There's a week left to our summer, determined by the boy's return to school. This year he'll be starting middle school. It's hard to believe he's entering the 6th grade, and even harder to believe he'll be twelve years old soon. Sometimes the five weeks we spent in the NICU feel like they are a distant memory, and others I can smell the sterile, dry air, and hear the beeps and whooshes of the monitors and respirator struggling to keep the boy alive.
Middle school brings about lots of new changes. Switching classrooms, different teachers and support staff, and puberty. Fortunately, we are not moving campuses, just buildings. Our school goes from K-8th, so he'll remain in a familiar setting where he's happily been cast as one of the more well known kids on campus. He has friends and admirers from every grade. Nearly all of his culminating 5th grade class are returning for middle school so there will be only a small handful of brand new students among the 6th grade.
He's excited and feeling positive about going into middle school. I suspect there will be some anxiety that manifests itself with sleepless nights and moodiness. It happens every year. A symptom of his being non-verbal. He can't express any concerns, or joys about the upcoming experience and changes so it takes on physical manifestations. Despite his ability to communicate with his Dynavox, and other means, he seems incapable, or uninterested, in expressing stress or anxiety.
I look forward to seeing how he handles the more intense days, longer hours, and tougher school and home work. Each year takes more effort to maintain a level of consistency and to keep up with peers. He's got the capacity for greatness, but we haven't found the best ways for him to access technology or the right devices. More experimenting and hopefully we'll hit upon the right tools. I long to explore that beautiful brain of his!
Friday, August 9, 2013
Wednesday, January 11, 2012
New Year, New Words
It's the new year. 2012! Naturally, the notion of exercising my practice of writing is on the list of not exactly resolutions. It's more on the list of things that keep me sane, along with eating better, cleaner food, moving my body (alot) more, and choosing to be happier. Somewhere in that list falls getting more sleep. In fact it's at the top of my list, but it's one thing I have no control over. The boy controls my sleep routine and whether I get enough of it. Given the past couple of months, he's decided that a sleepless, addled brain is best for me. I vehemently disagree. I'd kill for a full eight hours of uninterrupted sleep. Generously, my brother gave my mom and I each a night away in Santa Barbara, giving me a ray of hope of an wine and ambien charged full night's sleep looming in my no so distant future.
In the time that has passed since my last post about the surgery, the boy has recovered, and is presently devoting hours a week to physical therapy. He's stronger than ever, and his steps are purposeful, straighter, with greater endurance. In short, the surgery was successful and the bummer summer, as we came to call the two months following the surgery where the boy layed about on beds with full leg casts and a broom handle between his ankles, was worth it. 4th grade started and continues to be challenging, interesting, and terrific. They're studying explorers now, which makes me want to make every outing an excursion! The boy, not so enthusiastic about it! Hopefully he'll come around.
The new year makes everything seem fresh for the first month or so and optimism piques until the newness wears off. Perhaps the better goal for this year, is to approach each month as new and to continue the verve I feel in early January?
In the time that has passed since my last post about the surgery, the boy has recovered, and is presently devoting hours a week to physical therapy. He's stronger than ever, and his steps are purposeful, straighter, with greater endurance. In short, the surgery was successful and the bummer summer, as we came to call the two months following the surgery where the boy layed about on beds with full leg casts and a broom handle between his ankles, was worth it. 4th grade started and continues to be challenging, interesting, and terrific. They're studying explorers now, which makes me want to make every outing an excursion! The boy, not so enthusiastic about it! Hopefully he'll come around.
The new year makes everything seem fresh for the first month or so and optimism piques until the newness wears off. Perhaps the better goal for this year, is to approach each month as new and to continue the verve I feel in early January?
Monday, July 18, 2011
Three Days and Counting
The surgery is in three days. We went through the full day of pre-op last week which was enlightening in some ways and terrifying in others. I don't think I've ever seen the boy's widen more than when the associate surgeon gleefully mentioned that death was a possbility with any surgery. Really? In front of a nine year old who is already scared enough? I understand that they are required to go through all of the possible outcomes, etc. but I am beyond surprised that they don't consider that children don't need to hear these things. We went through much of the procedure and discussed pain management, getting him home, and learned that we will have a PT help train us with moving and transfering him while in casts.
In an effort to pack in as much fun into the last days of the fun part of summer he roller skated on Friday afternoon, spent Saturday doing his favorite morning routine (Trader Joe's with Grandma and then takign Grandma out to lunch), and then we all went for a family swimming and bbq party with two of his best friends. Sunday he surfed! It was a beautiful morning at the beach and he had cheering from Grandma and Ronnie, and Chelsea & Will...(and mom & dad)...He was nervous about it at first, maybe because he hasn't surfed since last August, but he got some great rides and afterwards he seemed thrilled that he got to do it. Sometimes the boy doesn't realize he's had a lot of fun until well after the event? It's a funny phenomen about him but it happens quite a bit when he does something exciting...Disneyland (always more fun when he thinks about it afterwards), surfing, playing with dolphins...And the day ended with a major haircut (short and a little spikey!) and some relaxing time with mom and dad...We all had a little too much sun, but definitely a lot of fun.
