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.

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!...

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. 

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...

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! 

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...

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.