Archive for the ‘Fear’ Category

THREE LITTLE BIRDS (Bob Marley)
November 11, 2019

Several months ago a dear friend asked me to be part of one of the segments of a podcast she created.  It would be me, and another close friend, and her talking about the effect of having children with special needs on our lives.  The three of us know each other well so despite my nervousness, I agreed to do it.

I arrived at the designated address and was directed to a studio where there were big microphones (the furry ones that get placed right up near your face) and some chairs.  There were lots of audio crew people and producers and Amy, the host, our friend Dawn, and me.  We sat and started chatting under Amy’s topic direction.  The three of us each have a child with special needs.  Amy’s daughter is Cole’s age and we’ve been close for twelve or thirteen years now.  Cole and her daughter continue to be pals despite being at different high schools these past several years.  Dawn is someone Amy and I met a few years ago at a support group.  Her daughter is younger than our kiddos but she became a fast friend.  So the set up felt comfortable and the conversation somewhat familiar though we delved deeper than we might over cocktails at a mom’s night out.

After a point, the other people and equipment sort of melted away and the conversation flowed easily.  We recorded for an hour or more, shed a few tears, laughed a little and left our vulnerability on the floor.  I left feeling pleased about doing something new, getting out of my comfort zone and not allowing my nerves to completely defeat me.  Happy to have spent a little time sharing with two people I love and trust, and curious to know how it would all sound if and when it aired (is that what podcasts do? Air? Stream?).

Tomorrow, months since we recorded, our episode enters the world.  It’s available on whatever platform you listen to podcasts on like Apple.  The first five episodes of the podcast have all been released in the previous weeks and this is the final of this round.  I hope there will be more seasons or whatever podcast runs are called because it’s a really interesting, thoughtful and thought provoking premise.

It’s called The Challengers with Amy Brenneman.  It’s not a “I had a challenge and came through and everything is rosey” kind of look at challenges in life.  It’s more about how life challenges have us (collectively) stepping more into humanity because of or inspite of the challenges.  The guests she chose for the these first six are all fascinating and diverse.  I highly recommend listening to all of them.

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Here’s a link to the podcast.   I hope you listen…

The Challengers

LIONS & TIGERS (Sleater Kinney)
November 4, 2019

Lions and Tigers and Bears, Oh My!  I haven’t written anything for ages. I don’t really know why because it’s truly therapeutic for me and I could really use the release of fret and fear that I have been carrying around for most of this year. Lions, tigers and bears seem minor in terms of the hurdles and challenges we’ve faced and are facing in 2019.  I plan to make time to write more so will use this first post as a bit of a matter of fact catch up.

Cole turned 18 in September so we spent several months getting things in order to set up a conservatorship so that we can manage his medical, financial and educational needs moving forward once he’s legally an adult.  All of the stress led up to a fairly innocuous court hearing whereby we granted the conservatorship rights.  It doesn’t feel great to know that we’ve essentially taken away most his legal rights, however he’s not capable of making a lot of major decisions on his own so it’s the best option.  We’ve always and will always consult with him and no one has his best interest ahead of all else than we do.  Though we received the official documents, there remains a lot of loops to close and loose ends to finalize, like closing the guardianship that was in place for most of his life.  It feels never-ending.

While all of the conservatorship stuff is going on, we also learned that Cole’s scoliosis has worsened to the point that he is having surgery in December to try to correct it as much as possible. His spine has curved to such a degree that the right side of his pelvis is nearly touching his lower right rib cage.  The distortion has caused his organs to squish together which can ultimately cause a lot of problems, including breathing and heart issues. It’s a fairly major surgery, with his back being cut open from top to bottom so that the surgeon can straighten his spinal cord and insert titanium rods to support the new position on either side.  It’s not without risks due to it being a lengthy surgery (about 10 hours), potential nerve damage, infection due to the size of the incision, but the outcome promises a lot of benefits and improved quality of life for him.  He’ll even end up appearing taller once his spine is straight, a benefit he favors most. I plan to document all of this as much as I can as I’ve not found a lot of parent information about the whole process and particularly the recovery and healing.

In the midst of these big events, we are also trying to prepare for Cole’s transition from high school to the next phase of his education and life skills training.  There are a handful of career transitional campuses (CTC’s) in our area that offer various programs for young adults with special needs where, dependent upon their abilities, they are exposed to different career tracks, in addition to life skills (basic computer skills, creating resumes, managing living spaces, finances, and the like), and continued education.  Cole’s next IEP, scheduled right when he’s due to return following the six weeks of recovery from the surgery, will start creating the foundation of the transitional IEP that will follow so we have felt pressure to make sure we are prepared in terms of knowing what we want for him moving forward.  Part of this has meant touring each CTC to get an understanding of what each offers.  There are two that are impressive, but only one that felt like it would be somewhat appropriate for Cole.  The next step will be to work with them to try to create the path for him that will feel wholly appropriate.  Never a dull moment!

