Archive for the ‘holidays’ Category

BLUE CHRISTMAS (Elvis Presley)
December 24, 2019

Today is Christmas Eve.  We’ve been living at Children’s Hospital Los Angeles (CHLA) since December 4th.  Cole’s surgery has been rescheduled due to a cold he caught here.  If all goes well and he stays healthy for the next weeks, it will be January 6th.  We thought by January 6th we’d be well into healing but have hit bumps all along the way.

Christmas Eve is Cole’s favorite holiday.  For seventeen of his Christmas Eve’s, we’ve gone to my brother’s house to celebrate with our family and extended family, usually my sister-in-laws siblings, their kids and her dad an his wife.  Sometimes her half siblings and their children join as well so there’s 20-24 people gathering together for a night of fun.  We arrive with a non-gender grab bag gift, ready for a great night. The evening starts with cocktails and appetizers as everyone tumbles in.  Lots of catching up and lively chatter.

Eventually we all take our assigned seats and the feast begins.  It’s a traditional roast beef and Yorkshire pudding meal with two salad choices, two veggies, mashed potatoes, au jus, horseradish and lots of yummy wines.  It does not deviate.  Convivial conversation abounds as we all devour the delights.  Once we’re done eating, we migrate to the living room were we all don crazy Christmas hats that my brother has collected over the years. Some are Santa hats, some silly ones, some Hanukkah ones (we’re a multi-cultural family).  We then choose our day of Christmas and sing a rousing, often terrible Twelve Days of Christmas.

While we’re singing, someone sneaks out and throws on a furry, plush Santa suit and beard and appears just as the singing ends with little gifts for the younger ones.  Over the years it’s been most of the adults, and more recently the eldest of the cousins.  It’s silly but depending upon who is Santa that year, can be quite funny.

Following Santa’s visit, we settle back around the tables with cookies and sweet treats and take an annual holiday trivia quiz to determine the playing order for Dirty Santa.  Once we set the order, the game begins.  Starting from low to high, someone selects a grab bag gift. The next person can either steal (maximum of three steals per gift), or choose a wrapped grab bag gift, and so on.  The coveted gifts get stolen until they can be stolen no more.  Gift cards and tech gadgets are popular.

At this point it’s nearing 11:00 pm and everyone’s winding down, heading home, getting ready for Santa and the next day’s festivities.  In Cole’s mind, this is the perfect night.

Sadly, this year we’re stuck at CHLA.  It’s a fantastic hospital to be stuck in if you find yourself stuck in a hospital on Christmas.  But nevertheless, we won’t be with the rest of our crew and one of us will wake up at home alone (me) tomorrow because only one parent can stay the night and it’s my husband’s night.  We were gifted a little faux tree this morning complete with twinkle lights and few ornaments and have a festive collection of holiday stuffed animals that have been gifted to Cole by thoughtful visitors lending further to the holiday feel, though it somehow still doesn’t quite feel Christmasy.

Cole seems to fluctuate between being happy and sad when reminded it’s Christmas Eve. I think he might rather just have the next two days pass without much fanfare as we inch closer to the January 6th date.   Tomorrow I’ll bring a festive bag, left by Santa, with his gifts and hopefully it will be a cheery day.

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HANGING AROUND (The Stranglers)
December 7, 2019

Our lives took a very unexpected turn on Wednesday.  After months of prep for Cole’s spinal fusion surgery, we checked in on the surgery day, readied ourselves for a long day of waiting and surgery only to learn that when Cole was put into traction pre-surgery (but already under effects of anesthesia), his nerve function diminished so the surgery was put on hold.

Instead he was outfitted with a halo, a barbaric looking traction crown that is basically screwed into his skull, that has a handle of sorts at the peak from which weights on a pulley are looped through to slowly stretch out his spine over the next weeks in preparation for eventual spinal fusion surgery on the 24th.  Over the course of 20 days, the weight will go from five pounds to almost forty.  During this process Cole will remain at CHLA and will be monitored and x-rayed to ensure that the traction is working and that his spinal cord is handling the stretch well.

Fortunately, there is a wheelchair that’s been modified with the same traction set up so Cole can move around the hospital a bit during our stay, though after three days in a single room are already taking their toll.  We’re all adjusting to our new “home” and my husband and I are trying to work out reasonable schedules so that one of us is always with Cole (one parent is allowed to sleep there so we’ve been switching off nights) and one of us is working to maintain life – i.e. taking care of our dog, house, groceries, etc.).  We’re both able to work remotely, though given the longevity of our stay, we’ll each likely  go into our respective offices next week since there’s no real need for two of us to be in hospital all day, every day.  The trick is going to be finding some balance of normalcy in this weird existence.

Following the surgery on the 24th, we’ll have another week of post-surgery recovery so we’re likely there into the New Year.  Definitely not the holiday season we anticipated.  We’ll just be hanging around CHLA, making the best of a challenging situation.