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.

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.

UNDER PRESSURE (David Bowie & Queen)
November 22, 2019

A friend recently told me about a study that concluded that the chronic stress special needs parents experience is akin to the stress experienced by combat soldiers.  It’s a shocking comparison but the reality of the continued level of care of a special needs child adds complexities to the lives of the parents for their rest of our lives.  I get it.  My son is eighteen now.  Nothing about his care has changed in terms of his needs except I’m now eighteen years older and he’s a lot taller and heavier.

While we strive to provide him with as much independence as possible, and with a rich life outside of home and school, it doesn’t come easy.  As parents of special needs children know, nothing about our children is easy.  We fight for adequate, affordable medical care, inclusive education opportunities (for which we have annual IEPs that require a lot of prep and determination to ensure that our child’s rights are protected, his needs met, etc.), we work hard to maintain friendships and social opportunities, we bathe, dress, transport, transition, entertain, feed, tend to personal needs, fight bureaucracy and support our children in every way imaginable.  We do it with love and care because we love and are dedicated to our children.

The considerations that go into planning anything (restaurants, friend’s houses, travel, long outings) is daunting. You don’t just jump in the car and go (and you can’t send him off in someone else’s car because you need a wheelchair accessible van).  You need to ensure that your destination is wheelchair accessible, that you have access to reasonable bathroom accommodations for changes, that your friend’s house doesn’t have a steep drive way with multi level floors or steps leading up to the house, that the restaurant can accommodate a wheelchair, and more.

I also recognize how fortunate I am to have a partner who shares all of the parenting demands.  He’s highly involved and supportive of both Cole and me.  Not all families have the luxury of two able bodied, loving, involved parents. 

But it isn’t easy and there’s rarely a break.  Our kids needs don’t change as they age.  While typical peers are walking, talking, dressing themselves, making friends, feeding themselves, showering, toileting, going to school, learning to drive, going out with friends, attending concerts or movies or dating, we are still taking care of our kids.  When typical peers are heading to college and moving out on their own, we are still taking care of our kids needs.  We’re just a lot older, which makes some of it harder.

The physical nature of caring for a child like mine is that it puts a lot of stress on your body, especially as it ages, between the transfers, transitions, lifting (my son, thankfully, is small – just around 80 pounds), and the eighteen years of interrupted (and sometimes complete lack of) sleep.  There’s no one else who is going be there, so you just do whatever needs to be done, no matter what state you are in.

A lot of us have kids with medical issues on top of everything else, so when my son exhibits some reflux occasionally, I begin to worry that his Crohn’s Disease is acting up, and when he’s scheduled to have a major surgery that has significant risks and requires a lot of juggling to get pre-op appointments and insurance issues lines up, there’s stress. When he comes home wet from a leaky g-tube, is there blockage, does he need a replacement, or incompetence? There’s also financial stress in that therapies, equipment, supplies and medical treatments, medications and procedures all come at a cost.  And more stress.

My husband and I both work full time as well so there’s the added pressure of ensuring that work doesn’t drop and that we maintain good standing at our respective jobs.  We are fortunate in that we both work for companies that have flex time and where we can work remotely if needed, like from the hospital while our son is recovering from a surgery for a week.  We are fortunate that we have insurance, even if it’s not always easy to access certain benefits.

We don’t have family around who can physically help with childcare.  We have found a couple of people who work really well with Cole and who, when available, are happy to spend time with him and to support us as well.  Of course, at a big financial cost.

The idea of any kind of balance in your life when you have a 24/7 child and work full time is laughable. There’s not a lot of “me” or “us” time in your days – ever.  The notion of self-care is just that – a notion – not a reality.  As vital as self-care is, it’s just not something finds its way into daily routines with ease or consistency.

It’s hard to maintain friendships but I strive to do so because my friends are my sanity and lifeline.  Without regular girl’s night outs, I’d lose my mind.  The conversations, laughter and love feed my soul.  It’s also hard to keep a marriage healthy when, as a couple, we have virtually no home time alone and rely on occasional date nights for some much-needed adult time.  At this stage in life, having your social life still dictated by childcare availability is stressful and simply requiring childcare adds an additional cost to going out. Childcare often ends up costing more than the actual date.  But no going out alone sometimes is not an option.  It nourishes us and gives us much needed time together.  It’s not a luxury.  It’s a necessity.

Following the conversation about the stress comparison, I had what became a heated conversation with someone close to me who I thought had a sense of what my life is like and understood the pressures I live with and the total long term impact and worry exists in my life.  Was I ever wrong.  Instead of compassion about my concerns regarding the upcoming surgery and particularly how hard the recovery will be for Cole and us, I was admonished for getting upset and raising my voice. My heart broke.

While I don’t need or want recognition or accolades for doing what any parent would do in the same circumstances, a little understanding and care goes a long way.  I love my son to the core, and I love being his mom.  Nothing is more important to me than him being happy and living a life that is rich, full of experience, love and joy.  But in that existence, we as parents, also need to have our own little bits of pleasure, peace, and ourselves.  Without it we would implode.