If I stop to think about it and take everything going on at once, it’s overwhelming.  If I allow myself to think too much about the implications or potential outcomes of any one of these, there’s a darkness and sadness that creeps in.  At times it takes all I have to embrace the rites of passage that exist in my life, in Cole’s life.

More on that another time…There’s an amazing boy, young man, who needs me to be strong, smiling and his.  And I will be…I’ll be everything he needs.

 

IT’S DIFFERENT FOR GIRLS (Joe Jackson)
September 28, 2018

I was not an innocent young thing when I was in high school.  I snuck out to go see bands play in Hollywood, went to parties as often as I could, and kissed a lot of boys.  I had a group of close girlfriends, what would now be called my squad, who I spent most of my free time with, sometimes including some of our guy friends in the mix, or meeting up with them wherever we would land.  We all experimented with drinking, some drug use and boys.  Not all of us left high school virgins, but some did. We weren’t wild or reckless.  We were actually considered “nice” girls.  We were pretty typical teens in the early 1980’s.

I met my first boyfriend when I was 15, and was 16.  I was in 10thgrade and he was in 11th.  We dated and hung out for quite a while before he became my first. I had it in my head that I should wait until I was 16 to have sex.  I don’t know where that notion came from but wait we did.  Despite having a caring relationship, we broke up when I cut my long blonde hair short as I got more into punk rock.  So much for young love!

Your first time is supposed to be the cherished memory you carry with you.  The general sweetness of the nerves and fumbling and genuine belief that you are in love and this is the next, natural expression of that young love. At the time, it was all of that…plus in all honesty, it was fun.

I didn’t have a boyfriend for a while after that first relationship.  I kissed a few boys at parties (kissing was probably one of my favorite activities – I know I’ve written about my love of kissing before) but I didn’t have my second boyfriend for quite a while.  However, my opinion of sex was forever changed not long after the breakup.

One Friday, we all found ourselves at a post football game house party. A fairly usual occurrence. To this day I remember what I was wearing (A black mock turtle next sweater that was my mom’s when she was in high school, a wool pencil skirt, fishnets and black pointy toe pumps) and I can picture the front entrance of the house, double doors, with the garage and driveway to the right, with a large BMW sedan parked in the driveway, close to the garage door. There were shrubs that lines the walkway to the right of the door that led to the driveway.  There wasn’t a light on the garage, but the porch light glowed brightly.

We arrived late.  The party was already in full swing.  Music was playing and kids were spilling through the sliding glass doors in the living room out into the lit up back yard. A guy I liked was there and though he didn’t often show me any attention or regard, he came up and started talking to me.  He gave me a beer and we continued to talk about bands we’d seen.  It was loud and he took my hand and led me out to the front yard.  No one was out there.

He kissed me and I kissed him back, thinking, wow he likes me.  He moved me over to the driveway, backing me up against the garage door, still sort of kissing me. Then he moved his hands to my shoulders and started sliding me down the door until I was on the cement driveway behind the car.  I felt uncomfortable and nervous and suggested we go back inside.  I started worrying about what was going to happen next and yet I couldn’t quite escape him.  He still had me pinned down and was sort of squatted over me.

He pulled my skirt up and reached down and ripped my fishnet stockings open as I squirmed and tried to get away.  Then he pushed inside me.  No fanfare, no utterances of care.  It was over quickly, though it felt like ages laying there in the dark, on a cement driveway, pinned between a garage door and BMW, while my friends and lots of other people were inside having fun.  All the while he acted like it was a normal thing.

No one worried that I wasn’t inside the party because my friends knew that I thought he was cute. They figured we were making out.  They were probably happy for me that he had shown interest in me.

He actually extended a hand to help me up after, though he smugly went back inside alone, while I attempted to pull myself together and get my clothes back in order.  Eventually I went back in, found a drink and shook.  I couldn’t understand why that had happened and I kept replaying it, wondering what I did to make him think that it was what I wanted or that it was okay.  I doubted myself.  I blamed myself.  I didn’t understand.

Date rape wasn’t defined for at least another decade after that experience.  Those kind of experiences were brushed off as boys getting carried away or girls leading them on.  You know, you can’t get a guy all lathered up and not let him get off.   Peers weren’t supportive and parents were fairly useless.  You were not believed, you were judged.  You learned to just live with it and carry on.  If you were lucky, you didn’t get pregnant (because this was early 1981 and AIDS was just emerging so condoms were not readily used). If you were lucky, no one found out and you weren’t branded a slut.  If you were lucky, this wouldn’t have happened to you.

