DO YOU HEAR ME?
January 8, 2015

Listening is a great skill. It doesn’t come easy for many of us, and I’ve learned that I struggle with being an engaged listener. It’s not that I’m not interested to hear what someone has to say, but more that I spent many years living with just my own voice, and inside of my head, for much of the day and I still find myself getting caught up in the thoughts that accompany listening or in interrupting because of the excitement of conversation. It’s been years since I was a stay home mom, but it’s something I still struggle with.

I stayed home with Cole for the first seven or eight years of his life before getting back into the work force. Having a non-verbal child, and being around the silence, made me a very chatty mom. I talked to Cole constantly and responded in kind. The difficulty of that is that the reciprocal aspect of conversation disappeared from my daytime life. It’s hard to listen when you’re playing both roles. At least, for me it was.

I have trouble with interrupting as I’ve mentioned. I really do work on it but sometimes I catch myself talking over a friend or colleague and it’s too late to pull back. I end up feeling terrible and then sort of withdraw from the conversation as much as possible to prevent it from happening.

On the flip side, I likewise feel terrible when I feel like I’m not heard. It seems to come with the territory of marriage. I’m guilty of it as much as my husband is. Sometimes a person just isn’t up for listening. Sometimes it just takes too much effort but instead of kindly bowing out of a conversation or expressing the need for some solace or silence, we just pretend we’re listening, while actually tuning out. It’s not the kinder choice but in a strange way it seems like the more polite choice, even though it’s not.

With this is in mind, I intend to continue to make every effort to try to be a more active, attentive, and respectful listener, as well as to find better ways to better communicate when I know I’m not up for good listening. I think it’s okay to take a little time inside your head now and then. Sometimes listening to yourself is just as important.

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I READ A LOT
January 7, 2015

I love to read. I try to read every night even if it’s just a page or two, though more often than not I get lost in whatever book I’m reading and waking up in the middle of the night, having rolled over onto my tablet or book. I favor mysteries, especially international crime thrillers, but I like to mix it up with novels and short stories, and the occasional bit of non-fiction.

As I’ve written previously, my dad kept journals of his readings. I have one of his handwritten little notebooks detailing the readings of 1968. It’s something I treasure. I often think about doing the same thing but then I move on to the next book without recording anything about the last. Perhaps this year I’ll attempt to document my reading. It would be fun to look back at the list several years later and be reminded of where I got lost in 2015.

I’m currently reading The Paying Guests by Sarah Waters. It’s set in 1922 in England, post WWI. A formerly privileged widow and her unmarried twenty something daughter, finding themselves without means, have to take in tenants to keep their home. The tenants, a young married couple, change their lives, especially that of Frances, the daughter, in compelling ways. I’m only half way through and am enjoying it. I am, of course, looking for the thriller element, even where it doesn’t exist.

I have a tendency to build upon my readings in my head whilst reading. I imagine where the story might be heading and sometimes I’m right. Sometimes I’m not. I have a tendency to devour series and as I grow more familiar with both the author and the main characters, I can often take the journey one step ahead of the book. It doesn’t spoil it for me. It actually makes me feel more a part of the investigation or story.

I love to read with Cole too. I’m not great at voices but I sometimes try to give accents to characters or different intonations or inflections. He’s forgiving and when we find a book he likes, he’s a great partner and listener. I wish he could find it in himself to get lost in books the way I did when I was young. He’s got limited options for independent time, in the house, or in his room and reading would be my first choice for him. He can listen to books on Audible, or read on his tablet, using his eyes to turn pages, but he’s not embraced the escape of a good book. It’s my dream that he will one day understand the magic of a well told story.

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I AM THE DJ (Series – 6)
January 6, 2015

We made it through the past few weeks of holiday listening to nothing but holiday music. Thankfully Spotify has some fun, and very comprehensive playlists already! The Ultimate Holiday Playlist was great, and there were lots of fun versions on the Indie Holiday Playlist.

But this past weekend, I was cooked. I don’t think I could handle another fa la la, or white Christmas. Since Michael Buble was a favorite Christmas album, I decided to try some of his non-holiday music. I’ve never really listened to him save for the Christmas album, nor had Cole. I’m old enough now that I can admit without shame that the songs we listened to weren’t bad. We both kind of liked them.

