CRUEL TO BE KIND
January 11, 2016

I had a bit of a revelation this past weekend. Perhaps somewhat overdue revelation but I had it (finally) and it’s put me to shame.

A discussion about something Cole related with my husband turned, as it often does, into an argument. I took my frustration out on him and got nasty. It’s my M.O. – not one I’m proud of but it happens a lot when we get into these emotional conversations. I think a lot of people do the same, and it is a learned style of fight that got passed on to my by my mom and brother. Hurt the ones you love.

The revelation I came to, is that my frustration when discussing difficult things in my life, is that we’re discussing difficult things in both of our lives. Shared frustrations, concerns, fears, anxiety, and stresses. When I talked to friends about these things, I have an outside opinion to bounce things off and to bring in different views. When I discuss things with my husband, the frustration is that we’re both in a similar place and it doesn’t help to remove me from where I’m stuck.

I’m not sure if I’m expressing that properly but in my head it makes sense and it struck me that it’s the root of some of the anger I direct at him. He can help me resolve some things because he’s looking for the same resolution, and I can’t necessarily help him. Sometimes you need a trusted or knowledgeable outsider to provide perspective and insight.

While I know that my fighting style is cruel, and not appropriate, especially when aimed at my partner, someone I love, this recognition I had gave me cause to reflect on my misguided anger in a way that I haven’t before. It gave me a deeper awareness of my failing. When I’m hurt, worried, concerned, or even appropriately angry, it’s not useful or helpful to deflect it upon someone else, especially someone who is often sharing the same emotions and therefore doesn’t need the additional burden of my wrath.

We’re going to fight still, everyone does, but I’m really going to make a bigger effort to stop to better understand the whole of a situation and what might really help to resolve it before I lash out.

Maturing can be a real bitch sometimes, especially when the mirror reflection is of someone were not proud to see…

GIRL AFRAID
January 5, 2016

The New Year always brings thoughts of improvement, change, and resolve. It always seems like the time to devote oneself to overhauling ourselves, our finances, our jobs, our lives, and despite my reeling against making resolutions, I do find myself in that same contemplative mindset.

The big ah ha for me is that I am my own worst enemy. I seem to get in the way of my own success or interest far more often than I don’t. A big part of my problem is that I have become a creature of comfort. Where I once barreled into things head on, I now research, create excuses, and find myself sitting resolutely where I am comfortable.

Comfort however should not be construed as content or satisfied. It’s simply a place where I know what is expected, or how to do maneuver, or how to behave. Some of this comes naturally with age and some of it comes from trying to maintain some sort of control in a life where I often have very little and some of it comes from fear.

Fear can be debilitating. I don’t think I’m that extreme but I do have a level of fear of the unknown that frequently keeps me from reaching a perceived goal or intention, or from trying new things.

I really started thinking quite a lot about this as we began contemplating our annual family trip to Mammoth so Cole and Dan can ski. We’ve been doing this for several years now with three or four other families in tow.   I learned to ski when I was nine and skied often until I was in my early 20’s. I was actually pretty good and really loved the sport.

I haven’t skied on any of the recent trips. The first year my excuse was that I needed to be available for Cole, who skis with an amazing adaptive program, Eastern Sierra Disabled Sports, in case he wanted to stop or needed anything. The next year, I got it in my head that I would fall and hurt myself and it was all over.

This year, I’m skiing. So what if I fall. I’ve fallen lots of times in the past and I know how to fall and to get up. I’m not that fragile and I want to have fun skiing with my husband and friends.

I do the same sort of thing to myself concerning my weight. I know how to be the fat girl. I know how to be the curvy one. I know how to handle myself with extra padding. When I start to lose weight and am working towards becoming fitter, stronger, and yes, thinner, I sabotage myself. The minute it becomes noticeable, I feel less confident with the attention and begin the slow decline of success. I’m not good at envisioning myself at my goal where I will likely be less comfortable, even if I’m healthier and smaller.

This past year or more I’ve actually managed to keep weight off despite my best efforts to thwart myself.   I’m intending to rejuvenate the efforts to improve my health and to lose weight, to lose baggage. The reality is that there is more to fear in staying where I am, as I am, in terms of longevity. It’s time to learn how to deal with my own discomfort and my own pathos so that I can become a support to myself, not a hindrance.

I’ll save some of the other fears for another time. I know I’m not alone in this pathos and I know it’s a challenge to get out of my own way, but I face challenges all of the time as Cole’s mom and I don’t view them the same way I view my own. I would move heaven and earth to make every day of his life better, easier, more fulfilled. I just need to try to give myself the same care and attention. The better off I am, the better able I am to rise to his needs.

Here’s to a New Year! One filled with first steps, second steps, and new steps.

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

RAININ’ IN MY HEART
February 18, 2015

The past few days kind of took the wind out of my sails.

We were scheduled to have a neurology appointment last Friday, which was confirmed by robocall from CHLA on Wednesday. We arrived on time, checked in, sat for a while, and then Cole was called for the usual weigh in, temperature, blood pressure intake and we were then led into an exam room. We again sat for a bit until someone came in to inform us that our doctor doesn’t work on Fridays anymore. She changed her day. They had left a message at our home mid-Friday morning. Not particularly useful since my husband and I both work, and neither one of us checks the home messages until we arrive back at home at the end of a weekday. Why do all of the forms ask for alternative phone numbers if they don’t use them? Mind blowing…

So they kindly gave us the first open appointment, Tuesday, her new day, at 12:15. We accepted the appointment. Sadly, having missed half of a day at work Friday, I couldn’t attend this time. We also had a morning orthopedist appointment, which I did attend. So no school or work for the boys. Frustrating but both necessary appointments.

