For those new to my blog, I’ve mentioned in previous posts that my 8 year old granddaughter, Susannah, has a particularly aggressive strain of Cystic Fibrosis, with a secondary IgG Deficiency. Her daily life entails a lot of treatments and medications and she also takes a weekly IVIG infusion (hooked up to a needle and dispenser like a blood transfusion for a couple of hours on Sundays).
Last night, we went to my daughter (Susannah’s mommy), Miranda’s, house for Christmas dinner. While waiting for dinner, her kids planned a dance performance to entertain the adults. All three children (Susannah and her two siblings, Charlotte-10 and Reid-5) are very gregarious and love to perform. I attribute that love of being in front of people to two things; first, both parents were Division 1 scholarship athletes—that is all about performing in front of people—so the kids were kind of ‘born into it,’ and two, the kids attend a small private school (The Lucy School) with an arts-based curriculum. Drama is one of their favorite classes.
Susannah was the first performer. [I’m sure this decision didn’t come easily as the three of them fight constantly for the #1 position in everything—another trickle down effect from the overly athletic parents!] She is a tiny [but mighty] little snippet of a person, weighing the same amount as my four year old grandson, as the inability to absorb nutrition and gain weight stunts her growth: typical for kids with CF.
The music began and Susi twirled into the playroom in a silky flowing dress, sans her ever present glasses (her vision has been damaged by treatments). My first thought was how beautiful she looked, like an angel, really. Susi is very athletic and somewhat tomboyish so most often you will see her decked out in riding gear, swimming gear, or some other outfit that allows her to play hard (when she’s not hooked up to some crazy looking treatment machine). My second thought was how graceful she was. Like I said, she approaches everything in life with a gusto unlike any other child so most of the time I think of her as adventurous, rough and tumble, slightly unruly…but graceful? I had no idea she could be graceful. I was mesmerized.
I was fully absorbed in the beauty of Susannah’s performance, imprinting it upon my mind and heart as I do with all things ‘Susi’ when I was distracted by her older sister. She was standing on the chair in the background doing exaggerated and outrageous dance moves . I shook my head at her, silently imploring her to let Susi have her moment. No luck. In the next instant, another distraction began. Reid began to leap out on the floor where Susi was dancing, rolling around doing hip hop moves between her feet. I implored him to get up allow Susi to finish her dance to no avail. I guess she’s used to it because she just carried on as if no distractions were taking place.
But I felt very upset over what I felt was their selfish behavior and (not for the first time) wondered if they would act differently if they knew their sister had a terminal illness. They know she is sick, and they know that she gets a lot of attention because she is sick. And because they are kids, they unconsciously rebel against the one getting the extra attention. Makes sense, even if the extra attention is spent doing [horrifying] treatments and taking trips to the doctor and hospital. What they see is Susi gets to skip school and spend days with Mimi. Susi gets to spend hours daily on her iPad (her distraction during said treatments). Susi gets to eat anything she wants (she needs a high caloric/fatty diet to try and absorb nutrition). Susi gets to go to her sports even when she misses school (the activity is actually therapy for her lungs, which is even more important when she is sicker). They see Susi with an entirely different set of rules and don’t fully understand why. When they are ‘sick’ they don’t get to do any of those things.
Then I wonder: when are kids old enough to know scary things like “your sister is not going to live as long as you”? Think of the questions that would raise. So, I’m not being critical of my daughter when I say that hiding the truth is what is causing the problem (or at the very least allowing it to exist), because I know I would hide that harsh truth as long as I possibly could too. However, there is a part of me that wonders if the surviving kids will one day struggle with guilt because they didn’t know and could have/should have been nicer.
I guess that is the age old question, isn’t it? Would we treat someone better if we knew they were dying? Do we deserve that opportunity? Or should we try hard every single day to show our best selves to our loved ones, keeping in mind that any of us could die at any minute—we just haven’t been advised of the likelihood.
I have often told (warned) my kids and my husband that I would not tell anyone if I found out I had cancer or some other incurable disease. You should hear the angry comments that gets! But, honestly, I couldn’t bear to have that pallor hanging over our relationships. It is hard enough to live this life, without having that kind of burden hanging over your head. It would make you feel like you could never just be yourself with them again, and could only show your upbeat, positive self to them. That type of behavior would make your relationship become forced—somewhat false. When I think about that, I suppose I would wait as long as I possibly could to tell my children if one was terminal.
On the flip side, Miranda (Susi’s mom) is the most vocal about the injustice of my ‘no tell’ scenario. She says it is unfair and would make them all feel betrayed by me—like I had lied to them. She sees it as different because my kids are older than her kids…but is it? Your kids are your kids. I think that as soon as kids reach the age of reason, they see omissions as lies and inequitable treatment as ‘unfair.’ The real question here is, what is the age of reason?
According to Common Law, the age of reason is 7 and the age of responsibility is 14 (legal-dictionary/thefreedictionary.com). Those are two very different aptitudes, so I didn’t find that information to be particularly helpful. Growing up in the Catholic church, I was always told that 7 was the ‘age of accountability’—the age when a child supposedly knows when they are committing a sin. Now that I’m an adult observing kids, I’m not sure I agree with that one either. However, when a group of scientists assessed the executive functioning skills of children, they determined that analytical reasoning skills were developed around age 15 (science20.com 12/15/12). That one seems really old to me. With all of these insights and opinions, how could you ever decide when is the right time to share such profound information?
Realistically, there probably isn’t a definitive right time–a set age–to share life changing information with your family. I guess you just have to go with your gut. Call it what you choose: motherly intuition, a sixth sense, the Holy Spirit; but the truth is that nobody can dictate when your loved ones will be adequately prepared to hear such devastating news. Is there ever an age when it would be easy?
I think that for my part, I have to be more patient and understanding when Susi’s siblings get jealous. I think it would help if I spent more individual time with each of them, but it is hard to push down that feeling of “spend any available time with Susi.” I am already living the guilt, but as you know, guilt is my comfort zone. Realistically, Charlotte and Reid’s lives are constantly impacted by their sister’s illness and they rarely complain. Charlotte is especially kind about last minute cancellation of plans because Susi is sick and Reid always tries to entertain her. Maybe they sense things they don’t yet know.
The one thing I have not mentioned is whether or not Susannah knows how ill she is. The answer is that nobody has ever told her, so no, I don’t believe she knows. She was born very sick and went through three years of invasive testing before someone finally tested her for CF. Sick is her norm, and doesn’t phase her in the least. She may miss school because she gets too weak to think because of lack of oxygen, but she never loses her personality and upbeat spirit. Just last month, she won ribbons competing in swimming and the following day found out she had pneumonia, bronchitis, and sinus infections. She is the most resilient and fearless person I’ve ever known…so when the time comes to confront this disease, I think she will take it in stride and press on fearlessly, never wasting a single minute of this precious life of hers. We could all learn a thing or two from her.
“It is not the length of life, but the depth.”
― Ralph Waldo Emerson