Archive for the ‘Optimism’ Category

LOVE AND HAPPINESS
November 9, 2015

I attended a party this past Friday that is hosted by a couple of companies that I do work with.  I didn’t really know that many people in attendance, which is partially why I actually dragged myself to the event in the first place.  More often than not, I can be shy and I have hard time motivating to be bubbly and open.  Not always, and funnily, those who know me might find that a bit surprising.

In any case, I went and I spent a couple of hours enjoying the Santa Monica Pier after dark with nothing but lawyers and bankers, meeting people I’ve been talking to on the phone or communicating with vie email for years.  It was pleasant and really nice to have faces to the names now.  I had lots of enjoyable conversations and feel like it was definitely the right decision to attend.

I had one conversation with someone I consider a friend.  I’ve known him for many many years, though I only see him once or twice a year.  We are Facebook friends so we keep abreast of the shared events in our lives through that, which is really one of the things I most enjoy about Facebook.

One thing he shared with me is that he truly enjoys following my Facebook posts because he believes that they bring joy to people.  I hadn’t really consider that and don’t know that I’d describe myself or my posts as such but I was really touched that it was what he takes away from my shares.  It got me thinking about the interpretation and intention.

i suppose in many ways I do try to find the joy in things, even in dark situations like Cole’s surgery and recovery.  Somewhere in the love and care there are such moments of glee and joy that perhaps that is my intention in the way I share things.  It’s the way I try to live my life as well.  It’s not perfect, and it’s never going to be perfect but that doesn’t mean that there’s not infinite possibilities for happiness and joy – for hope.

I also tend to feel like even though we struggle, and have tough times, and life’s not always easy for us, or for Cole, there are so many people in this world, in my community, who have it worse.  Much as I enjoy a good bitch fest and the occasionally wailing and moaning about something, I never take it that seriously because I do always believe that it will all work out in the end.  I have hope.  I have joy.  I have love.

SEE ME, FEEL ME
February 23, 2015

My husband tends to keep things close to the vest. He’s not as openly effusive as I am and he doesn’t readily share his thoughts about our family life, preferring to keep them private. We’re different that way. I think he internalizes things a bit too much, and he thinks I share too much – somewhere there’s a balance and it seems we both have different needs in terms of the kind of support we want from beyond our family of three. Strangely, despite the disparity in our coping, it works. We always have each other. In a rare share, he wrote the below piece for a fundraiser our school puts on each year. Sadly, he was in Wales visiting family so he missed the reading. Much of the audience was brought to tears and it was well read by one of other dads, who, besides being a talented orator, also completely related to the experience which brought a great deal of heart to his reading. I’m sharing with permission…

As written by my husband, and read by Benjamin Bratt at our annual CHIMEapalooza Event:

If you saw my family walking through a mall when my son was a baby, we looked just like any other family (my Hollywood good looks could be distracting, but otherwise we looked like your typical family.) We had the stroller and the packed diaper bag, but if you rifled through it you might see syringes and gravity bags for tube feedings next to the wipes and cloths.

As my son got older and outgrew the stroller, our outward profile changed, a bright orange wheelchair replaced the stroller, and friendly smiles were replaced with odd stares as we walked through the mall. It seems the general public is not accustomed to seeing children in wheelchairs out and about. Kids were generally curious and often asked questions, “What happened to him?”, “Why is in a wheelchair?”. To this my wife would smile at them, sharing “This is Cole. He’s four. How old are you?”, or explaining “Cole’s muscles work differently than yours and needs the wheelchair to help him get around.”, or “He understands everything that you are asking, so you can talk to him and you’ll see his answer with smiles.”. And on cue, Cole would flash is light-up-the-planet smile, and make a friend.

Yep, kids were a breeze. More often, adults would lock gaze on him and practically walk into a pole, mouth agape, like they couldn’t figure out how a kid in a wheelchair managed to find his way out of the house. For me, still wading through the newness of parenthood and the rawness of my own fears for Cole’s future, their judgmental stares caused me to try to protect my family by glaring back at them in my attempt to communicate to them that their stares hurt. They made us feel somehow less than, not welcome in public, and so much worse. I raged inside because I wanted to protect my boy from that feeling. It broke my heart to have people look at him like that with so much intensity, but actually not see him at all. Not see the bright, funny, beautiful, kind, open child that was sitting right in front of them.

Over time it just ground me down, having to summon that glare, giving so much power to the confused and small-minded reactions of passers by. Simultaneously Cole started the CHIME infant toddler, and then the lab pre-school, and finally CHIME Charter. We became part of welcoming community so much bigger than our little family, our tribe as my wife calls it. I learned over time that no matter what or particulars, we all face challenges and we all feel the weight of our hopes and dreams for our children. Most importantly, everyone has good days and bad days.

