Hope Hurts

A while ago, a friend of mine wrote about how mothers of autistic children cry all the time. She explained that the tears of happiness are just as plentiful as those of sadness. And to be honest, I had never really thought about it before.

After considering this idea, I decided that I almost never cry about my own “Spectrum” son, Oliver, unless I’m happy. And I wondered why. Why would I be more likely to burst into tears over one of Oliver’s triumphs? I’m not exactly known for being particularly emotional or effusive. I never cry at weddings. Expressions of love from family and friends make me smile, not tear up. I don’t really cry that much in general.

I’m definitely one for the frustrated tears though. It’s the reason why my children refer to my recent attempt to travel solo with them to Florida as “Remember that time you cried in Key West?” So wouldn’t it make far more sense for me to fall to pieces when faced with adversity?

And maybe that is the case most of the time…but not when it comes to Oliver.

I literally can’t think about scary “what ifs” when it comes to my son. If I allowed myself to actually go there…to imagine the worst…I wouldn’t be able to function.

We all have different reasons for our emotional reactions. We’re different people—our special needs kids have different challenges and levels of potential. We adapt to all of that and don’t look back. Or at least we try to focus on today. We don’t make plans for a future if it seems uncertain.

Certainty plays a significant role in the emotional life of a mom with a special needs child.

Some know exactly what the road ahead holds for them. I recently read a heartbreaking accountof one mother’s sorrow over her severely bipolar son’s life as “Pinocchio.” She only gets to see him as “a real boy” a few times a year, when his true personality randomly—miraculously—emerges to initiate meaningful conversation. To hear him talk about his hopes and dreams is a gift that comes with the terrible price of knowing the truth. She knows that he will always be dependent on her. She knows that he will never get married or have children. She knows that she will have to live for mere moments in her relationship with him. This certainty hurts.

But others—like me—don’t really know what the far future holds. We are allowed to dream a little. Or a lot…

Oliver’s processing disorders make him very delayed, but slow progress is better than none. I see how different he is from the other kids his age—and that’s hard—but I also see how different he is from the boy he was last year. He speaks in full sentences now. He doesn’t roll around on the floor while the teacher is reading a book (or at least that’s what she tells me). He’s more interested in other people. He wants friends. He participates in the world at large.

So I focus on that. I compare him only to himself. And as I marvel at how far he’s come, I assume that he will continue to achieve. That he’ll eventually catch up. I fervently hope that this will happen when he’s young and won’t remember being so different. As a six year old, he views others through his own eyes. He doesn’t view himself through theirs.

I rarely imagine what life will be like if this doesn’t happen. It hurts too much. Uncertainty has it’s own price.

Instead, I conjure clear images of the near future; of him learning to read and being able to have real conversations with friends. I throw money at therapies that seem to work for him. I look him in the eye and tell him he’s totally weird, and that I like that about him. I’m fairly certain that he won’t eventually grow out of his quirkiness. So I want him to embrace it, see it as something that makes him, “him.” I imagine him a little older and a lot more confident, possibly befriending other kids who seem a bit lost.

I hope a lot. And I believe that it’s all possible. That anything is possible.

And that hurts. Because if anything is possible, then it might not work out the way that I’d like it. He might not catch up. He might not be confident or embrace his otherness. Or he might never see the difference and just feel like an outsider

Every day, I encounter lovely people who are just a little strange. They seem to be off tempo with the rush of humanity swirling around them. They miss beats, they smile too wide. They seem somewhat odd and make others feel slightly uncomfortable. And I do what we all do. I smile back. I respond positively to their a-bit-too-muchness. I’m kind. I set a good example for my children.

I don’t like to think about the fact that an uncertain future may hold something similar for my own son. The image of him being someone who inspires people to be kind in spite of their discomfort shouldn’t make me sad…but as long as there are other possibilities, it will. If this is what the future holds for him, we’ll all be fine, and we’ll be happy. But for now I just hope for something else.