The orthopedist appointment left us with hip repair/replacement surgery on the books for June, along with some other smaller surgical procedures that will leave Cole stronger and better able to bear weight, walk and sit more comfortably. This endgame the most important thing to remember during the six or so weeks of full leg casts with a bar between the ankles during the summer. This will be the second “bummer summer” Cole’s had in four years. He had similar surgery the summer before 4th grade.

Oh how I wish I could spare him the surgery and recovery. The first couple of weeks are the worse in terms of managing pain and finding the best ways to maneuver the boy with his casts and bar around the house and keeping him comfortable. Then the boredom starts to set in. Once he’s feeling better and off pain meds, the trick then becomes to find ways to keep a sedentary him entertained.

The neurology appointment happened, and despite videoing some of his seizure activity, it turns out that there’s not much that can be done. We can change medication to something that has more significant side effects, including potential liver and pancreas damage (so regular blood work) or contemplate an implant device that can be effective at calming seizure activity, but takes up to two years to get there, or leave him on his current medication. Given the now upcoming surgery, my vote goes to status quo. It doesn’t sound like the other options are better at the moment so my instinct is to wait until the orthopedic event is over and then get more into the brain activity.

Can someone just tell me when enough is enough for this boy? He’s been through so much, and takes it all in stride. It would be nice if something just went easily for him sometimes.

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…

TEENAGE DREAM
November 18, 2014

I’m feeling a rush of sadness of late.

Having spent quite a bit of time with Cole on my own these past weeks, I’ve had the pleasure of his company during all of my free hours. He seemed fairly content to just hang out with me during this time, and there weren’t many opportunities to plan outings or get-togethers with friends. We weekend lunched with Grandma, and did some running around town with her as well, but otherwise, it was just the two of us.

Many of his dearest friends are involved in sports. The girls have all discovered volleyball and play both on the school team and have just started league play, which will greatly reduce their weekend free time. The boys are doing soccer and wheelchair basketball. Cole’s opted out of baseball this season so he’s got more free time than usual.

I fear that the dreaded moving on is also occurring. While I know he’s loved dearly by his friends I worry that the day will come when he’s not keeping up as well, or where they’re moving on too fast. Despite caring about him, the girls will start doing independent group outings with other boys…and the boys will start doing the same. His independence will always be reliant on a caregiver or parent or older “friend”. Not exactly the ideal baggage for him to carry on group outings or dates.

I know I’m getting ahead of myself and of him but sometimes things like this get stuck in my head and I need to sort them out for the moment. Advance prep for when the situations actually arise? I just want his future to be rich and full. Teenage years are hard enough when you’re typical, but when you feel typical on the inside and your body somewhat fails you, teenage years seem daunting.

I don’t want him to have to spend his weekends with me, or with my husband and I. I want him to experience the rises and falls of teenage life as much as he can. I want him to fall in love and more than anything I want him to be loved.

JUST A GIRL
November 13, 2014

I just finished reading Caitlin Moran’s novel How To Build A Girl, which I loved! Johanna, her lead protagonist felt so familiar to me despite being of a slightly different generation and locale. The novel chronicled Johanna’s creation of her alter ego, Dolly Wilde, teenage music critic, who exploded on the scene in a grand way, allowing Johanna to experience her first kiss, drink, smoke, concert, and many other firsts. Dolly brought out the best and worst of Johanna, but all informing the young woman she will eventually become.

Teenage girls often find themselves categorized and shelved depending upon their appearance, smarts, interests, athleticism, and finally, their willingness to experiment with boys, drink and drugs. Subcategories exist within the groupings but overall, there are the usual sterotypes, the popular girls, the nice girls, the drill team, the drama girls, the girls who play.

As I’ve aged, the sad thing I’ve come to realize is that it’s not just others (parents, teachers, adults, boys) who determine the status of girls, it’s other girls. We allow ourselves to be defined by outside influences rather than us defining ourselves, and others accepting our designations. For better or worse, more often than not, it’s the pressures other girls put on us that become pivotal reflections of who we are and who we become.

Like Johanna, I felt the pressures of being kind of middle of the pack. I was kind of cute, not model thin, smart enough, nice enough, and above all, super insecure as a teenager. I never saw myself as the chosen girl or the girl who gets chosen. I learned that kissing boys opened doors, many that I wish I hadn’t walked through, but that did ultimately help shape the adult I became.

I learned that pursuing some of my interests, like punk rock music, both gave me refuge and cast me as a bit of an outcast at the same time. I wasn’t extreme enough in any one pursuit. I learned that a couple of drinks (yes, I admit to underage drinking) eased the discomfort at parties and made me an uninhibited dancer at clubs. I often found myself in the role of wing girl, which gave me great insight into the games we play. All of this informed the woman I became.

I’m still not the prettiest, smartest, nicest, most interesting of all of the people I know but I am comfortably me. A “me” I accept and generally approve of. I’m kind, compassionate, curious, caring and loving. I’m a good mother, wife, employee, and friend. I strive to be the best me I can be without sacrificing the things that make me special. The scars, visible and not, that I carry from my evolution are there and I wouldn’t be me without them. I treasure the experiences that created me.