Now I just wish it were already next Monday. The boy would be home and on the road to recovery...
In an effort to pack in as much fun into the last days of the fun part of summer he roller skated on Friday afternoon, spent Saturday doing his favorite morning routine (Trader Joe's with Grandma and then takign Grandma out to lunch), and then we all went for a family swimming and bbq party with two of his best friends. Sunday he surfed! It was a beautiful morning at the beach and he had cheering from Grandma and Ronnie, and Chelsea & Will...(and mom & dad)...He was nervous about it at first, maybe because he hasn't surfed since last August, but he got some great rides and afterwards he seemed thrilled that he got to do it. Sometimes the boy doesn't realize he's had a lot of fun until well after the event? It's a funny phenomen about him but it happens quite a bit when he does something exciting...Disneyland (always more fun when he thinks about it afterwards), surfing, playing with dolphins...And the day ended with a major haircut (short and a little spikey!) and some relaxing time with mom and dad...We all had a little too much sun, but definitely a lot of fun.
Now I just wish it were already next Monday. The boy would be home and on the road to recovery...
Monday, July 11, 2011
My boy...
The boy is scheduled to have surgery on his hips and leg muscles next week. Of course this has my mind swimming with a thousand what ifs and hows and everything in between. We've gone through the mini version of this surgery before. When he was five and half he had three sets of leg muscles released, or lengthened. They cut through the skin into the muscle to allow it to reset in a new longer, stretched fashion to faciliate more flexibility and ability in the legs. It worked, and it helped him for a time. But children have a funny thing they do, grow...and as he's grown, one of his hips has displaced, and the muscles have become tighter, partially the cause of the hip displacing. All par for the course when your darling boy has cerebral palsy. Small bumps in the road that hopefully lead to better things for the boy. Following a long surgery, he'll be in lower body casts for six weeks. Six long weeks. Six weeks of what I can only currently approach with dreaded uncertainty. How will we move him? (The casts are full leg and will most likely have a bar of some sort at the ankles setting his legs apart to some degree)...How will we keep him comfortable? Entertained? Painfree? How will we change him? How will we keep him sane and content? How will we manage to remain sane and content?
As the parent, you feel guilt, fear, anger, protective, sad, and did I mention, fear? It's hard to knowingly put your beloved child into a situation where you know they will be frightened, in pain, uncomfortable, distressed, and mad. Mad because of the emotional distress you are putting them through. Mad because of the horrible casts! Mad because of missing the end of summer school! Mad because of missing the end of Day of Play summer camp! Mad because he won't get to swim for a couple of months! Mad because he won't get to surf! Mad because we aren't doing our usual week at the beach house with Grandma and his cousins! Mad! Mad! Mad! And who can blame him?
Getting through the hospital phase is the worst part. Hospitals may be the best place to perform surgery but they are absolutely the worse place to heal. Even a day out, they're horrible. Especially if you have a child who is atypical. Especially if the surgery is fairly uncommon to most children (even if it's common to children who have CP). Especially if you believe the nurses and doctors are there to answer your questions and to help you navigate your newly casted child. Not going to happen. But when you get home, and you put all of those years of crazy, Maguyver-esque experiences you have had in adapting your life and home to your child's specific needs and preferences, the real healing can begin. It's just that you can't know what you need until you need it and you can't fully prepare for exactly how you'll navigate the lower body casts or how you'll make your child comfortable at night, and entertained and happy sitting around in giant casts for six long weeks while he's missing out on his summer fun.
And that's where I am right now. Wondering how to do it all. Tomorrow we have a pre-op appointment at the hospital which I will attend armed with a list of questions and concerns. Hopefully it will help me move closer to feeling like I can prepare for this. Nothing but seeing him post-surgery will prepare me for the surgery. I don't like the thought of him going under, and I don't like hospitals...I'll breathe when he wakes from the surgery and can rest his hand in mine. Until then, I'm just collecting information that will help me do whatever I have to do to make this all okay for him, because that's the only that matters. The boy...The boy I love beyond my imagination...
My boy.
As the parent, you feel guilt, fear, anger, protective, sad, and did I mention, fear? It's hard to knowingly put your beloved child into a situation where you know they will be frightened, in pain, uncomfortable, distressed, and mad. Mad because of the emotional distress you are putting them through. Mad because of the horrible casts! Mad because of missing the end of summer school! Mad because of missing the end of Day of Play summer camp! Mad because he won't get to swim for a couple of months! Mad because he won't get to surf! Mad because we aren't doing our usual week at the beach house with Grandma and his cousins! Mad! Mad! Mad! And who can blame him?
