I’LL BE THERE FOR YOU (The Rembrandts)
December 9, 2019

We’re closing our 6th day of pretty much living at Children’s Hospital LA (CHLA).  Cole was admitted last Wednesday and will be here until the end of the year, maybe just into 2020.  We’re surviving.  Actually better than surviving.  We’re getting into a routine where we’re both hanging out with Cole during the day and then one of us goes home to attempt a good night of sleep and to spend some time with Luna, our poor, needy ten year old Golden Doodle.  Then it’s back to CHLA.

Cole’s days are filled with lots of nurses, doctors, residents, and various support staff popping in for vitals, to add weight to his traction, to help us with anything we need – like transferring him from the bed to the traction wheelchair for an outing or helping with other needs.  He’s also had a barrage of very welcome and much appreciated visitors.  At first it felt overwhelming but now that he’s more settled and doing remarkably well with the traction, the visits have been a great source of joy.  For him, and for us.

It took me a long time to understand that it’s okay to ask for help, support, or care.  Early into my parenting journey, I did my best to be an island.  I have always been a pretty self-sufficient person and in fact often served as the maternal one amongst my pack of friends when I was single. I’m pretty good about jumping in when someone is in need and am always at the ready to help. I’m appreciative when someone recognizes that I am in need, but in the past it was hard for me to fully accept it.

Nowadays, I try to ask.  I reach out to friends when I’m struggling and I have tried to build a support network so that I don’t have to go through things alone (I should clarify that my husband is the biggest part of my support and a great partner – but he’s also sometimes going through the same things as I am such as Cole’s current medical situation).  I was part of a special needs mom’s group for a while, which I think is where I  both realized how much I like having people in my life who understand some of the unique parts of my parenting experience, and how valuable regular sharing is to me.

I’ve learned that being an island is not what’s best for me.  I like knowing that people are thinking of me and wishing my family well, particularly in high stress situations like the traction and looming spinal fusion surgery.  I also really like being able to show the same support and care to my friends, near, far, and in the social media stratosphere. It’s one of the most positive aspects of social media – the strength and heart of many.  I know not everyone feels this way but having gone through some of Cole’s surgeries quietly and the more recent ones more publicly, I can honestly say that the impact of sharing truly helps to quell fears, stand tall, and to make it through the long days and nights.

So keep the love coming and know that if ever you find yourself in need, I’ll be there for you.

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.

THANKFUL (Kelly Clarkson)
November 26, 2019

Thanksgiving has become a holiday where we, my pod of three, frequently find ourselves trying to figure out how and with whom we’ll celebrate.  For a number of years we joined extended family for a chaotic feast, but it wound up not being quite right so we hosted a couple of dinners ourselves, inviting other families and friends who were similarly without plans.  We’ve been invited to share with the clan of a close friend several times, a dinner that was always warm, festive, and full of great conversation and cheer.  The clan has since grown considerably so the dinner is now relegated to clan only, which seems right.  Last year we again hosted with a couple of families, one of which was transitioning via a divorce and in need of a new experience to help get through the holidays.  And this year, we’ll be sharing with them and their extended family as guests – though they’re as close to us as family comes – in what may be their new tradition.

Thanksgiving is likely my favorite holiday when it’s well celebrated.  It’s a time of year where we tend to reflect on things that are important and where the best part of the festivities is simply spending quality time with those we hold dear, sharing a glorious meal, laughter, gratitude, and care.  The celebration can languish over wine and conversation, or move to game playing like our dinner last year, leaving bellies full and souls sated.  In my mind, it’s the perfect dinner party…

This year particularly I’m counting my blessings as we are all gearing up for Cole’s surgery next week.  My nerves are right at the surface, so I’ll be spending some of the long weekend preparing the house and freezer for our week at the hospital, and then those first few days home when we’re getting our bearings in terms of caring for Cole and his new back.  We work well once we figure out the best routine so I know it will get easier as we settle home.

