I love your brain

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?

My husband is traveling. He’s leaving Cole and I to our own devices for nine days. It’s rare that we two have a weekend on our own. The business travel is usually relegated to just weekdays but this is a long trip so we Cole and I have two full days to cause trouble together.

I’ve worked an adult night out into Friday, much to his delight. His school has an annual Casino Night event and sponsor a big group kid watching in the school auditorium whilst the parents gamble, wine taste and peruse the silent auction goodies at a nearby country club. For some reason I’ve gone by myself for several years now. It always seems to hit when my husband’s traveling. It’s a fun excuse to get dolled up and visit with friends. Fortunately Cole loves the group kid watching scenario so it’s win-win for us. By Friday we’ll be in need of a little break from each other and then we have the whole weekend to play.

He’s already contemplating a list of things he would like to include in the weekend…I’m sure it will change by Saturday morning but as of now he wants to:

• Do some cooking
• Invite Grandma over for lunch or dinner (to indulge in the aforementioned cooking)
• Go to the movies
• Make art
• See friends
• Decorate the porch for Halloween
• Take Luna for walks
• Go to the Farmer’s Market
• Watch a lot of TV (hopefully we’ll avoid this one by checking off all of the other items)

I find his list pretty satisfying. There are a few things I’d like to do as well so we’ll see how they all meld. I love having our special time together, just the two of us. In the chaos of the work/school week, it’s nice to be able to share a weekend with him where we don’t have to do anything, but have the luxury of doing everything.

Cole really enjoys music. Perhaps better said, Cole really enjoys music when it’s the music he enjoys. This can change on any given day, and when he’s in need of comfort, it reverts to the treasures of his toddler years like Laurie Berkner, Ralph’s World, and god forbid, Songs from the Street (the Street being Sesame). As soon as the weather cools slightly, the favored music becomes holiday music. It can be months of non-stop holiday tunes. There’s diversity in the holiday playlist, which now includes the awesome Bad Religion holiday album and Michael Buble’s too.

When driving alone with me he’s willing to experiment more with what he’ll listen to. He’s a fan of bands like Weezer, Green Day, One Republic, Foster the People, Coldplay, and They Might Be Giants. Keeping his more age appropriate likes in mind, I snap shots of my car radio display when driving so I can introduce him to new songs and artists on the weekends in hope of expanding our somewhat fixed (and often tedious) playlists. I thought I’d share the recent selection and turn it into my first ever recurring topic. Not all of the selections are hits but I’m honing my skills and more are hits than misses, especially if it’s just the two of us! For some reason he tortures his dad with only kiddie music and a strange unwillingness to bend.

If you have any recommendations…I welcome them! So here are the recent tries:

1. Benjamin Booker – Violent Shiver
2. George Ezra – Budapest
3. St. Paul & The Catholics – Call Me
4. Boy & Bear – Southern Sun (loves!)
5. Ben Folds – Song for the Dumped (listened to Ben for an hour!)
6. Nick Waterhouse – Say I Wanna Know (likes the whole album)
7. Andrew McMahon – Cecilla And The Satellite
8. Squeeze – Tempted
9. Lana Del Rey – Young & Beautiful (sometimes)
10. Joe Cuba – Bang Bang

Despite that fact that it’s 2014, and we’re no longer living in an era where we hide away children who have disabilities or challenges or are different, I was recently asked by a woman if I thought it was right for me to be taking my beautiful, smart, funny, wheelchair bound son out in public!

It still infuriates me despite having had some time to process it and to calm down. It also deeply saddens me that someone, anyone, takes this view. I try to wrap my head around her intention and while I suspect it comes from ignorance, it also came from a place where she (wrongly) thought she was initiating a protective skew on my exposing my son to scrutiny or judgment.

Part of me worries that there is a populous that will never be comfortable or accepting of people who are different. It’s hard to escape this reality. I’d be lying if I didn’t acknowledge that I see people secretly and not so secretly checking out my son. I see mothers shush their curious children and sweep them past us. When it’s convenient, I gently call them out, inviting the children to say HI or to ask questions.

I’m proud of my son. He’s an amazing kid who has faced challenges all of his life and still manages to lead what most would agree is a pretty normal life. He may do something in his own way, but it’s never stopped him from trying new things or pursuing interest. I want people to understand that just because some is different doesn’t mean that they’re not also very much the same.