Getting through the hospital phase is the worst part. Hospitals may be the best place to perform surgery but they are absolutely the worse place to heal. Even a day out, they're horrible. Especially if you have a child who is atypical. Especially if the surgery is fairly uncommon to most children (even if it's common to children who have CP). Especially if you believe the nurses and doctors are there to answer your questions and to help you navigate your newly casted child. Not going to happen. But when you get home, and you put all of those years of crazy, Maguyver-esque experiences you have had in adapting your life and home to your child's specific needs and preferences, the real healing can begin. It's just that you can't know what you need until you need it and you can't fully prepare for exactly how you'll navigate the lower body casts or how you'll make your child comfortable at night, and entertained and happy sitting around in giant casts for six long weeks while he's missing out on his summer fun.
And that's where I am right now. Wondering how to do it all. Tomorrow we have a pre-op appointment at the hospital which I will attend armed with a list of questions and concerns. Hopefully it will help me move closer to feeling like I can prepare for this. Nothing but seeing him post-surgery will prepare me for the surgery. I don't like the thought of him going under, and I don't like hospitals...I'll breathe when he wakes from the surgery and can rest his hand in mine. Until then, I'm just collecting information that will help me do whatever I have to do to make this all okay for him, because that's the only that matters. The boy...The boy I love beyond my imagination...
My boy.
Tuesday, January 4, 2011
It's a new year...Whoo Hoo!
With the new year comes all of the promise of leaving all of the bullshit from the past year behind, bad habits turn good, and our interest in being the new improved new year (fill in blank...2011) version of ourselves is peaked. My old and new year however don't seem all that different. I've renewed my interest in myself by embarking on the old exercise, sleep, read, explore more routine, while also eating, gossiping, and wasting less plan...All destined to improve and better the old me. Will I succeed? I'd like to think so. My old age has made me more contemplative about all of the time, things, and energy I waste...I am quite talented at distracting myself from my goals and I'd like to believe that I can actually succeed with the newfound recognition of my talent exposed.
The physical improvement goals are greatly aided by looking at old and current pictures of myself. When did I become that overgrown woman? It took years of diligent practice but by comparison I find a determination to take the transformation a bit more seriously and to make quicker time of the loss. I don't expect to lose heaps of weight in days but I also don't want to spend twenty years taking off what it took twenty years to put on...While I don't watch The Biggest Loser, I know that these people lose massive amounts of weight in the span of a TV show...but I see it's also possible to do so in a real life, somewhat less intense manner and still have it be significant.
The social improvement goals are another story...sometimes it's a matter of just letting things go. So often I find myself almost chided into bad behavior or response and other times, I myself am guilty of knowingly pushing buttons. Either way, the question is "to what end?". It's not always, almost never, important to be right, to point out others flaws or shortcomings, to belittle, or to not listen. I'm guilty of all these behaviors, and I often feel guilty for it too. Why waste the energy on either? Sometimes just keeping your mouth shut is the simplest, kindest, best choice. I hope to make good choices in my dealings with others this year on...
So there you have it...my well planned steps towards a new improved 2011 version of the old damned 2010 version of myself...We'll see how she fares when we once again find ourselves ringing in a new year in just 361 days!...
The physical improvement goals are greatly aided by looking at old and current pictures of myself. When did I become that overgrown woman? It took years of diligent practice but by comparison I find a determination to take the transformation a bit more seriously and to make quicker time of the loss. I don't expect to lose heaps of weight in days but I also don't want to spend twenty years taking off what it took twenty years to put on...While I don't watch The Biggest Loser, I know that these people lose massive amounts of weight in the span of a TV show...but I see it's also possible to do so in a real life, somewhat less intense manner and still have it be significant.
The social improvement goals are another story...sometimes it's a matter of just letting things go. So often I find myself almost chided into bad behavior or response and other times, I myself am guilty of knowingly pushing buttons. Either way, the question is "to what end?". It's not always, almost never, important to be right, to point out others flaws or shortcomings, to belittle, or to not listen. I'm guilty of all these behaviors, and I often feel guilty for it too. Why waste the energy on either? Sometimes just keeping your mouth shut is the simplest, kindest, best choice. I hope to make good choices in my dealings with others this year on...
So there you have it...my well planned steps towards a new improved 2011 version of the old damned 2010 version of myself...We'll see how she fares when we once again find ourselves ringing in a new year in just 361 days!...
Thursday, August 12, 2010
Running through my head...
If you were to enter my mind and actually be able to read my thoughts, you'd run. Oh there would be nice thoughts, funny thoughts, sexy thoughts, and such, but there would also be a lot of darkness and sadness and reckless wondering, wandering through my brain.
Most mornings I take a back route to my office once I'm off the freeway. I almost always see a man sitting on a corner of the street in a power wheel chair seemingly watching the cars go past. He appears to have cerebral palsy, like Cole. It may be another diagnosis but the physical manifestations are the same. I see his twisted limbs and the slight hang of his head. Like my son. And depending on the day, and on the mood of the thoughts that race through my head, I cry, or I think he seems peaceful, content, to be sitting in the sunshine, part of the landscape. When I feel dark, I find myself delving into the unknown future of my son. It pains me to think that one day he would be this man, sitting watching the world go by. Not on my watch, I think.
