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 »

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…

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