Archive for the ‘Correspondence’ Category

A LONG DECEMBER (Counting Crows)
November 29, 2019

Very simply – December is going to kind of suck.

Cole is having spinal fusion surgery on December 4th.  The surgery itself is arduous – about ten hours under and a full week of hospital recovery.  He’ll have his spinal cord straighten and supported by two titanium rods from pelvis to the top of his spine when all is said and done.  It’s not an uncommon surgery for people with cerebral palsy, who are largely wheelchair bound.  Over the course of his eighteen years, Cole’s spine has very slowly curved more and more, until the past year and half where it exponentially grew more severe seemingly with the onset of puberty.  The right side of his pelvis is nearly touching his right side rib cage.

As much as I loathe the idea of putting him through another long surgery and painful recovery, the implications of the scoliosis worsening are far more concerning.  It can have a significant impact on his overall health, including breathing (his seems to be a little compromised already) and heart issues.  Plus he’s likely been living with a fair amount of discomfort for a while.

I know other families who have been through the surgery and ultimately, no one has yet to regret doing it and the benefits have been truly impactful in terms of improved quality of life for their children.  So it’s an incredibly difficult no brainer.  From our previous experiences with major surgeries, I know that once Cole has mostly recovered and resumes his regular routine that the much of the hellish procedure and recovery will quickly become a distant memory.  Cole’s very resilient in this respect, which makes us the same.

Several years ago when Cole spent a summer recovering from a huge hip surgery that left him bedridden for two months, I put out a challenge of sorts on Facebook to all of my FB Friends whereby if someone sent Cole a card, note, joke, movie recommendation, really any sort of mail, he would write back – and he did write back to about 150 people all over the world.  It was amazing and it was the best diversion during recovery and extended our support network exponentially.

Christmas is Cole’s favorite holiday.  Our traditional Christmas Eve event at my brother’s house is literally his favorite day of the year and his most favorite evening.  He also loves holiday music to such a degree that I’ve had to limit the listening window to start at Thanksgiving and run up to New Year’s Eve.  He loves sending holiday cards.  So my thought for his recovery this time is to challenge everyone to send Cole a holiday card and he’ll send one back.  It will make him so happy and hopefully help ease the post-surgical pain, discomfort and boredom.

Please write!  We promise to write back…

PM me if you want to send a card.

Posted in cerebral palsy, Correspondence, Family Life, Gratitude, healing, Life, Special needs parenting, Surgery | Tagged: , , , , , , | 1 Comment »

TALK TO ME (Chris Isaak)
September 15, 2018

Cole’s first junior year report card arrived yesterday.  Straight A’s. He’s fairly consistently receiving A’s and a very occasional B on his high school report cards and always with E’s, and is always proud of himself when the grades are revealed.  We are proud too, of course.  For Cole, the grades are both a mix of subjective grading, his effort, and his understanding of the given subject.  He has modified work and the benefit of one on one class time with his Special Ed (SpEd) teacher.  It doesn’t diminish the grades and is certainly reflective of the attention he puts forth in class.  He takes a fair amount of pride in maintaining his grades and in the attention he receives for doing so.

I just wish he put forth the same interest and effort in developing some of his communication skills and independence at home.  He would gain so much by engaging in conversation with people outside of school, including me and his dad.  He has friends who desperately want him to use his Tobii (eye gaze generated voice output device) to talk with them.  Teens, even understanding, kind hearted teems, don’t always welcome the parent invasion when they’re hanging out.  Having time with friends, independent of a parent or even of a support adult to help facilitate conversation, would be so incredible for him.  It’s such a valuable facet of friendship.

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I’ve gone so far as to suggest to some friends that they tell him that they won’t chat with him until he starts chatting with them using his Tobii.  His friends are too sweet to listen to me and continue to talk to him despite his aversion to the Tobii.  He met a girl this summer who is very similar to him in diagnosis and also uses a Tobii, though she is happily reliant upon it and uses it well and often. I’m told she pressed him to use it during summer school and he was slightly more receptive, which makes me hopeful that he with the right motivation he’ll warm to it.

I understand part of his reluctance, or disdain, for the device.  Cole’s a people person.  He’s very keen on eye contact and adept at communicating some of his needs and reactions through small sounds and various facial expressions and smiles.  The Tobii obstructs his direct view of people he’s “talking” with.  It’s also taxing to use, both physically and mentally, so an element of laziness factors in too, especially if he’s asked to use Tobii with his dad and I.  We’ve developed a strong understanding of him, but even with us there’s so much left to our interpretation.  He’s often just not bothered enough to be frustrated or care. I really wish he were.

I just want him to use his voice…to express his thoughts, opinions, and needs.  I want him to deepen his friendships by opening them up through mutual communication and the intimacy that comes from friends sharing. I want him to engage new people in conversation or to initiate conversation. I want him to show interest in other people by asking questions or simply saying “Hello” aloud.  I want him to expand upon his education by using his voice to express his knowledge and understanding.  I want all of these things for him…

If only he did…

Posted in cerebral palsy, Conversation, Correspondence, Education, Family Life, High School, Independence, Life, Motivation, Special needs parenting, Teenage angst | Tagged: , , , , , , | Leave a Comment »

HEAT WAVE
September 10, 2015

Fair warning…this is my little bitch fest today…I’m sick of hot weather!

And I’m watching one of my colleagues unload the contents of his refrigerator into our office fridge because he’s without power in his apartment due to the current heat wave. It’s topping 106 in Woodland Hills where Cole goes to school, and close to 100 in the city for the third day in a row.

It’s the kind of heat that has weight and tremendous volume. It hits when you step outside and encloses your being, stifling any desire to move further into its awaiting embrace.

