When you are a special needs parent, you are often forced to face a host of heavy questions. What will happen when my child gets too big for me to lift? What will life look like when she ages out of school? Who will care for her after I am gone? How will we pay for that care?
These frightening unknowns cross my mind on a regular basis. They’re difficult to think about and uncomfortable to discuss. But at least they’re topics that can be broached. There’s another, even more serious question no one seems to want to voice aloud, let alone talk about. But I’d bet my last shred of sanity I’m not the only one asking it.
Is my child living a good life?
I found myself secretly wondering this during the summer when my daughter, JJ, first began having seizures. The seizures themselves were terrifying enough, but what was equally concerning was the way in which her body reacted to her anti-seizure medication. These medications can be life-saving, but many come with serious unwanted side effects.
Every time we tried a medication or changed a dose in an attempt to control her seizures, it wreaked havoc on my daughter’s body. While we experimented, she slept most of the day away. During the few times she was awake, she was so tired and shaky she had trouble even holding up her head. For someone who uses eye contact to communicate, this is problematic, to say the least.
JJ’s life was made worse by the fact that it was July when all this began. Most days, it was too hot to take her outside—something she enjoys even when tired. Unfortunately, there wasn’t any better entertainment to be found inside our home. At the best of times, I struggle to keep my daughter entertained. She can’t do much with her hands or process anything on a screen, so toys, movies, and online games aren’t an option. We usually end up listening to music, but even that can get pretty old. Usually, JJ’s favorite thing to do is to go to school—a place with specialized equipment, individualized activities, caring teachers and therapists, and other children.
After her seizures began, my girl spent much of July and August sluggish, bored, and unable to communicate. She slept, rested, or whimpered in someone’s arms most of the time. There was little she wanted to do and few joys in her life. She wasn’t the same bright, sweet, slightly sassy girl we all knew and loved. Instead, she was a drooling, lethargic, glassy-eyed zombie. Sometimes when I held her, it felt like she wasn’t even there.
Luckily, there was a light at the end of the tunnel. I knew we would eventually find the right dose of medication and that her body would adjust to it. School would start again. Time would once again fly by instead of crawl.
But I couldn’t stop asking myself things I knew I shouldn’t. What if we didn’t have the school year to look forward to? What if the side effects of the medications had been permanent? What if this were the way JJ’s life looked all of the time?
That summer allowed me a glimpse of a life in which my daughter’s boredom and suffering outweighed her happiness, and it was absolutely terrifying.
In the world of special needs, I find that we often focus too much on parents and siblings and not enough on the special needs children themselves. It is much more comfortable to talk about the effects of children’s disabilities on the people around them than to discuss how the children cope with these disabilities. Caregivers tend to concentrate instead on the lessons their special needs children teach them.
I find this way of viewing things okay up to a point. But it becomes problematic when these life lessons are used to justify a child’s existence. Many people talk as though a person with disabilities is in our lives in order to show us what is and isn’t important, how to be kind, and the beauty to be found in diversity and difference.
But what of these people themselves? I worry that they lose importance if we focus on the things they can teach and show the rest of us. What about their life, their struggles, and their hopes and dreams? Of course, everyone is entitled to their own belief system, but this is the very reason I am not very spiritual. I hate to think of some sort of deity making my daughter suffer so that I can learn more.
Because there’s no doubt about it, JJ does suffer, every single day, in one way or another. Either she is too tired to function, under the effects of a powerful seizure, struggling with gastrointestinal pain, or simply frustrated beyond measure because she cannot express her thoughts or control her own body.
Her summer of seizures opened my eyes to the complexities involved in this daily suffering. I came to realize that there are two questions we often ask ourselves when it comes to our loved ones. The first one is simple to answer, if not to implement. Am I giving them the best life possible? If we are able to answer yes, this can be a great comfort to us.
I work hard to minimize my daughter’s daily pain and to maximize her pleasure. I got her into a special needs school that treats her well. I applied for an adapted, motorized car so she can ride around with other children in the neighborhood. I curate multiple playlists of her favorite music. I spend hours with her snuggled on my chest while she naps. Whenever JJ struggles, I can remind myself she would be struggling even more were it not for my continued hard work.
However, there’s a thornier question I find has no easy answer. Is this a good life? Unfortunately, my daughter cannot answer this for herself yet. She is too young to even understand the broader implications of the question. Equally unfortunate is the fact that, though this question has no real answer, I cannot help asking it. In the face of her daily suffering, it would be impossible not to.
I don’t have any great words of wisdom or profound conclusions to share about this conundrum. I only know that each of us must find some way of answering this question for ourselves when our loved ones cannot. And it must be an answer that makes some kind of sense, that resonates with us in some way. Perhaps we believe that a good life is one in which a person finds a reason to continue fighting. Maybe it is a life full of love and connection. Or maybe you think like I do. I can’t give JJ a “good” life or even know if she judges hers to be good. But I can give her one in which she is valued, respected, and knows that she's important.
My daughter is young, and it is still early days for my family. I have no doubt my thoughts and feelings about all of this will evolve over time. Right now is not really the time for making sense or finding lasting meaning. I’m guessing this comes later, when your child is older.
This is why I’ve been looking to more experienced special needs parents in the Rett community for guidance. I have made a special effort to talk to these people, read their posts, and listen to their podcasts. I wish I could say it has been helpful, but while there is a peace in many of these parents’ lives that I admire, I still don’t find it as comforting as I’d like. Because their peace almost always appears to come from that common thread running throughout the special needs world—the life lessons we learn from our disabled children. As someone who is still trying to make sense of her own child’s daily suffering, I find this frustrating.
Instead, I wish these experienced parents would talk more about their child’s life. Do they think it is a “good” one? How do they cope if the answer is no? Why do they think this is happening? Is there meaning to be found in any of this?
Perhaps each parent would answer these questions differently. Perhaps their responses would change according to the hour or the day. Or perhaps there wouldn’t be any real answers at all. I’m not sure.
The only thing I know about my questions is this: I can't be the only one asking them.
What do you think makes a good life? How do you provide this for your child? Let me know in the comments below.