My husband and I take great measures to make sure that Cole is very much a part of the world. That his life is full, his interests are pursued and his dreams made true. He may approach things in his own way, but damn it, if he wants to surf, he'll surf (thank you Jimmy Gamboa!). He is very much a part of our community, his community, and he lives a life most children would be happy to live. And I'm sure that the parents of this lone man I see did the same for him and I imagine wanted the same for him...and that's what throws me off. That's where I fall into the worse case thinking and I fear for Cole's future...It's a place I try to avoid, but sometimes the realities of what it can be stare me, smiling, in the face and I cry.
Most mornings I take a back route to my office once I'm off the freeway. I almost always see a man sitting on a corner of the street in a power wheel chair seemingly watching the cars go past. He appears to have cerebral palsy, like Cole. It may be another diagnosis but the physical manifestations are the same. I see his twisted limbs and the slight hang of his head. Like my son. And depending on the day, and on the mood of the thoughts that race through my head, I cry, or I think he seems peaceful, content, to be sitting in the sunshine, part of the landscape. When I feel dark, I find myself delving into the unknown future of my son. It pains me to think that one day he would be this man, sitting watching the world go by. Not on my watch, I think.
My husband and I take great measures to make sure that Cole is very much a part of the world. That his life is full, his interests are pursued and his dreams made true. He may approach things in his own way, but damn it, if he wants to surf, he'll surf (thank you Jimmy Gamboa!). He is very much a part of our community, his community, and he lives a life most children would be happy to live. And I'm sure that the parents of this lone man I see did the same for him and I imagine wanted the same for him...and that's what throws me off. That's where I fall into the worse case thinking and I fear for Cole's future...It's a place I try to avoid, but sometimes the realities of what it can be stare me, smiling, in the face and I cry.
Monday, June 28, 2010
The Drive
I live in Los Angeles...like many Los Angelenos, I drive. Alot! If I'm taking my son to and from school on a given day, and then myself to and from work, I am in the car for a minimum of three hours. Two if the school run is eliminated. It's a lot of time with nothing to do but sit...and listen...and talk...and think. And I do it all. Anytime the boy is a passenger, there is only children's music, or reggae (thank god for his love of the reggae or I'd be left with only endless repeats of Ralph's World, Laurie Berkner, and They Might Be Giants (the latter being somewhat tolerable if you don't have to do the same disc more than twice in a 24 hour period)...Without the boy, I do a little BBC World News in the morning because British news is so much more interesting than local LA news...A good dose of NPR keeps me in touch with happenings of the world, and my town, and then there's music...Today I blasted compilation discs of punk and new wave from the late 70's until my ears bled...It shakes out all of the angst and eradicates the day of work from my brain...I can sing my little heart out and bop in my seat as I creep along the 405...Or I'll call my mom. Somewhere during the drive I check in to see how she's doing. She just moved back to LA after twenty years in the civil little town of Grants Pass, OR. Twenty years was just enough time to erase any memories of life and living in LA for her. She's experiencing some culture shock now that she's left her little town. I'm glad she's here and she's slowly adjusting so I take advantage of my hours in the car to check in with her so that I can devote my home time to the boy and the man...
The funny thing about the whole drive thing is that I hate driving, and I drive more than anyone I know! Thank god for diversions...like great music, compelling news, and my over active imagination...
The funny thing about the whole drive thing is that I hate driving, and I drive more than anyone I know! Thank god for diversions...like great music, compelling news, and my over active imagination...
Thursday, June 17, 2010
Good Girl
My son, who as you know is a boy of few words, said "Good Girl" to my husband today when told that mom was making a salad to take to work for lunch. When asked if he meant because mom was taking a healthy lunch, he shook his head. When asked if it was because mom is supposed to cook (or prepare the food), he vehemently smiled YES! My husband naturally laughed heartily and quickly shared the conversation with me. I too laughed, more because I was proud that Cole had eeked out a couple of words, but also because he had a funny opinion of our respective roles.
I'm not sure where it comes from though. We are a fairly liberal family. I don't think we adhere to traditional designations of what a wife/mother or husband/father should be. We each have our strengths and tend to pitch in wherever and whenever needed. We both work. We both cook. We both care for Cole. We are both involved at his school, in fact, my husband even more so than I. We both give baths, do homework, play games, do playdates. Yet, for some reason there are things that the boy prefers to have one or the other of us to manage. He actually likes me to bathe him, but prefers his dad to do the drying. I have to put him to sleep...but dad gets him ready for bed. And apparently, I'm supposed to do the cooking.
Does he think I'm a better cook, or that it's my role to cook? And where does this opinion come from? He doesn't eat much (he's fed through a g-tube) so I don't think he knows per se that I am a good cook (I am!). which leads me to believe that he simply thinks the moms should do the cooking. Is this supported by things he sees or hears at school, in books, on TV? My curiosity lies more in how his brain works than in the notion of roles, but I am curious nonetheless. In the meantime, I am happy to be labeled the Good Girl...I wish our lunatic puppy felt the same!
