“The Sadness We Bring To A Diagnosis Should Not Become Our Child’s”

Devra Torres | Aug 19, 2016 | 7 cmts

One of my favorite bloggers, Kelly Mantoan of This Ain't the Lyceum, has two children with Spinal Muscular Atrophy. Her post this week is about that, but it's of interest to just about everybody, parents or not, special needs or not.

Kelly recalls:

I remember the first time Fulton asked me if he would be able to walk when he was an adult. I was getting him ready for bed, when BAM I was hit between the eyes with his innocent question. I remember answering him in a matter of fact way,  “No, you’ll always need a wheelchair.”,  and then getting a bit teary about it later as I recounted the episode to my husband.

Since that first time, Fulton and Teddy have asked Tony and I numerous times why they can’t walk, why can’t we just teach them to walk, and several other variations. As painful as these moments can still be for me, I realized very quickly that they were nothing of the sort for either Fulton or Teddy.

As a special needs parent, especially one who sees the milestones of her healthy children side by side with the limitations of her disabled children, I need to watch that I do not think my sons are any less happy than their siblings simply because they can’t do all the same things or require doing something differently.

When you have a special-needs child, it's ever-present. Even if (like me) you aren't inclined to build your identity around it, it's still easy to forget that you're seeing things through your own eyes, not your child's.

I want this post to remind you that Fulton and Teddy, and people like them, can speak for themselves and even I, as their mother, cannot fully share their experience. My stories may be about them, but they’re not Fulton and Teddy’s stories. My feelings may run the gamut, but they do not reflect how Fulton and Teddy feel. If my life is overwhelming, hard, frustrating, or upsetting, it is because that is my subjective opinion, and maybe I should check myself to make sure those feelings are appropriate, rather than assuming my life calls for such emotions. If my sons are not overwhelmed, frustrated or sad with their situation, why am I?

You see? She's not just saying "It's important for me to keep my feelings in check." She sees that life sometimes "calls for" some emotions, sometimes for others. Some feelings are fitting for a mother watching her child navigate the special-needs life, and others are fitting for the child himself. But more than that--each is separate and distinct, belonging to the subjectivity of one person, not another. Even if the two people are mother and son.

Maybe that seems obvious. But look again: it's surprisingly easy for us to try to "usurp" each other's subjectivity, in all kinds of sneaky or unconscious ways. Maybe we assume somebody feels the same as we do. Maybe we project our feelings onto other people. Or we try to manipulate them into feeling as they "should." Or into feelings advantageous to us. Maybe we think of other people's affective lives as extensions of ours. We can end up by forgetting they have their own subjectivity at all.

When Fulton and Teddy now ask me questions, I realize they’re asking with the same intention of any five or eight year old who casually asks, “Why is my hair brown?”, “Can I be a famous singer when I get older?”, “Why can’t I fly?”. Their disappointment is just as fleeting as when I tell them, “No, you may not make explosives.” or “No, we can’t have ice cream for dinner.”  *I* still feel a twinge of sadness because they won’t ride bikes or play football or experience many things my older children take for granted, but thus far, they won’t feel sad unless I imply to them they’re missing out on something great.

Now this is interesting. Even though Kelly very insightfully notes that she doesn't own their feelings--that their subjectivity and hers aren't one--she does see that she has a chance to influence them. She can do this by respecting their feelings as theirs, or by pressing her own upon them. She can spread the contagion of her own sadness upon their matter-of-fact acceptance of their limits--or not.

If later they become wistful because they can't join the football team, at least it will be their own wistfulness. Just as she shouldn't force hers on them, she shouldn't try to force them not to feel what they feel. Encouragement and realism is one thing; usurpation is another.

But it's tricky, especially in the case of parent and child.

For children who, due to severe disabilities, will not live to see adulthood or be able to function as adults, there’s no reason the time they do have can’t be filled with love. Children can feel love and joy from a bed. If we choose to see each moment they have as a drain, a waste, or pointless suffering, then that speaks to our perspective, not our child’s.

Lots of authors remind us that even a life of handicaps has dignity, that people with muscular atrophy or diabetes have just as much value as any "normal" person. So they do. But this point is almost the opposite: Kelly's not just saying that objectively her children are as valuable as anybody else's; she's urging us to take seriously their subjectivity. She's pointing out that unless we do that, our vision of the objective truth of their life will be hopelessly skewed.

It's a good reminder for all us "normal" people, too.