I love your brain

More and more I realize all of the nuances about my son that I don’t know. While I feel like I know him well on the one hand, the fact of the matter is that I only know what I perceive I know. It sounds mysterious when presented as such but the truth is that so much of him is just that, a mystery.

Since he was little we accepted his smile as an affirmation of approval or delight, and then gone with those acceptances. We’ve assumed his preferences by this scale since he was tiny. He’s always been adamant with his dislikes and no’s. He learned to say the word NO early on. It’s a simple word that he became very consistent with, although frequently his choice of expressing displeasure or dislike is the glorious whine. It’s the most effective and garners the most immediate reaction because “no one likes a whiner”.

Though lately I’ve been wondering if our interpretations are often too general. Because he whines in a store, we generally leave. Because he whines at a song, we switch to a different song. But are we interpreting the whine correctly? I’d say half the time we are probably correct. We do know him fairly well but other times like when he’s antsy at an event or waiting around or in an unfamiliar setting, the factors that are causing his behavior are so vast, and our solution is to often remove him from it when perhaps it’s just that he’s cold, or next to something that smells bad, or needs a jacket, or wants to move closer to the cute dog or girl, or just wants us to pay attention to him for a minute. But how do you know?

The layers of his personality seem so untouchable. I feel like we only touch the surface of what he things, feels, and wants. We manage his immediate and primary needs. We try our hardest to understand the depths of his being but at the end of the day, he’s an enigma.

It’s a strange understanding to love someone and to be fully devoted to making his every moment rich and fulfilled and to know that you may not ever be entirely successful in doing so, no matter how hard you try. It makes me wonder how much of his acceptance of things, and his willingness to go along with choices we make on his behalf is him showing us the same love and devotion and his understanding that sometimes we just don’t get it. We don’t always get him.

I hum…a lot. It’s actually a bit of a problem. There is always a song running through my head, sometimes even when I’m listening to an entirely different song. I hum to myself when I work, play, sleep and am occasionally caught humming when I eat. I don’t even know I do it. Sometimes it escalates to quiet singing out loud, like when I’m grocery shopping or grooving around Target. Music just seems to run through me, always.

There are times I think I hear Cole hum too. It’s hard to know for sure but I sometimes hear what sounds like a tune coming from him. I asked him about songs getting stuck in his head recently. He says they do and that sometimes he can’t shake a song even when he’s supposed to be paying attention in class…

Here’s a sampling of the new music we tried recently:

1. Taylor Swift – Shake it Off (he loves)
2. Griswolds – Beware The Dog
3. The Pixies – Head On
4. Banks – Beggin for Thread
5. Postal Service – Such Great Heights
6. REM – Can’t Get There
7. Lorde – Yellow Flicker Beat
8. Mehgan Trainor – All About That Base
9. Hozier – From Eden
10. Manchester Orchestra – Every Stone

I love to dance. While I’ve taken the random dance classes here and there, most of my dancing days and nights are the kind of dancing you do at parties and night clubs, dancing with abandon for hours and hours. I used to dance in my room and around the house, and even made up dances to entertain my parents and their friends when I was little. Dancing makes me happy and brings me joy. I think it’s what kept me in relatively great shape when I was in my teens and twenties. If I could dance, I was happy.

I went to clubs most nights and danced. Usually as part of a pack, we’d descend the dance floor, mark our space, and dance. Together, alone, sometimes with strangers. It didn’t much matter as long as the music was good. Punk rock, glam rock, new wave…definitely a product of late ‘70’s and early ‘80’s! Late I learned some salsa dancing and took a stab at swing and spent lots of nights at the King King where they had live ska and big band music, dancing.

I find now that I imagine dancing to songs when I drive and will even cop to doing some stationary dancing in my seat while driving…I find it hard to keep my body still when I hear music. I dance around the house with Cole or around Cole sometimes and when I’m alone I groove around the kitchen or bedroom while I’m getting dressed or cleaning. I haven’t been club dancing in ages.

A group of us forty something moms did go to a trendy club a couple of years ago and were treated to a night of fun in the VIP room of the club where upon realizing that we were among the oldest people there, and that we were not there to meet boys, and that we didn’t so much care about what other people thought, danced and danced and danced until we were hot and a sweaty and utterly gleeful.

This morning left my heart in pieces…

Cole and I have had a week of togetherness, with a few more days to go, whilst my husband is traveling on business. While I know he misses his dad terribly, he also relishes the time alone with me. He enjoys knowing that I’m the one who is solely responsible for him, mostly because when we are a threesome, his dad does more of the heavy lifting because he handles the driving to and from school, homework, often dinner, before I get home from work.

With him away, much of that falls to me, though I am blessed to have someone who can do the driving since I work in the complete opposite direction of his school. Otherwise, homework, dinner, bath, and all of the in between is me, and he loves having me at his beckon call. If I am to be honest, I love having the special time with him too.

