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...
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