We also spent days listening to the Annie soundtrack after seeing the movie with some friends over the weekend. Cole had been a fan of the Broadway soundtrack, and acted in the play himself so the music is all familiar to and favored by him. The movie version, of course, has some updated versions and some originals so it felt fresh to him. He did let me know that he thought his friend Sami was a much better Miss Hannigan than Cameron Diaz. He thinks she sings better too.

His dad took a stab at DJing too. He’s introduced Cole to the Dandy Warhols with some success. I’m not sure what they listened to on the way to and fro school yesterday but I’m hoping it wasn’t holiday music. Come this weekend, I’m banning it from any driving I do! I’ll have to think about some new music to introduce him to. While Annie is okay, I don’t think I can listen to it with any regularity. I fell asleep with Hard Knock Life running through my head on a loop…contemplating some serious headbanging to get it out!

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SUNDAY MORNING
January 4, 2015

The Sunday before the end of two weeks off work and school…There’s competing desires to indulge in utter laziness and to end the break feeling accomplished and productive.

Thus far, the laziness is winning out although we’re into the second load of laundry and the boy has had a mani-pedi to get ready to return to school well groomed. (it’s only just 10:00 am and we didn’t get out of bed until 8:30 so maybe we’re slowly moving towards productivity).

Today is intentionally plan-free. No one in the family seems to be excited about the prospect of returning to the work/school routine, although I suspect that a day or two into the routine, we’ll all be happier. Much as I love having time off and enjoy the time together, it can be challenging to find things to do that satisfy everyone, unless there is some travel involved, which unfortunately was not the case this holiday season.

There are lots of things to get organized for both the boy and myself. I’m preparing some healthy, easy snacks for the work week, have to pack up my new under the desk elliptical machine, along with some new note books – an effort to stay on top of everything – and making sure I have a plan of action for the day. Two weeks off means a lot of catch-up, even with most of my industry being off too.

We also need to get the boy organized for the return to school. That means sorting through the backpack and binder and making sure everything’s current and any outstanding assignments are complete, packing up supplies for the week, and resetting the general mindset from vacation to school. That’s the trickiest part. The school year has been a bit rough so he’s no longer excited and eager to return to school – a first for him. Until this year, he truly wished he could live at school. He loved it that much.

More laundry, quick errands run, and we’re once again back home and trying to motivate to get the random things handled. Why is it that after having two weeks of holiday, this final day is the day when everything seems hard to do? It’s that dragging one’s feet thing, hoping to eek every last second of holiday out of the day. We can’t even motivate to take down the Christmas stuff. That will wait until next Sunday…

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WHEN YOU’RE NEAR ME I HAVE DIFFICULTY
January 3, 2015

Cole is prone to startle triggered seizures, which had him on preventative mediation nearly from birth. There were a few childhood years where he was weaned off the phenobarbital and medication free but a few years ago he had a new kind of seizure that had him still seizing when the paramedics arrived about six minutes after our call to 911. We’d never seen him seize like this and fear got the better of us.

His neurologist put him on a new medication, Levatrice, which seemed to help prevent the seizures entirely, for a while. It seems with the onset of puberty, and the hormonal changes that come with it, as well as general growth, the seizures are back as a regular thing. The school bell, our dog barking, and, more frequently than I like, my voice, when loud, calling from another room are regular triggers for the startle seizures.

Though recently, the seizures seem to have changed somewhat, evolved. The usual manifestation of his seizures involves his body freezing, seizing, with his arms a bit twisted and his face frozen in what looks like terror, and then it’s over. Now once that phase passes, there is an addition of fluttering eyes and mouth for an extended period of a minute more.

The seizures frighten me. I know that they are largely harmless, and that he has little awareness of them occurring, although he does show signs of acknowledgment before they happen sometimes. However, I also know that there have been instances when seizures have been fatal to teens with cerebral palsy. When Cole has a bad seizure, his face goes pale and cold within seconds of its onset. It scares me but I can’t let on him to that anything’s off. I usually try to maintain continuity in whatever was happening before the seizure so when he comes out of it, he’s just where he left off.