I'm not sure where it comes from though. We are a fairly liberal family. I don't think we adhere to traditional designations of what a wife/mother or husband/father should be. We each have our strengths and tend to pitch in wherever and whenever needed. We both work. We both cook. We both care for Cole. We are both involved at his school, in fact, my husband even more so than I. We both give baths, do homework, play games, do playdates. Yet, for some reason there are things that the boy prefers to have one or the other of us to manage. He actually likes me to bathe him, but prefers his dad to do the drying. I have to put him to sleep...but dad gets him ready for bed. And apparently, I'm supposed to do the cooking.
Does he think I'm a better cook, or that it's my role to cook? And where does this opinion come from? He doesn't eat much (he's fed through a g-tube) so I don't think he knows per se that I am a good cook (I am!). which leads me to believe that he simply thinks the moms should do the cooking. Is this supported by things he sees or hears at school, in books, on TV? My curiosity lies more in how his brain works than in the notion of roles, but I am curious nonetheless. In the meantime, I am happy to be labeled the Good Girl...I wish our lunatic puppy felt the same!
Tuesday, June 15, 2010
Sunshine and Summer
As summer descends and our days grow longer, warmer, and brighter, I notice that my mind tends to wander to my past. To carefree summer nights spent dancing and drinking deep into the night and stealing free day time hours at the beach with friends. To times when my responsibilities were limited and my attention was devoted selfishly to reckless, feckless fun. And it was okay. And sometimes I wish I could have some of those days and nights back...
Now that I'm older, presumably wiser, and most importantly, a parent, summer means figuring out what to do with my child while I work, my husband works, and he has endless weeks of no school. My appreciation for school grows with each summer...We prep for summer by finding camps and setting up playdates to fill his days with non-stop activity. He too is thrown off by the vast amount of free time. He loves school. He cherishes the routines of the school year...He misses friends during the summer.
I still love the longer days and having sunlight in the evenings. It makes me feel more productive to have it still be light when I return home from work. I can play in the garden, tinker on little backyard projects, enjoy a glass of wine while Dan grills something...and I love it. And I sometimes wish I could tuck my child into bed, slip on a slinky black sundress and sandals, and head out to a night club of my past and dance until I'm hot and sweaty and thoroughly happy...alas...there's work tomorrow, and a boy who wakes at dawn...
Now that I'm older, presumably wiser, and most importantly, a parent, summer means figuring out what to do with my child while I work, my husband works, and he has endless weeks of no school. My appreciation for school grows with each summer...We prep for summer by finding camps and setting up playdates to fill his days with non-stop activity. He too is thrown off by the vast amount of free time. He loves school. He cherishes the routines of the school year...He misses friends during the summer.
I still love the longer days and having sunlight in the evenings. It makes me feel more productive to have it still be light when I return home from work. I can play in the garden, tinker on little backyard projects, enjoy a glass of wine while Dan grills something...and I love it. And I sometimes wish I could tuck my child into bed, slip on a slinky black sundress and sandals, and head out to a night club of my past and dance until I'm hot and sweaty and thoroughly happy...alas...there's work tomorrow, and a boy who wakes at dawn...
Monday, May 10, 2010
The Best Day
Saturday was one of those days when being Cole's mom means you have tears (of joy) in your eyes most of the day! Sometimes I'm in awe of his openess and of his ability to do whatever it is he wants to do. Sometimes it means finding the best way to try something new, and other times, it's finding the right people to help. Saturday morning Cole flew a helicopter over the Valley and Saturday afternoon he surfed in Malibu to the cheers of a crowd of kids who were participating in a surf contest (Malibu Surfing Association's Surf Yer Brains Out jr. competion) and their families. The MSA invited Thera Surf to do an exhibition between heats in the afternoon. It left everyone inspired and tears were shed by many more than just the parents of the five kids who surfed! Cole had the best time because not only did he surf with Jimmy, who caught wave after wave, but three of the other kids were good friends of his (and we didn't even know they'd be there so it was a fab surprise!)...
The funny thing is that having the opportunity to do these amazing things doesn't even phase Cole. Over the years he's been able to pursue most of his interests and to live the dreams. I almost feel like he just knows that he can make things happen for himself. He wills things to happen. It's remarkable. He's a force of nature...My force.
The funny thing is that having the opportunity to do these amazing things doesn't even phase Cole. Over the years he's been able to pursue most of his interests and to live the dreams. I almost feel like he just knows that he can make things happen for himself. He wills things to happen. It's remarkable. He's a force of nature...My force.
Friday, May 7, 2010
Spring Fever
Maybe that's what I have...I've had no motivation to be at work this week...the entire week! I get there, do my thing, the whole while wishing I was elsewhere. I generally really like being at work and I enjoy my days there. But this week? No! Finally Friday is here and I couldn't be more pleased.
The weekend promises to be jam packed with fun. Tomorrow Cole is going to fly again. He's a particpant in Challenge Air, a non-profit that takes kids with needs flying in little four seater cesnas all over LA. He'll get to steer and fly the plane himself for part of the time. Then we rush to Malibu where he'll spend the afternoon surfing...TheraSurf is going to do a little exposition during a grommit surf competion at Surf Rider Beach...He's beyond excited about the day. And who can blame him!
