A Love Letter To My Youngest Child

 

My youngest, a daughter, is graduating from high school this month. A lot of kids are – two of my own already have, and have graduated from college too. Graduations, for whatever reasons, don’t normally move me. I’m rarely caught up in the rituals that we’re told to find affecting. I’m not much of a follower when it comes to matters of the heart – or of the tear ducts.

But this time is different. We’re still a few days out from the ceremony and I am already a mess.

My daughter has special needs. She was born with neurological issues which have had an impact on everything from vision to speech to language comprehension to fine motor skills to large motor skills to social interactions to impulse control to you name it. If it involves the nervous system, the odds are she has had to struggle to do what most of us accomplish with little thought.

She has also had the very bad fortune of having disabilities that can manifest in ways sometimes miscategorized as “behavioral issues” –  sometimes even by people who should know better, including a few unforgettable teachers over the years. She is very intelligent, but it takes her a long time to process language, a long time to formulate and express her thoughts; and those gaps can lead to interrupting, to frustration on everyone’s part, to non sequitors that derail conversations, and to all kinds of interactions that are unsatisfying all around.

Frustration has been a big word in all our lives. Frustration with the day to day, of course, but more importantly, more painfully, my daughter’s frustration with “having this” as she has put it on our most heartbreaking days, the “Why me?” days.

There is a curse to being a child smart enough to know what she cannot do, perceptive enough to perceive the negativity she brings out in others; and incapable of keeping herself from doing the things that bring it out.

“Why me?”

“Because life isn’t fair. You don’t deserve these challenges, they’re just yours. And you do an amazing job with them.”

It’s the only answer I know, every word of it true – except that amazing doesn’t quite sum it up.

Imagine being disabled. Imagine having to work harder at nearly everything than everyone around you. And now imagine that instead of those disabilities garnering you sympathy, they actually make people grow impatient with you. They cause your classmates to exclude you, and call you cruel names, cause even some teachers to bully you, to turn a blind eye to the mistreatment you receive from your peers. Now, remember, you are just a little kid. You are trying to find your way in the world. You see that other people aren’t like you. You know that many of them don’t like you. And you cannot understand why this burden is yours.

I don’t know what I would have done had that hand been dealt to me, but I’ll tell you what my daughter has done. She has persevered. She has worked harder at everything than I have ever worked at anything. She did homework for five hours a night when she was eleven years old, and wanted to stay in a “normal” school, trying to prove that she could. She made excuses for kids who were mean to her. “They probably have people who are mean to them, so just have to take it out on someone.” That, when she was ten. She has gone to therapy after therapy. Social groups. Occupational therapy. Psychotherapy. Art therapy. She has never, not once, given up – though she has broken down with grief at times; but only to clear herself of what has built up, so that she can move forward once again.

And she has never learned to hate. This is the humbling miracle I witness every day. She loses her temper now and then, she is no saint, but still, she is the kindest, most loving, most nurturing, and most generous person I know. She has never allowed either her own difficulties, or the cruelty they have inspired in others, to embitter her. She, a child whose computer was routinely hidden from her by kids at school; who heard about party after party to which she was not invited; who has received contempt and worse from some of the adults charged with her care; who has watched her siblings attend their Ivy League schools, surrounded by friends, while she had none of her own.  No friends, and no such prospects.

Through it all, she has done something I didn’t know people are able to do. She has used these experiences to make her more empathic and more thoughtful. Rather than waste much time hating her tormentors, she has focused on caring for those who might benefit from her care. She is the champion of classmates who are struggling, the defender of all who have been singled out in ways she recognizes all too well.

And to be clear, this is not itself some aspect of her disability, some failure to comprehend what’s been done to her. She’s very smart and fully understands what she is doing and could sit with you and explain with clarity and well-examined intent that having suffered in her life, she wants to lessen the pain she sees in her world.

Like I said, it is the miracle I have witnessed every day.

And now, with the help of some amazing teachers just this final year of high school, she has learned to moderate the behaviors that have caused so much trouble, and has found compensatory strategies for many deficits. She knows to explain when she hasn’t understood something, rather than to act out. She has shed enough anxiety that she can maximize her much-improved communication and social skills. And she has friends. Real friends.

There are two dozen or so other girls on her “team” at school. Her advisor recently told me that my daughter is making a list of them all, and for each teammate she is writing a couple of sentences, saying something nice about that girl. Maybe describing a good interaction they have had. Maybe noting a kindness my daughter observed. She wants to leave each of them with a little love note of encouragement by which to remember her. Because that is who she is.

But now a confession: I am nowhere near that good. I do hate the people who have tortured my child. Not the children. I don’t blame them, most of whom are struggling with issues of their own. But I hate the parents who didn’t intervene. And I despise the teachers who turned their backs, allowing youngsters to enact whatever frustrations the teachers themselves felt. I loathe the ones who, to quote my girl, “only told me what’s wrong with me and never what I do well.” I have no sympathy for them, no empathy, no milk of human kindness to spare. I catch myself fantasizing that at some point in their miserable, cold-hearted lives they understand the damage they did, to her and doubtless others, and despise themselves. I hope that the teacher to whom I said, “I don’t know how you sleep at night,” cannot.

But I am a mother. How else could I feel? I am the one who has had to answer the question, “Why me?” to a sobbing nine year old, twelve year old, fifteen year old girl. A mother who has seen her daughter suffer year after year, and watched her daughter use that suffering as a reason to open her own generous heart.

Even up to a year ago, I doubted I would ever see this child graduate high school – much less do so surrounded by friends, and with college plans of her own. But that is what is in store for me this month.

I have long considered her my heroine, the person in the world I most admire. A rite of passage does not amplify my feelings, but it gives me an occasion to absorb the full force of what this young woman has accomplished, and has learned and, yes, has also taught – even if her mother is unable to act on the lesson that hate should never be allowed to beget more hate.

Maybe I will get there one day.

Meanwhile, consider yourselves warned: There will be floods.

 

 

 

Posted in updates and tagged , , , .