We’re again at the point where I think we need to strategize with his neurologist to see if there’s a different medication that can help quell the seizures. I think he’s at the highest end of the recommended dosages for this medication. He’s perhaps outgrown it. I’ve hoped he’d outgrow the seizures entirely, but it seems like he’s instead growing more into them.

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NEW YEAR’S DAY
January 1, 2015

I welcome the new year whole heartedly. I often feel ambivalent about new years and the concentration of attention on resolutions and change. However, this year, I find myself embracing the opportunity to implement some changes, updates, and upgrades into my life.

2014 was a fairly good year. We did a little traveling – I finally saw the spectacular beauty of the Grand Canyon, spent a lot of quality time with friends and family, did a few impactful updates to the house that have made it a space where we enjoy our downtime, as well as entertaining friends and family, overall the work year was solid, and Cole has grown in ways that still surprise us – his new found desire to spend time alone in his room in typical teen fashion…wow!

With the advent of the new year, I have the urge to continue to become healthier. Thus far, that includes the purchase of an under the desk elliptical machine, as well as a standing desk so that my normally sedentary work day can become a more challenging to me physically.

I’m also keen to explore some new recipes to add grains and more fruits and veggies to my diet, and eliminate some of the processed products as well as sugar. Sugar seems to be the evil element as we age, not only internally, but it also ages our skin more rapidly. I still have weight to lose (managed to lose and keep off 23 pounds in 2014…hoping for more of the same in 2015), but overall wellness is my main reason for updating the meal plans. I can feel the difference in my body, well being and energy when I’m eating cleaner, and leaner. My immune system is stronger and my moods more stable.

Having a living, breathing backyard garden is something that will help with that. We built some raised beds last year but have yet to fill them with soil so we can start planting. 2015 promises to be the year of getting our gardening on. We’ve grown veggies in pots and various spaces in our yard over the years and have been inspired by our homegrown crops to create wonderful meals from our produce. To be able to have a seasonal selection of crops to be inspired by is a dream. And the idea of tending to and nurturing them strikes me as a wonderful way to relax and spend a little time outside (I’m in an office all days with minimal outside exposure during the week).

I’m also looking forward to experiencing Cole growing. He seems to be in a physical period of growth at the moment. The last couple of weeks of 2014 have had him sleeping a lot more than usual and also a bit grouchier. Both signs of physical growth. I’m interested to see how he expands on his independence and to see how his interests grow this year.

Of course there are countless other upgrades that I hope to make practice of – being better organized, being more thoughtful and kinder (especially to my husband who has the unfortunate brunt of my moods whether he deserves it or not – most often not), reading more, revitalizing my French (we intend to take Cole to Paris for his 8th grade graduation), writing more, being braver about putting myself out there (where exactly there is, I’m not sure, but I know I’m not there, yet)…

I am entering 2015 with optimism, hope and an overall sense that the year will be meaningful. To me, that includes some real change and overhaul.

I wish health, happiness, and hope to everyone in 2015. And a good dose of love. It makes everything feel that much more attainable. Happy New Year’s!

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MERRY CHRISTMAS EVERYBODY
December 24, 2014

For us, today is the day. It’s Cole’s favorite holiday of the year, perhaps his favorite day of the year. It’s also the most trying day because the anticipation of the evening (our Christmas Eve festivities begin at 5pm) has his every emotion heightened and his patience limited. Did I say limited? Non-existent would be more accurate.

Despite having celebrated Hanukkah with family, and his cousin’s birthday with family, as well as some other fetes, it’s all about tonight. Nothing compares to Christmas Eve at Uncle Dennis’.

I love that he finds it so joyful and that he loves it so much. I wish I could share just a speck of the delight he finds it with all of you. His happiness continues through into the New Year, which always makes the start of the year hopeful and bright.

With that in mind and heart, I wish all of you a bright, shiny New Year and much love during the holiday season.

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ALL I WANT FOR CHRISTMAS IS YOU
December 16, 2014

Selecting presents for my son is one of the most frustrating quandaries I face each birthday and holiday season. He’s never been very interested in toys, and even less so now that he’s officially a teenager. Electronics are tough because they need to motorically accessible to him and most are not. He’s happy enough with gift cards and the random clothes and accessories, but it never seems satisfying as the gift-giver.