Dan leaves Sunday before day break...Flying to Cannes for just a week this year. Always on Mother's Day. I get to spend the day with my boy, and my mom...A nice treat...
Nothing more interesting to say right now...I think the only reason I decided to write is because I'm delaying my departure to work...and I should go, right????
The weekend promises to be jam packed with fun. Tomorrow Cole is going to fly again. He's a particpant in Challenge Air, a non-profit that takes kids with needs flying in little four seater cesnas all over LA. He'll get to steer and fly the plane himself for part of the time. Then we rush to Malibu where he'll spend the afternoon surfing...TheraSurf is going to do a little exposition during a grommit surf competion at Surf Rider Beach...He's beyond excited about the day. And who can blame him!
Dan leaves Sunday before day break...Flying to Cannes for just a week this year. Always on Mother's Day. I get to spend the day with my boy, and my mom...A nice treat...
Nothing more interesting to say right now...I think the only reason I decided to write is because I'm delaying my departure to work...and I should go, right????
Friday, January 1, 2010
2010
I'm not one for resolutions because I never succeed at resolving. That said, I do find inspiration in the start of a new year. I do find myself contemplating the things I can do to improve myself and to better the world. But I think about that kind of stuff constantly, especially after having Cole. Having a child, especially a child with unique needs and abilities, has made me more aware of both the brightest and bleakest things and people. It has also made me more inclined to try to be among the brightest - to be kinder, more mindful, and more tolerant.
This year finds my family embarking on a great many changes. I don't where they'll lead or how things will wind up but I relish the journey and I'm looking forward to the uncertainty even if it scares me as much as excites me.
This year finds my family embarking on a great many changes. I don't where they'll lead or how things will wind up but I relish the journey and I'm looking forward to the uncertainty even if it scares me as much as excites me.
Tuesday, December 1, 2009
Limbo
The vultures are circling overhead...wings spread wide as they soar, waiting...We're all waiting...Waiting for the now inevitable phone call. Every time the home phone rings, my breathing stops and I wait, listening for something...anything, but silence.
My mother-in-law is dying and it's one of the most unsettling realities I've dealt with. I can't completely wrap my head around how Dan must feel, or my in-laws for that matter. While she's very much a part of my life, and someone I love dearly, I'm still on the outside just a hair, yet close enough that tears fill my eyes when I think about it and I quietly run through how we will break the news to Cole on a regular basis. We live in limbo waiting for the call. Tensions are running high...and there's nothing to be done...yet...we simply wait.
My mother-in-law is dying and it's one of the most unsettling realities I've dealt with. I can't completely wrap my head around how Dan must feel, or my in-laws for that matter. While she's very much a part of my life, and someone I love dearly, I'm still on the outside just a hair, yet close enough that tears fill my eyes when I think about it and I quietly run through how we will break the news to Cole on a regular basis. We live in limbo waiting for the call. Tensions are running high...and there's nothing to be done...yet...we simply wait.
Saturday, November 7, 2009
The Wait...
The wait is the hardest part...so the song says...
Sometimes the moments leading up to an event can be so excruciatingly driven by anticpation that the moment passes before you look up to notice. Other times, the anguish of the anticpation is disapaited by the success of the event, the breath you take as you walk into a room and realize you have all of your clothes on and a spinach free smile. And yet other events are marked by the tragedy of time moving us in different directions while our hearts hold onto the memories of the past, of what once was.
I saw someone I love dearly after several years out of touch. There was a great amount of anxiety built into the meeting. There was joy at the prospect of reconnecting with a beloved friend, and ultimately sorrow at the distance the years put between us, between where we once shared common ground, and now lead vastly different lives. The tug of the affection that we share bonds us forever but I felt such a sense of disconnect even as we hugged and were genuinely happy to see one another. I left, my walk weighted by the sadness...
Sometimes the moments leading up to an event can be so excruciatingly driven by anticpation that the moment passes before you look up to notice. Other times, the anguish of the anticpation is disapaited by the success of the event, the breath you take as you walk into a room and realize you have all of your clothes on and a spinach free smile. And yet other events are marked by the tragedy of time moving us in different directions while our hearts hold onto the memories of the past, of what once was.
I saw someone I love dearly after several years out of touch. There was a great amount of anxiety built into the meeting. There was joy at the prospect of reconnecting with a beloved friend, and ultimately sorrow at the distance the years put between us, between where we once shared common ground, and now lead vastly different lives. The tug of the affection that we share bonds us forever but I felt such a sense of disconnect even as we hugged and were genuinely happy to see one another. I left, my walk weighted by the sadness...
Sunday, August 30, 2009
Surfing Boys
I've always liked boys who surf...I've always wanted to learn to surf...I don't know why I never have. I spent years hanging out with people who could have, would happily, taught me...I think when I was younger and more insecure, I was afraid to ask, afraid to not be good at it, afraid to look foolish? I don't know...But by and large, I've always found that boys who surf are generally pretty cool guys...
