Morning in the Garden of Hope and Fear

I’ve been sick all week with a cold, which That Girl suffered through last week, so I have been tired and not in the best frame of mind. Probably a little overly emotional. But definitely tired.

This morning, as I was getting myself and That Girl ready to go out and run some errands, I went to get some clothes for her to wear. I had not had the spoons to put away laundry this week, so I left a basket of folded laundry in her room to be put away, and I grabbed a shirt out of the basket for her to wear.

It was a T-shirt that she got at Christmas. It’s a size 8, a little bit big, but she’ll grow into it, goodness knows. So I told her to come over so I could roll up her sleeves. And I noticed that the cuff of one sleeve had a big hole in it. A couple of holes.

I had noticed holes in the cuffs of some of her shirts before, in a couple of kangaroo sweatshirts I got her for school. I asked her about it, but she said she didn’t know what happened. They’re all Old Navy shirts, which — let’s be honest — are never the highest of quality. But to wear so quickly… I was disappointed.

But then, a light bulb went on this morning.

I asked her, right out, “Have you been chewing on your clothes?”

To her great credit, she answered me honestly in the affirmative. She didn’t lie.

Now, we’ve been working with an oral-motor therapist for almost two years now on various issues, but one of the more minor of those was putting things in her mouth and chewing. She’s actually had a therapy chew toy she has used for years. She has chew sticks now to work with, and I have always told her if she ever needs to she can chew on one of those. She’s also recently started chewing gum, which she can actually write into her IEP for school to be able to chew as she needs to in school. And many a day she has gone to Jo, her therapist, and proudly announced that she has not chewed on her scarf or shirt or neckwarmer or whatever since last visit.

Except all the evidence points to the fact that she is, still, chewing. Hard enough to rip holes in her clothes.

So I asked her when, and why. She said she does it in school, that she needs to chew on things. She doesn’t know why; she just feels she needs to.

She was standing in front of me, sobbing. She knows how disappointed I am. She knows how hard Daddy works to afford the things we have. She feels terrible. So I hugged her and comforted her.

But as I sat there with my sobbing child, I felt a fair bit of despair. It’s not a big thing to most people, I grant you. But it is something we’ve been working on for years. Something that has cost us a lot of time and money in appointments and exercises. And I began to feel this seeping hopelessness.

What if all this time and effort and money is for naught? What if it makes no difference?

You put a lot of yourself into these things, when you are parenting a child with special needs. You spend time and effort when you are tired, and you try to make it fun or at least tolerable, and you invest yourself in making sure your child gets what she needs, and does not feel different from other kids, and that she still has time to be a kid.

And you invest a lot of hope. A LOT of hope. So, when you hit a bump in the road like this, you start to lose hope.

Or at the very least, you feel your hope is misplaced. And you glimpse a new reality, one much scarier than you had dreamed of. Hope, in these instances, keeps the scarier of potential realities at bay. Hope makes your child’s future a little more rosy, a little safer, a little happier.

It cascades. If this is not working, what if… ? starts to enter into your thinking. All of the negative, and sometimes ridiculous, potential outcomes start to filter in. If this is not working, what if she does end up with TMJ pain? What if she starts smoking to satisfy the need to have something in her mouth? What if she starts lying to us about smoking? What if she starts hanging out with a dodgy crowd to smoke, knowing she has issues with befriending the bullies and the mean girls, and has no self-defenses?

And it extends. What if the money we’re spending, the debt we’re incurring, is all for naught? What if she’s not getting better with her visual processing therapy? What if she never develops working memory? What if she can’t graduate high school?

What if, what if, what if?

You know you are doing it. You know it’s ridiculous. But as a parent, you can’t stop. You worry about your kids. You don’t need any more cause to add to your worry. Your moments of hopelessness in those instances when they are small stretch out into a lifetime of fear, and worry, and the need to protect your child at all costs.

Meanwhile, back in reality, your guilt-ridden child is still sobbing in your arms. The future is uncertain and scary, but in this moment, your child is upset. Back to the moment at hand.

So I let her cry a little bit more. I told her that I knew it was hard for her to tell the truth, and it was very brave. I talked to her about how hard Dad works to be able to afford nice things, so we have to not chew on them, and if she needs to chew on something we have gum. I wiped her tears and her nose and changed out of the shirt she had quite literally wiped her nose on. And I sent her downstairs to put something on the TV and cheer up.

There will be no errands today. I’m sick and tired, we’re both emotional, and the weather is windy and rainy. Maybe tomorrow.

So I will wash my face, and set my jaw, and make a plan to do all her therapy exercises today. For her, it will reinforce some of the things we talked about today, but beyond that who knows. Maybe today will be the day it will make a difference.

My daughter is a garden. There are a lot of things that need work, but as one of her therapists said, if we clear out enough weeds and tend to it and let enough sunlight in, something beautiful will grow.

For me, I need to resolve to do her exercises, to tend to that little struggling seedling of hope for the future. Make it a little stronger, for the next time — as there will always be a next time — that weeds like hopelessness and fear threaten it.