And something else changed. When I caught those stares, I started to forget to glare back and instead smiled. If they continued to stared at me like they couldn’t process what we are, I would smile just like my son taught me to. My smile is not as open as his, not as warm or as full of life, but I do my best. Plus, now I say hi to everyone I pass and I hope that my smile and my hello communicate at least a sliver of, “Hi. We like the mall, maybe more than we should and we are pretty happy to be here today. We may not be exactly like you, but we are not so different either. We hope you have a good day, and we hope that this is a good day for us too. Oh, and hopefully I’ll find a cool sweater – on sale!”

Dan
Father of Cole in 7th grade

DON’T STOP ME NOW
January 29, 2015

We had Cole’s IEP today. The IEP is our annual review of educational goals that we, together with Cole’s team (which includes speech therapist, occupational therapist, physical therapist, teachers and school administration), set each year. It’s a bit more involved than that but in general its purpose is to ensure that the necessary services are in place to help facilitate his access to the curriculum and support his needs. All in all today went well and the process was collaborative and informative, with what feel like achievable goals that all, in one way or another, tie to improving and expanding his communication skills, which we feel is vital to his success in school, and in life.

I left the IEP feeling positive and as I drove to work I continued to think about the morning. Despite the process and conclusion of the IEP being positive, it also strangely serves as a reality check. In order for it to be successful and appropriate, we have to accept that some goals from the previous year were not met and that even though we believe that Cole could have, should have achieved them, he did not. There are so many factors that play into his success. Some he can control and some that are out of his hands.

The effort that is required of him to construct even a small sentence or find specific fields in his Tobii (the eye gaze voice output device he uses to “talk”) is considerable and if he’s distracted by a friend or sound or himself, starting over makes the process that much harder and after time, that much less interesting to him.

Motivation seemed to be a running theme. Like most kids, when he has an interest or curiosity he can be quite adept at finding the word or words to communicate. When he’s relaxed and no one is paying too much attention to him, he can quickly find things on his Tobii, or can say actual words. There’s no stress or pressing need. However, when pushed to a task or asked to find specific words or phrases on Tobii, he seems to have trouble focusing, or worse, doesn’t always want to, and therefore does not try.

In addition to highlighting his strengths, the IEP shines light on his weaknesses and brings some of his limitations to the forefront. In our family, we tend to lead with hope. We have instilled the belief that he can do anything he wants to do as long as he tries, or as long as we can figure out a way that works for him. But sometimes we’re reminded that despite our best efforts, despite his best efforts, that may not always be his truth. It’s a hard thing to have to face and accept the realities of a life so young. It’s not always easy to recognize that as amazing as Cole is, there are going to be limits. Limits we intend to stretch and expand as much as possible to ensure that his life is rich and full, and that he’s the best Cole he can be, but limits nonetheless.

That’s when the tears flow…

MONDAY, MONDAY
January 5, 2015

General laziness won out yesterday…some things were handled, but quite enough to make today feel easy. Surprisingly, Cole got off to school without any fuss or drama. Hopefully it’s the start of a good day for him. I’m sure seeing all of his friends, even those he saw over the break, will be good for him as well as simply getting back to the structure of a school day. Besides exercising his brain with school work, the physical exercise will feel good for his body. He’s much more physically active at school where he walks in his gait trainer daily, as well as doing some standing, and P.E. class.

My intentions of getting out of the house early did not quite happen. It’s the first morning in the house that I’ve had to myself since the middle of December and I spent the morning finding little things to tend to. I am the queen of dawdle. I can putter around, not exactly wasting time, but definitely not doing what I’m supposed to be doing, all morning if left to my own devices. My hope for a dawdle free morning has already been thwarted. The dog needed brushing, the house needed a little picking up before the cleaners come later (yes, I’m one of those people who straightens up for the cleaners), and the cat needed a little focused attention.

It’s not that I’m dreading work. I actually like my job and I especially enjoy my coworkers. I just like time to myself more, and it’s a rarity in my life. I’ve got so much stuff to take with me to work today. Among them, the under the desk elliptical machine, some homemade chia water, my new tea infusing tea cup, some loose tea, and a few healthy snacks for the week. I’m prepared to have a great start to the year in terms of wellness.

I’ve also tucked my $1 away for the first week of the year savings. There’s a challenge going where each week you put away an amount equal to the corresponding week. This week 1, $1, next week 2, $2 (total saving $3), etc. By the end of year I’ll have $1,400 saved without ever really noticing.

I’m looking forward to coming home tonight to hear about my guys’ days. That’s one of the nice things about all having different days, sitting together at dinner sharing our experiences and laughing together. I guess I should get my day started so it can end…

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!