And this past Saturday, it was never more evident...A mom at our school who I met this summer generously included Cole in an event that was part of the Malibu Invitational surf competition. Thera-Surf is a program where physical therapy is combined with surfing. The surfing component comes from Kim and her boyfriend, a known surfer, Jimmy Gamboa. He got several other pro or really terrific surfers to volunteer their time and expertise to take out eight children with varied needs. Cole was the only first timer...He has wanted to go surfing for about five years. We've dreamed of this kind of program and fantasized about trying to create one for years...Kim, Jimmy and a PT professor at CSUN actually did it! And they're amazing.
Cole was a little nervous - perhaps nerves and over excitement...When we first arrived at the beach he just sat and sort of checked out everything. The competition was going on and the announcers were chatting and a lot of activity going on around the beach with the different sponsors and vendors and teams...We met some of the guys who would be taking the kids surfing and Cole seemed to relax...Then he got into his wetsuit and was off...
He surfed with Ryan Conder who also surfs with Surfer's Healing so he's had lots of experience with kids...He paddled out with Cole on the front of his long yellow board until they were but a speck in the sea...They waited their turn and for a good wave and were off...Ryan stood up first, then pulled Cole to his feet and they rode the waves...Cole's little feet danced on the board and I can only imagine the size of his smile! They had three great rides...and Cole's ready for the next time...
Standing on the shore with all of the other parents, spectators and surfers cheering for our children was joyous. The guys who gave their time to do this have no idea how much they are appreciated and now a part of the weave of our lives. One of Cole's dreams came true yesterday...It became a reality...and something he'll be able to do again and again. He's joined the ranks of the cool surfers...
And this past Saturday, it was never more evident...A mom at our school who I met this summer generously included Cole in an event that was part of the Malibu Invitational surf competition. Thera-Surf is a program where physical therapy is combined with surfing. The surfing component comes from Kim and her boyfriend, a known surfer, Jimmy Gamboa. He got several other pro or really terrific surfers to volunteer their time and expertise to take out eight children with varied needs. Cole was the only first timer...He has wanted to go surfing for about five years. We've dreamed of this kind of program and fantasized about trying to create one for years...Kim, Jimmy and a PT professor at CSUN actually did it! And they're amazing.
Cole was a little nervous - perhaps nerves and over excitement...When we first arrived at the beach he just sat and sort of checked out everything. The competition was going on and the announcers were chatting and a lot of activity going on around the beach with the different sponsors and vendors and teams...We met some of the guys who would be taking the kids surfing and Cole seemed to relax...Then he got into his wetsuit and was off...
He surfed with Ryan Conder who also surfs with Surfer's Healing so he's had lots of experience with kids...He paddled out with Cole on the front of his long yellow board until they were but a speck in the sea...They waited their turn and for a good wave and were off...Ryan stood up first, then pulled Cole to his feet and they rode the waves...Cole's little feet danced on the board and I can only imagine the size of his smile! They had three great rides...and Cole's ready for the next time...
Standing on the shore with all of the other parents, spectators and surfers cheering for our children was joyous. The guys who gave their time to do this have no idea how much they are appreciated and now a part of the weave of our lives. One of Cole's dreams came true yesterday...It became a reality...and something he'll be able to do again and again. He's joined the ranks of the cool surfers...
Friday, July 24, 2009
So you had a bad day...
Or week...
For whatever reason, the logic in my life tends to be that when Dan is away, things go wrong. Last spring the electricity went out when he was in Cannes and had to be rewired. Later that year while he was in Toronto the bathtub nozzle broke somehow and the water couldn't be turned off...Another year the airconditioner died in 100+ degree weather. And then just the little things like the car overheating on the 405 at rush hour and pneumonia taking Cole and I down for two weeks of missed work...And none of it's Dan's fault and there's nothing he can do about any of but it just all seems to happen when he's away. I feel like Schleprock...
I'm having a bad week...nothing seems to be cooperating and there seems to be too much that needs my atttention and not enough of my attention to go around. I'm driving an average of three hours every day just on the commute to and from work/summer school. It's hot even in the evenings and I'm pretty sick of myself at this point.
I've developed a whole new appreciation (on top of the respect I already had) for single parents. It's fucking hard and there's just no down time...no such thing as "me" time, especially when you have a 24/7 child like mine. There's just not that "go entertain yourself for a little while so mommy can breathe" moment...And I know he'd love to do just that so it feels unfair to even mention it...I know he'd help me with anything I needed. And for that, the smile returns and I am reminded of how lucky I am that this is only temporary and that things can be fixed, traffic will flow again one day (okay, maybe not that, I do live in LA after all), and there's the boy and the beginning and end of my day who loves me...
For whatever reason, the logic in my life tends to be that when Dan is away, things go wrong. Last spring the electricity went out when he was in Cannes and had to be rewired. Later that year while he was in Toronto the bathtub nozzle broke somehow and the water couldn't be turned off...Another year the airconditioner died in 100+ degree weather. And then just the little things like the car overheating on the 405 at rush hour and pneumonia taking Cole and I down for two weeks of missed work...And none of it's Dan's fault and there's nothing he can do about any of but it just all seems to happen when he's away. I feel like Schleprock...