Sadly, it seems that today, almost forty years later, it’s not that different.

 

 

 

 

 

 

Anthem (Leonard Cohen)
September 14, 2018

There is a crack in Everything. That’s how the light gets in…

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It’s one of my favorite song lyrics from the Leonard Cohen song Anthem, but a long standing notion that the crack or imperfection is what gives us a path to greater existence. Rumi, the Sufi poet and philosopher, has a similar oft quoted line, “The wound is the place where the light enters you.”, invoking the same idea of imperfection being a road to enlightenment.

I feel like this is the endless journey I have encouraged myself to pursue.  It’s one of acceptance and betterment and I hope to travel it for the rest of my life.  For most of my teen and adult years I’ve struggled with confidence, self-love, and frequently battled myself and losing.  I tend to be my own worst enemy and harshest critic.  I allow my insecurities to shout the loudest and engage them to idly defend me when I feel put upon or angered.  They’re not my best voice because they prevent me from seeing myself or allowing me to be vulnerable.  They’re cruel and lash out.  They deflect.

I’m trying to teach myself to step back and react from my heart even if it means admitting I’m culpable in an action or behavior or that I myself feel hurt or scorned by someone or an action.  Decades of unfettered reaction are slow to turn around but it’s an effort worth taking because when I’m successful, when I approach conflict with calm and sincerity, it’s resolved amicably nearly always.

I want to be a good example for my son, an example of someone who has flaws but is constantly trying to evolve and resolve and flow.  I want him to see that he can be fluid in this way and open his heart and mind to be kind and caring even in conflict or stress.  I want him to know that the pursuit of enlightenment is something more personal and internal for every one of us, but that the result of this endeavor results in a gentler, kinder community and world.

When I was a kid, I was often as described as “nice”.  I kind of hated it because I likely wanted to be thought of as the pretty one or the cool one or the smart one.  No, I was the nice one.  In retrospect I greatly appreciate the compliment.  We should all strive to be the nice one. We should all let the light shine through our cracks…

 

 

 

CHANGES
September 18, 2017

It’s not often that parents of special needs kids do anything to radically rock the boat, but I recently did something radical that impacted everyone in my family. I got a breast reduction. I have contemplated doing so for the better part of fifteen years but held back for any number of reasons – cost, time off work, the physical restrictions, my weight, and the fact that electing to have surgery made me nervous.

I researched and researched and finally decided to just go in for a consultation so I could learn my options, my potential outcomes and whether it could be covered by insurance. My surgeon took one look at my bare, braless breasts and exclaimed, “They’re huge!” Followed by “Please let me help you”. I was simultaneously amused and taken a back. She’s a breast surgeon; surely she’s seen large boobs. Apparently mine were in a class of their own. Who knew?

I learned that there was little doubt that my insurance would approve the reduction and that the surgery itself is considered a fairly simple surgery. There’s no muscle or organ cutting and it generally is a 3-4 hour procedure. I learned about the post-op care, very limited movement for the first couple of weeks, and no lifting or sweat worthy exertion for several more. This again gave me pause because I have a 15 years old child who I lift and transfer and dress and change. How would that work with just one of us being able to do that for nearly two months?

My husband was supportive and cleared his travel schedule (he travels a lot for work). He assured me we could get through this and that it if this surgery was necessary and wanted, we’d figure it out. We do have a history of getting through all kinds of challenges, obstacles and uncertainties. Part of it comes with the territory of special needs parenting (you have to be very malleable) and part of it comes from us being a pretty good team.

So I moved forward and got it on the books. It was initially scheduled for August 14th, the day before Cole started his sophomore year of high school, but it got moved to the next, his first day of school just weeks before. We enlisted childcare to be home when his school bus arrived in case we weren’t yet home (the surgery was supposed to be 3-4 hours, starting at 10am so chances were good we’d be home on time), but just to be safe…childcare in place.

I cleared it with work, with the plan to work from home after the first week and then take it from there. I’ve been at the same company for many years and had their full support. It goes without saying that telling your male bosses that you’re having breast reduction surgery is quite a funny experience! Lots of gulping on both sides and averted eyes!

I got cleared by internist and again by the surgeon, and off we went.

My surgery lasted hours longer than a typical reduction, over six hours. I felt groggy leaving the surgical center, but immediately noticed the effect of the reduction. My neck, shoulder and back pain lifted. I had drains and tubing sticking out of my sides, obstructing most of my arm movement and I felt sore. I was warned that they do a lot of lifting of your torso and twisting during the surgery to ensure that everything is even, and in place properly and symmetrically. The after effects of that did not go unnoticed.

It will be months before my new breasts are completely healed and able to lead a normal life but almost instantaneously the effects of the surgery are life changing.

More to come…