I scour the internet and accessibility/special needs catalogs in hopes of finding the unique items that elude me in local shops and stores. Some things seem too therapeutic and others seem too young or not quite fitting of his age.

While he likes science, I’ve learned from experience that he’s less inclined to want to do science projects at home with his parents than he would be with friends or at school or camp. He likes music, but with nearly anything he wants to listen to available for free on Spotify, CD’s are kind of passé, and the same goes with the availability of most movies and television shows on Netflix, Amazon Prime, or iTunes.

I love the tangibility of an actual book, but for him electronic books and audio books are more readily accessible and manageable for him. He’s got more art supplies than he’ll ever need and his room is well appointed. Which leaves the question nagging evermore…What to get the boy for Christmas!?

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I AM THE DJ (Series – 5)
December 12, 2014

I think I’ve mentioned that Cole loves Christmas. Particularly, Cole loves Christmas Eve at my brother’s house. My brother and sister-in-law started what has become a family tradition celebration of Christmas Eve. My brother loves Christmas, a love inherited from our mom, and he set out to create a wonderful family night for his two girls and for all of the extended family. It’s truly a special night and I don’t think any of the kids (all now teenagers) would trade it for anything. Especially Cole.

The evening’s events unfold almost exactly the same year after year (running on more than ten years at this point), and any deviation would be noticed, and corrected, by all of the kids. It’s successfully a warm, festive, thoroughly enjoyable celebration each year, and the one day Cole looks forward to more than any other, even his birthday!

Besides his love of Christmas Eve, Cole’s other favorite wintertime passion is holiday music. He’ll take it anyway he can. He’s even sat through Americana Christmas, listening to the likes of John Prine and Emmylou Harris (both talents but not generally in his wheelhouse of musical interest. Here are few things we’ve had on playlists this week:

1. Weezer – Oh Come All Ye Faithful
2. Bad Religion – Little Drummer Boy (Really, any of their holiday songs are great!)
3. REM – Deck The Halls
4. The Eels – Christmas Is Going To The Dogs
5. Pink Martini – Santa Baby (One of my favorites – especially Eartha Kitt’s version)
6. Smashing Pumpkins – Christmastime
7. Fitz & The Tantrums – Santa Stole My Lady
8. Dean Martin – Let It Snow
9. Ray Charles – Rudolph The Red Nose Reindeer
10. Oasis – Merry Christmas Everybody

One on going, pretty much love from start to finish is last year’s Michael Buble Christmas album. That, and Bad Religion’s holiday album, also released last year. Both are pretty great!

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I’LL STAND BY YOU
December 11, 2014

Cole’s having his biennial colonoscopy, upper and lower, on Monday. Besides his diagnosis of cerebral palsy, he has Crohn’s Disease. He was diagnosed when he was about three years old after a bout of a bad breath eventually led us to our GI for testing. Crohn’s is an autoimmune disease that effects the intestinal tract, and also greatly increases the risk of developing colon cancer.

Cole’s been fortunate in that he’s fairly asymptomatic (Crohn’s can be debilitatingly painful), and so far he’s got a healthy gut…no polyps. However, he does have to have regular colonoscopies and endoscopies. They view things from both ends.

I know the two procedures are fairly risk free (and having recently turned 50 am due for my first), but I tend to get nervous whenever he’s under anesthesia. It just makes me uneasy until I can go back and sit with him in recovery while he comes out of the purple haze. He’s a bit like Alex the Lion in the first Madagascar movie when he’s shot with a tranquilizer…groggy, and hallucinating, and then passed out again…rising slightly and then out again…Sammy Davis Jr. singing the Candy Man.

Cole is also prone to seizures, which doesn’t necessarily mean anything when it comes to going under. Only a small percentage of kids have seizures while under, and it’s generally harmless. For me, it’s just one other factor that makes me feel uneasy about him going under.

He handles all of this in stride. He’s always been pretty chill about having to have surgery or procedures or blood drawn or whatever. It’s simply part of the life he knows.

I try to take example from his calm and generally do a good job of keeping my unrest to myself. I’d never want him to know I feel anxious about anything he’s going through. I want him to feel like he can look to me for support and strength. Because that’s what moms (and dads) do. We stand by our kids…

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