I'm having a bad week...nothing seems to be cooperating and there seems to be too much that needs my atttention and not enough of my attention to go around. I'm driving an average of three hours every day just on the commute to and from work/summer school. It's hot even in the evenings and I'm pretty sick of myself at this point.
I've developed a whole new appreciation (on top of the respect I already had) for single parents. It's fucking hard and there's just no down time...no such thing as "me" time, especially when you have a 24/7 child like mine. There's just not that "go entertain yourself for a little while so mommy can breathe" moment...And I know he'd love to do just that so it feels unfair to even mention it...I know he'd help me with anything I needed. And for that, the smile returns and I am reminded of how lucky I am that this is only temporary and that things can be fixed, traffic will flow again one day (okay, maybe not that, I do live in LA after all), and there's the boy and the beginning and end of my day who loves me...
Sunday, July 5, 2009
Fever
Fever seems to have taken over my life during the past two weeks. It started two Mondays ago with Cole going from normal to 103.5 in about ten minutes...and it hasn't stopped. He's had pneumonia, an upper respitory infection and two ear infections during the past 14 days and I've had the pneumonia and upper respitory...Maybe the ears but I never checked. With the exeception of a residual cough, I'm well on my way to being healthy. We've had the quietest, dullest days these weeks and yet before bed last night the boy felt warm..100.4, cool bath and Tylenol, off to bed and he wakes with 101.1! I don't get it. He's congested again and achey...It's back to the doctor tomorrow even though summer school starts tomorrow and I desperately have to get back to work...Working from home is just not the same...I can be productive but there's just something so nice about being amongst my coworkers and interacting that makes it seem more productive at the office. Let's all cross our fingers that it's just an ear and not something worse...Fever...when you kiss me, fever all through the night...
Saturday, June 13, 2009
My Time
I've had the whole morning to myself...some of the afternoon...I left before Dan took Cole to horseback riding to attend my 2nd Weight Watchers meeting (from now to be known as WW if I ever mention it). Yes, I've finally made the decision to lose the excess emotional baggage I've been carrying around for the past decade and thought some help might be a good idea. Down 2.2 my first week...not bad considering it was a crazy week and nothing really worked out the way it was supposed to. So after that, I leisurely ran errands and did some house puttering. I can't remember when I've had six hours to myself and frankly, I didn't quite know what to do with it. I should savor it since I'll be on my own for much of the summer while Dan's shooting a movie in Baltimore. It will be a busy, hectic summer for all three of us. Cole's doing summer school, a drama camp (they'll put on Newsies at the end) and then four weeks at a real old fashioned summer camp where they'll swim, hike, do archery, arts & crafts, gymnastics, soccer, some game called GaGa that he's very excited about, and more. What I imagine the idyllic summer camp experience to be...I'll be working and Dan'll have long days making the movie...He grew up in Baltimore so it should be a pretty fun time between the hard work. A different summer for us but hopefully a good one. Now I'm tired and wishing my time wasn't almost up. The boys are bowling with one of Cole's teachers but due to be back in just a few minutes. Part of me feels like I should have gone for a massage or yoga or something but the other part feels reasonably satisfied that a lot of running around was successful and that I don't have to drag Cole around to do lame, necessary errands...Perhaps I'll have a quick up of tea and curl up with a book until they're back...hmm
Thursday, June 4, 2009
He's not me...
The boy is sick again...Just a cold/flu fever thing...but congested enough to keep him up and witha sore throat that makes him prefer to spit instead of swallow...Dan picked him up from school yesterday with a sore throat and is staying home with him today. It felt so strange to leave the house with Cole there not feeling well. It's the first time in seven odd years that I've had to do that. I felt a twinge of nerves from Dan, not because he's not an amazing dad who is completely capable of taking care of the boy, but because he's simply not me, and because his efforts will be made more difficult because of it. He, in fact, often proves to be more attentive to Cole's needs, but it doesn't often matter. I feel for him. I see how frustrating it is and even disheartening. I wish there was something I could do about it but Cole's got his mind set and even when he's frustrated or angry with me, it's still me he craves. So I'm here at work feeling badly that I'm not home, feeling badly that Dan's missing work, feeling badly that Cole might be giving him a hard time...
Wednesday, June 3, 2009
I'm tucked inside a cubby hole
A cubby I call my office...It's my first experience with the dreaded "not really an office" office. Modular dividers...I'm quickly becoming crowded with binders, books, files, and piles of loose papers. Photos clutter the nubby push pin wall, along with memorabilia designed to make me look both cool and interesting. Privacy doesn't exist when your office is open and in the middle of the entire office space. Your conversations are easily overheard, although you can hear your coworkers just as easily so there's the bonus of selective voyerism. I frequently, nearly always, eat at my desk which is awkward at best. And yet somehow, I've grown accustomed to being on display. And I find myself wondering if this is how zoo animals feel, being watched constantly during every hour of the day?
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