I stopped working when he was born so I could devote my time and efforts to caring for him. We did a lot of early intervention therapies and started a co-op infant/toddler program when he was just a year old. When he started pre-school, we continued with therapies in the afternoons and I chauffeured him to and from school and therapies. It wasn’t until he started elementary school that I felt I could return to work and for the first couple of years it was consulting work so I had time to be on campus, and still was the main chauffer and homework helper.

Had things been different, my plan had to return to my career a couple of months following his birth, however life had a different plan for our family. In retrospect, having had so much time with him and the opportunity to be a full time mother was something I’d never trade. So now that I’m working full time and not the primary parent during the week, I cherish our little pockets of “mom & Cole” time. Even today when my heart broke…

He stayed home sick yesterday…He’s been stuffy and running a slight fever on and off for over a week. Despite a pretty restful weekend, he woke early and was just not himself so we both stayed home. He rested and I nurtured. So this morning he woke, happy and seemingly content. I ran around getting his gear ready for school, showered and got myself ready for work, and when it came time to get him dressed, he burst into tears. Tears that continued through dressing, transferring to the wheelchair, rolling outside to greet his ride, rolling into the van, and apparently all the way to the freeway. I know he’s well enough for school. I know he had good sleep. I know he will have a good day once he settles into it.

But I also know that he cried because he just wanted to spend another day with me…

Every now and then I catch Cole looking at me most adoringly. It’s disarming and unexpected, but melts my heart when I catch him. He usually grins a little crooked grin and looks away when I do catch his eye. It’s the closest we really come to “I love you, Mom”. Once he uttered it in phrasing that was clear that it was what was he was saying, but otherwise, I’m bound to these little glances.

As much as I hate to admit it, sometimes it makes me really sad that he’s never going to really say he loves me, or throw his arms around me in big hug, or shower me with little kisses. All the little gestures of affection that most moms, parents, take for granted, are all unattainable in my world. They’re such simple, uncomplicated signs of love and ones that I adorn Cole with as frequently as possible. He’s definitely a child who knows he is well loved.

I am well loved by him too. It sounds so selfish to want him to kiss me or hug me, knowing those are things he can’t really do, and that he possibly feels frustrated that he can’t wrap his arms around my neck and whisper I love you, mom, to me. Or maybe just a little kiss…

Cole and I joined my husband’s company for a 5K this past weekend. The race benefited Homeboy Industries, a non-profit that began in Los Angeles, that successfully provides former gang members with education, counseling, training, opportunity and support. It’s a pretty remarkable organization. I’ve been to events where the “homeboys” and “homegirls” have shared their life stories and reform. They’re amazing people who inspire and serve as an example of what can happen when people take care to support and invest in each other.

We’ve done several 5K’s with Cole. It’s a great way to start a weekend and a pretty effortless way to support local non-profits. We’ve done a little volunteer work through the years as well and we feel it’s important for Cole to understand the value of helping others in whatever way we can. He helps pack up outgrown toys and clothes for donation each year. He understands that despite the challenges he faces in his life fortunate we are to have good health, family and friends who we love and who love us, a roof over our heads and food in our bellies.

It would be easy to let him off the hook on charity but it’s important that we all recognize that we can contribute to bettering the world in small ways as well as with grand gesture.

A running theme in my life is a lack of sleep. It’s expected when you have children but at a point everyone starts to sleep again. I’m thirteen years in and I still don’t get a solid night of sleep. I average maybe four straight hours, and then the rest of the night/early morning is spent waking and dozing in few minute segments, which is utterly unsatisfying. There are times when the average consecutive sleep is a mere two hours. Those days are unbearable, but more frequent than I like to admit.

The restless sleep is the doing of my son. He too sleeps well for a period of time but then routinely will wake a certain times and have difficulty falling back asleep. I spend countless times readjusting his small frame in the bed or curling up around him, spooning which helps sometimes. He will often drift back to sleep for bits of times but I’ve been up and moving which makes it harder for me to fall back asleep, and often when I finally do, he wakes up again. It’s an endless cycle that’s been going on for years.

I see the effect of our unstable sleep on both myself and on Cole. I worry about the long terms effects of poor sleep. I find myself dreaming about spending nights alone in a hotel room and just sleeping as if two solid days of sleep can remedy my weary body and brain.

We’ve tried all different ways to extend his sleep. Everything from melatonin to creating a bedtime routine to, yes, I admit in desperation, dosing him with Benadryl. Nothing works. The difficulty is that he falls asleep fairly easily and sleeps soundly for the first hours, but that’s not enough sleep for a growing child. I know it’s typical for kids with neurological issues to have sleep issues as well but I feel like there has to be a way to help him sleep better and for longer periods of time. Which, selfishly, would make my life much sweeter…

A girl can dream, right?