There’s a book that my oldest daughter enjoys. It’s called “My Many Colored Days” by Dr. Seuss, but this is not a typical “Dr. Seuss” book. The book goes through different colors, connecting each color with both an animal and an emotion. For example, one page reads, “On bright blue days I flap my wings,” (showing a drawing of a blue bird) “Some days, of course, feel sort of brown. Then I feel slow and low, low down” (with an illustration of a bear in a cave). It was clearly intended to teach children to recognize their emotions, and also learn colors and animals while they’re at it. When I think of how I feel about Rett Syndrome, this book sums it up.
Some days, we are happy and hopeful, seeing progress Anna has made in therapy, or listening to her laugh incessantly over tiny, silly things. Those days are bright yellow and green, giving us the notion that perhaps we really can do this.
Some days, we are sad. A muddy, grayish day. Mourning the skills she once had; lamenting as I think about how I’ll never hear her say “Mama”, or “I love you.” Regretful that we didn’t notice the signs earlier, or pay closer attention. Going to friends’ birthday parties, or even just having a playdate, can bring feelings of isolation, and sadness upon realizing that friends’ children who are younger than her, have surpassed her abilities. Hearing a friend’s child–a year, or even two years, younger than Anna–speaking in full sentences, while all she can do is grunt? That cuts to the heart.
Some days, we find relief. We have a good day; we are blessed by friends or family; we have a time of rest. When she is content, we are content. When we can go out and do things, without an incident, that’s a breath of fresh air. When a day goes smoothly, we rest in it. We savor it. Those days are aqua colored. Like clear waters at a pristine beach.
Some days, we feel guilty for not doing enough for her (what is enough?), and for staying in denial about her regression for so long. Guilt over snapping at her when I’m frustrated or tired, not giving her my full attention when she needs me, or not giving Leah the attention she needs, because we are giving Anna attention. Those days are black; dense with fear.
Some days, I feel just plain tired, like a misty, purplish blue, like an old bruise. We go through the fog not by clarity of sight, but simply by force of habit. Not only is my youngest keeping me up most the night, but then early in the morning, we have school, therapy, and other activities. But there is emotional tiredness, too. I frequently feel drained–or paralyzed. Some days, just feeding them and keeping them safe is all I can manage.
Some days, I feel frustrated. Even angry. On those fire-red days, I hate Rett Syndrome. Hate it. When something is wrong and she can’t tell us what it is. When I see the longing in her eyes, wanting to communicate, or to hold something, and she just… can’t. Sometimes, I’m even frustrated with her, even though I know it’s not her fault. But I’m still frustrated that plans are put on hold because she’s too sleepy. Or that she’s doing her “pterodactyl screech” in the middle of the library. Or that she’s stopped walking in the middle of the parking lot, because she just can’t go any further. Or that I’m still changing her diapers. Or that she threw food all over the kitchen at mealtime (and squished it into her hair).
And amidst the whirlwind of emotions, I have to stop. I look at Anna, and I have to chastise myself. It’s not about me. It’s about her. She’s the one with Rett Syndrome. Imagine what she must be feeling.
She must be frustrated, and even angry. If you were trapped inside a body that didn’t do what you wanted it to do, and couldn’t communicate even the simplest of needs, wouldn’t you be angry? Her meltdowns and periods of sobbing may be confusing and inconvenient for me, but they must be the culmination of the pain and frustration of never being able to communicate your needs, wants, ideas, or feelings.
She is tired. I know this for a fact. How many four year olds do you know that still take a three hour afternoon nap? Even after taking an hour nap in the morning? Or how about falling asleep nearly every time she gets in the car? Or while she’s eating? She’s exhausted. And surely she, too, is emotionally and mentally drained. Wanting to communicate, to move a certain way–and not able to do so.
As I think about her falling asleep, I wonder–what does she dream? Is she running, playing, even talking? Is she soaring up high like an eagle, or snuggled someplace warm like a bear cub? Does she say funny things and have a lot of friends? Does she dance, sing, and paint? Is she free? We may never know, but I hope this is the case. I hope she finds relief in her slumber.
She might even feel guilty. Maybe she knows that we have to cancel plans when she has a hard day, or that we can’t go certain places with her. Or maybe she understands that her crying and screaming is frustrating to us. She may even realize that her sister desperately wants to play with her, but she can’t. And sometimes, she accidentally hits her brother and makes him cry; not because she is mean, or was even angry, but because she can’t control her arms.
I can see when she is relieved. When she’s swinging at the park, she’s released from the strain of gravity. When she smiles softly in the bathtub, I can see her letting go. I’m not sure exactly why she loves the water so much, but I can make some guesses. It could be that her muscles are relaxed in the warmth; or that her body feels light. It seems she moves a little more freely in water, and perhaps she feels more in control in that environment. Maybe she is released of pressure and tension. Or maybe it’s the muffling of sound while her ears are under water. It could even be as simple as her liking how her hair feels when it’s submerged. Whatever the case, she loves it, and she’s alleviated by it.
I know she feels sad. I don’t always know why, but she will cry and whine when she is sad. I try to comfort her, and sometimes I fail at the task. Sometimes she is beyond comforting. I cannot address the root of her sadness, because I don’t know where that root lies. So I hold her, kiss her, and rub her back. I only hope that I am enough to help her through the rough times.
But, oh! When she is happy, it is pure joy! Unadulterated, unsuppressed, complete and utter JOY. She laughs from her belly, and sometimes she’ can’t stop. We cannot help but laugh with her. We don’t always know why she’s laughing, but we go along with it. And when she looks–really looks–into our eyes, her bright blue ones shining back at us, we can see the happiness only she can possess. That delight that belongs only to those who are innocent. Her joy is contagious. It’s a shining star in the darkness. A glimmering jewel among jagged rocks.
She works hard, and we press her to keep working hard. And that joy is what keeps us going. It’s what gives us hope and the drive to persevere. It’s why we haven’t given up.
I know this post was full of a lot of downers and negativity. But sometimes we need to recognize and acknowledge the struggles so we can appreciate the victories. Sometimes we need to be in the dark so that the light shines brighter.