Resilience or Resistance?

How do I find the line between teaching my child to seek self-acceptance in an unjust world and finding and fighting for things that we can change?

Dietmar Rabich / Wikimedia Commons / “Münster, Park Sentmaring — 2014–3969” / CC BY-SA 4.0

Every morning, my son gets a protein shake with a host of nutritional ingredients to help him keep growing. It has been the only thing that we have ever found to keep his weight at the one percent line on the pediatric growth chart. Without it, he loses weight. He loses muscle. But he hates it with all the passion of a fiery seven-year-old. “It’s not fair!” I hear each morning.

“You’re right.” I tell him. “It’s not fair at all. But this is all we have the power to do about it right now.”

If you were to look at my son now on the street, you would see a somewhat small but otherwise perfectly healthy little boy. But as he grows, there is a chance that this will not always be what you see. My son has a rare neuromuscular condition linked to a genetic error in the SELENON gene. Currently, it makes him small. He tires easily and he cannot lift his head and neck when lying down. It may be why his voice is high-pitched, though that may be due to a different set of genes altogether. He cannot run fast, and he relies on quick, jerky movements when his lack of strength cannot perform a task slowly and smoothly.

Currently, there is no cure, and as his symptoms have not progressed to the point where medical intervention will make a big difference, there is no treatment. We have seven specialists who watch him, on different timelines, to make sure that he can eat, breathe and move to the best of his ability. Sometimes, we see a physical therapist for a few months, and then we are discharged with homework exercises and a return date. For now, he is considered to be on the low end of the spectrum in regard to symptoms, and for the most part, his doctors are proud of his progress through this somewhat newly discovered, extremely rare condition.

This may not remain the case. Though he is unlikely to lose the ability to walk, by the time he is a ‘tween, he could lose much of his core strength and end up with rigid posture, scoliosis, and need potential spinal surgeries to stabilize his lack of core muscles. Adults with this condition can tire easily and may rely on devices like scooters and wheelchairs to assist when they are too tired to complete the tasks of a typical day. This is not a guarantee; the diagnosis has only been found in a very small number of people and the symptoms can vary greatly for reasons that are not yet understood.

Emotionally, it is not always roses for him. He is not a fast runner, and his gait can, as he tires, begin to resemble something akin to John Cleese’s silly walks. As his mother, I see a determined child not allowing a life circumstance to stop him. But this is hard to translate to a group of boys who still follow the playground rules — the strongest and fastest are kings. And it is not my place to do so. In fact, intervening will probably make everything worse for him.

At times, he is stoic about coming in last when he runs, or about someone making fun of the way he moves. He is more openly upset when his baby brother, a year and a half younger, outcompetes him in every athletic endeavor. But I know that in both cases, it bothers him. He is not immune from this even within his family; last summer, a well-meaning relative was overheard by him while making fun of his high-pitched voice. He came to me, and though I did the best I could to comfort him and he said he was okay, he developed a series of OCD tics soon afterward that lasted for months.

My son desperately seeks the approval of his peers, on their terms. Though he is a (mostly) obedient child, the only trouble he has been in was when he was dared by the more popular children to do something extreme. He is ferociously brave, though not fully aware of the implications of his actions at seven, so we actively work on thinking through what happens when you do things against the rules, and consider why something might be against the rule in the first place.

And yet. There is nothing more that my husband and I can do at the moment but watch, wait, and teach my son to accept himself as he is. There is no enemy to fight here, only an unfortunate combination of genes. While we wait, do we encourage him to display his condition proudly, knowing that it will make him different and fearing that it will give him the excuse to limit himself? Do we avoid mentioning it outside of our family until his symptoms are unmistakable to the outside world, even though it may be misinterpreted (worst of all, by our son) as shame? This is a confusing needle to thread; finding the path that leads him to self-acceptance, self-love and self-reliance is not an easy feat.

We live in an age of movements; #MeToo and BLM have dominated the news. It is a plea to the world to see a pattern of unfairness and to stop accepting it as normal or justifiable. The Gen Z mentality of owning who you are also allows more options to self-identify than the original handful of buckets that those of us raised in the 80s and 90s were afforded. But fighting an enemy in anti-movement protestors or legislators who won’t pass your bills is not the same as believing that you are worth fighting for. Declaring who you are is not the same as learning who you are, leaning into your strengths and forgiving your weaknesses and struggles. As much as I want to fight the world for not understanding and loving my kind, loving, gifted son; is the time for this now, or does this battle come after he’s done focusing on the fact that his world is fundamentally unfair?

In so many ways, we are a family of privilege. We fall squarely (as far as I know) into the middle of normal in the categories of income, faith, and sexuality. We have not been persecuted due to culture or race, and we live in a small town that is, for the most part, free of violence. Our life choices were mostly our own, and have been, for the most part, successful and not marked by overbearing tragedies. My children have been raised without much need for fear, and our situation could be infinitely worse.

But the fear that this world that excites my son will let him down someday soon and in a heartbreaking way continues to loom. It is possible that this is unfounded worry, that a cure or treatment will come in a rapidly shifting world of gene splicing or that his symptoms will always be mild. However, there is no way to know yet how his condition will develop or how the people he meets will treat him if the symptoms become severe. My instincts to protect him and to prepare him are both strong, but I cannot see how to prepare him without causing fear, risking self-loathing or stoking anger at the unfairness of the world.

For now, we do what we can about a situation we also cannot change. As a family, we cry together at unkind words that pierce his sensitive heart. As parents, we listen and encourage him to find dreams to chase and things to excel in. He is bright and excited to learn — almost two grades ahead in math and a ferocious reader. He loves to draw and is learning to sew his own superhero costumes. He won’t ever need to worry about losing these skills as the brain is not affected and the muscles that will weaken as he ages are related to his core strength and not his fine motor control.

We answer questions about why people are sometimes mean, and why we must be better than this in return. We don’t allow him to use physical limitations as a chance to quit, but encourage him to find a different way to achieve the same goal when he just doesn’t have the strength to do it the typical way. And we hope that it is enough, when he is older, to navigate the world’s unfairness with courage and integrity, to know how to rely on himself and to love himself. Even if our fears are true and he discovers that there are people who cannot do the same.

Is it enough? I honestly have no idea.

I am a writer, mother, scientist, and seeker of a meaningful life. Not necessarily in that order.

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