fresh off the heels of a terrible incident at a nearby middle school, where a young man with autism had been severely beaten by a classmate, so bullying was in the forefront of my mind, and I decided it was time to talk about it.
“Olivia, we don’t know what Ava is going to continue to face as she gets older. Chances are she may be a little bit smaller than most other people. It may take her a little while longer than other babies to learn to talk or walk. We don’t know when her feeding tube is going to be removed. What do you think you might say when a friend or even someone you don’t know notices these things about your sister and says something about it?”
I can tell you exactly where I was standing in our kitchen, preparing dinner that evening when I asked her this poignant question and I struggled to hold back my tears as she responded. Olivia is one of the brightest, kindest, most compassionate children I’ve ever known, yet her reply caught me off-guard. I don’t know what I was expecting her to say, but I do know that over the past seven months, my greatest fear, besides Ava’s health, has been that Olivia is being put through too much in the midst of our difficulties and she might grow to resent her sister or the health problems that have led us here.
I never wanted her to be in the position of being the big sister to a sibling with health issues. I never wanted her to see her sister struggle to breathe, to eat, to grow, to develop. I never wanted her to be fearful of doctor appointments because they can lead to hospital stays. I never wanted her to have to be equipped at the tender age of 6 on how to fend off bullying remarks about her sister.
Most of all, I never wanted her to see her sister as someone who is defined by her health issues and the obstacles they have created. And guess what? She doesn’t. Her “so what” response was so heartfelt, so genuine, that I know she sees Ava as the unique individual that we believe God created, needs, obstacles, and all, and she adores her. As is.
I may never have wanted either of my daughters to experience what they have in the past seven months, but I am so thankful that what I wanted more than anything for them as sisters – a bond, a love, and a deep appreciation for one another’s strengths and needs – are gifts that have been cultivated in the midst of our difficulties.
And on the days when I struggle with what Ava is facing and what the future may hold, I now hold tightly to Olivia’s words. “So what… she’s just fine the way she is and everybody’s different.” Thank you, Olivia, for your wise reminder.