My heart clenches when I think about those “what ifs.” And I do feel some guilt over this because I am SO LUCKY to have been given the option of hoping and dreaming for my child—a very basic element of parenting that’s not afforded to all. And as much as I may have more worry and heartbreak than some parents of typical kids, there are just as many who would take offense to my attitude. How dare I feel anything but grateful for a sweet, loving boy with all of this potential? He smiles at me. He talks to me. He can run and play. He’s healthy.  He’s alive.

But in the darkest corners of our hearts, we allow ourselves to be selfish, to want more, to push aside gratitude and make way for secret fears.

This hurts more than anything—to hope so much, knowing that it may be for nothing. To feel the shame of not fully appreciating the gift of a precious child—my son who has made me a better person for knowing him.

So I don’t give the scary “what ifs” very much of my attention. I acknowledge those feelings from afar. Then I stuff them in a box and place them out of sight. I focus on my hope.

I don’t cry when I see Oliver struggling with words that come so easily to his younger brother and sister. I don’t cry when I see work coming home from school that is so obviously behind what he should be able to do at his age. And I absolutely DO NOT cry when he does. I smile and help and tell him he can do it. That it’s O.K. It will all be O.K.

All the while, that box or fear and worry and sorrow and anger fills up. And it gets harder to swallow the lump in my throat, to draw air into my lungs when it feels like all of the oxygen has been sucked out of the room. To move when I feel paralyzed at the sight of demons lurking in our uncertain future.

And then something wonderful happens. I see him playing a game with other kids, maybe even leading them for brief moments. Or I hear him singing a recognizable song. I witness him correcting his father’s misstep in complicated Lego construction, actually saying “No Daddy, that’s backwards.” To be given a view into the future reflecting all of my hope brings tears to my eyes.

I can cry tears of happiness when my hope is validated. It’s safe to open the box and air out my fears. I can let myself cry when I’m happy, when I know that I’ll be able to stop crying.

And that is why. For me, there is no option of angry or defeated tears. I simply can’t go there. If I did, I don’t know if I’d be able to come back.

And I’m needed here. My hope is important. I believe in the power of it. I will make good things happen through sheer willpower alone. At the very least, I’m going to try.

So if you ever see me crying over my son, yes, there are a lot of emotions involved and I’d be lying to say that they didn’t include the dark and scary ones. But I’ll be smiling. And I’ll be hoping.

Originally posted on Health News, HERE.

6 thoughts on “Hope Hurts

  1. Tracey - Just Another Mommy Blog

    I understand the tears of "Oh my gosh! This thing is NORMAL about my kid!" Though I will admit that I HAVE cried over the what if's, too. I can't dwell on them, for sure. But I definitely see my child as someone that will never be "just like everyone else". But THAT'S OK! I've learned that it's what every "normal" person secretly hopes for, in a convoluted way. We all want to stand out for being special. Maybe not in the exact way that my son is special, but he is unique, without even trying. I'm a little jealous…

  2. Stimey

    "Remember that time you cried in Key West?" OMG, so funny. I mean…now. Probably not then.

    Just this past Monday I had to fan my eyes when Jack's teacher told me she wanted me to come in and teach his class about autism so they could understand him better. The appearance of people who really care and want to help? They do me in every time.

  3. Heidi

    Oh, Kate, I'm so touched that you shared a link to my post. It means a lot to me–thanks so much. And hugs! Mine is almost 22 and I "sometimes cry" pretty darn regularly.

  4. Loukia

    You know what? None of know what the future holds. That's the scariest part of motherhood, the part that keeps me up late at night, always worrying… you're not alone. We all don't know.

  5. Deidre

    I love this! You described exactly how I feel about my daughter with ASD. Without hope, what else is there? I feel so lucky to have hope. But some days it's hard, and yeah, neurotypical would be a lot easier….perhaps. Every kid comes with his/her unique set of "issues". Without the challenges, I know for sure I could not have become the person I am now. My daughter has called me to be the person I was meant to be. And all I can do is hope that I can help her become the person she was meant to be.

  6. Heidi

    This is timely for me today. The reasons why are too long to get into here, but know that I needed to read this today. Beautiful, Kate. Thank you.


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