Of course the heat, even extreme heat like this, is not usual to Southern California. I can think of two different years when we had to move to a hotel for a couple of night when our power went out due to widespread overuse.

Despite being a native of Los Angeles, of the San Fernando Valley in fact (I am an original Valley Girl circa 1982 song fame), I find the heat intolerable. I’m not a fan. It makes me cranky, sweaty (and I deal with hormonal sweat even in freezing weather so heat induced sweat just sucks), and lethargic. It’s hard to motivate to do much of anything when it’s so hot.

Cars are hot, bedding is hot, and my office is freezing! Dressing is odd because I need a sweater at work but if I step outside I melt. Being good community partners, we set our house thermostat so that it stays off during the day when no one is home but it takes hours to cool down once bodies are in the house so it’s never really completely comfortable these day.

I don’t like sleeping when it’s nearly 80 degrees in my room. Poor Cole is wrapped up in bracing that’s made of plastic and other synthetics that don’t breathe so he’s reduced to a puddle of boy come morning, though he’s more tolerant of the heat than I am. At least I think he is…Perhaps I’m just more vocal?

Thankfully, it’s supposed to start cooling down after the weekend…for a few days anyway. I have memories of actually hosting Thanksgiving dinners outside in the backyard because it was still nice and warm…sigh.

Posted in cerebral palsy, Correspondence, Family Life, Life, Special needs parenting | Tagged: , , , , , | Leave a Comment »

TODAY
September 1, 2015

Today is the first day that Cole’s been without a parent since having surgery on June 18th.   Today is his first day of 8th grade. Today is the first time he’s been out of the house for more than a few hours since the surgery. Today is the first time someone will be caring for him who is not his parent. Today is the first day both my husband and I left the hose for our respective jobs to work in our respective offices. Today is a highly liberating day for the three of us….

The first paragraph was written on August 17, 2015: I couldn’t muster the energy to finish the entry but promised myself that I’d return to writing September 1st. So here it is September 1st, another Today.

I feel like I fell off the planet when Cole went in for surgery. Despite continuing to work, Monday, Wednesday, Friday at home with a caregiver managing Cole’s primary care and entertainment, and Tuesday and Thursday at the office, where I got to escape some of the claustrophobia that accompanied the summer of recovery.

During the summer, which felt incredibly long, I grew to loathe my bedroom. We had set it up for Cole since it’s roomier, has an overhead ceiling fan to help with summer heat (no fun if you’re wrapped in full leg casting) and he fit on the larger bed more comfortably. Cole spent a month of summer in the casts, and then moved into what we, very mistakenly, thought would more comfortable and manageable knee immobilizers and a back & hip brace. Not so. He has to wear those 24/7 for two weeks and now just at night.

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It wasn’t the summer I’d imagined when preparing for the surgery. I had hopes that we’d be able to provide him with lots of visits and time with friends but unfortunately that just didn’t happen. His life stopped moving for two months, while friends were busy with their summer fun. It’s understandable and reasonable, but still very hard to explain to your lonely child.

One of the highlights turned out to be the letter campaign Just prior to Cole’s surgery I initiated on Facebook. I challenged my FB friends to write to Cole. A letter, card, postcard, list of favorite books, movies, music, anything, and he would write them back. He received nearly 200 pieces of mail, including some thoughtful gifts, and we spend a lot of time writing everyone back. We had cards from friends, family, coworkers, notes from various countries like Hungary, Japan, the UK, and Belgium. It was overwhelming and fun! A great non-tech, no screen, activity!

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And then as long, and monotonous, as summer seemed, it passed and school’s back in session and life has returned to some sort of normalcy. It feels fragile though, like we’re on a tightrope teetering from side to side to maintain the semblance of being okay.

But I’m not sure that we really are.

Posted in cerebral palsy, Correspondence, Family Life, Life, Special needs parenting | Tagged: , , , , , , | 2 Comments »

BOX FULL OF LETTERS
June 26, 2015

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We arrived home from the hospital to a pile of letters and packages addressed to Cole.  My letter writing campaign idea seems to have struck a chord.  Cole’s received postcards from Hungary, Japan, and Minnesota.   Lots of friends have sent cards, notes, and little presents.  He received a little pink rubber duck with duck jokes (He loves jokes!) from one of my coworkers and lots of other cool things.  The teenage son of a woman I went to middle school and high school with sent some special personal things, and wrote a beautiful letter.  From the looks of things Cole’s going to have lots of pen pals this summer and he couldn’t be happier.

It’s interesting to see how positively people responded to the call to letter writing in this age of electronic everything.  I love a good letter and adore receiving postcards.  Cole does too.  There was a time when he spent a lot of down time writing colorful letters to his friends so they would get mail.  I think for him the impetus was a Little Bill episode where Little Bill’s kindergarten class learned about sending mail.  While I greatly appreciate the ease and convenience of email and texting, there’s something so much more personal about actually putting words to paper, sealing them in an envelope and sending the letter off to a treasured recipient.

Among the notes and treats, Cole received some great suggestions of people’s favorite movies, music and books.  A few friends drew some wonderful pictures and he received lots of love.  We all feel it and are so grateful and appreciative of the effort and kindness.

We’re having fun contemplating responses and finding fun cards and papers to send notes back.  We, of course, would love to have some people keep writing…old fashioned pen pals!  it’s such a great way to get to know someone and to form a connection that otherwise wouldn’t exist.  It’s pretty amazing…

Posted in cerebral palsy, Correspondence, Family Life, Friendship, Life, Special needs parenting | Tagged: , , , , , | Leave a Comment »