I plan to decorate Cole’s room with heaps of holiday decorations so it feels festive and Christmasy.  It’s likely he’s going to miss his favorite holiday celebration, Christmas Eve dinner at his uncle’s house.  The two share a love of Christmas and my brother puts on a wonderful Christmas Eve celebration every year that Cole looks forward to and adores more than anything in the world.  I want to transform his room into a winter wonderland while he’s still in hospital.  It breaks my heart that he’ll miss it this year so I feel compelled to create some new holiday cheer for him to make up for it just a little.

I’m grateful to have a tribe of friends and family who will be around to support Cole, Dan and I through this.

Happy Thanksgiving to you and yours!  I hope you’re festivities are full of love and joy!

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.

 

COMMUNICATION BREAKDOWN (Led Zeppelin)
November 12, 2019

Twenty something years of being together and I’m realizing that my husband and I have some serious communication issues.  Instead of developing a shorthand, instinctual and deeper sense of understanding one another, as couples are apt to do after being together for so long, we seem to be doing the opposite and it’s causing hurt, frustration and distance.

He thinks I treat him disrespectfully, with responses that are mostly piss and vinegar.  I think he takes things too personally.  My being frustrated when I get home from a long day at work, spend three of those hours in stop and go traffic each day, needing just a few minutes of down time to transition to being home and taking a breath, is not a sign that I’m not happy to see him or that I see him as the cause of my angst.  I’m simply not always able to burst through the door, offering smiles and kisses the second I get out of the car.  It’s absolutely nothing personal.

I’m not always kind.  I know this of myself and I’m not proud of it.  I work hard to try to be better but I think the unfortunate nature of marriage or relationships is that we have a tendency to take things out on the people closest to us.  Part of that is simply proximity.  Part of it is a sense of trust – people we love can see us at our worst and still love us.  Part of that is a belief – however wrong it may be – that they know they’re not the root of the anger and frustration just the dumping ground.  I’ve come to understand that these theories are not actually true.  Particularly in the case of my relationship, the latter.

I’m not sure how one goes about changing patterns and habits that are well established from childhood.  I suppose the fact that I can admit to or have awareness of my behaviors is the first step, though I struggle to get past that one step.  I also feel like I can’t be the only one stepping.  I can take responsibility for my words and my actions but I cannot influence how they are heard or taken.  I can’t change someone’s expectation or anticipation of my presence.

The nature of our communication is stunted in some ways because we are almost never together without Cole present as well.  it’s hard to have adult conversation, or even complete conversations about anything without him being there and often not pleased about us talking to one another or the feeling that a particular conversation may not be best had in front of him (like discussing our concerns about his upcoming surgery or my husband’s travels or a night out).  It’s not natural and we rarely pick any of those conversations back up because we’re almost never alone, just the two of us in a room when we can have real conversations.

Anyone else have communication issues?  Any thoughts on how to improve things?

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I recently heard about a colleague’s attempt to do so by having a night a week where she and her husband turn off electronics and spend the evening playing a game and talking, be it cards, Yahtzee, or whatever.  She says it’s done wonders in terms of them appreciating one another more…A fun idea that sounds worth the try!

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

STAY UP LATE (Talking Heads)
November 6, 2019

I’ve been solo-parenting quite a lot these past couple of months as it’s one of my husband’s big travel seasons.  He’s been jetting from conference to conference with just a couple of days home between.  The biggest burden for me is the push to leave early on work days in order to get home before Cole’s bus returns around 4pm.  When home, my husband is usually the bus greeter because he has a flexible schedule and works just twenty minutes from home. I work in Santa Monica, which on a good day is an hour drive and on a bad one up to two hours (truly, just to go nine miles!!).  I digress…I could bitch about traffic and rude, unkind drivers for days even though I try very hard to be zen about the commute!

So other than the pressure to get home for the bus, and missing my husband, I kind of love having the time alone with Cole.  We start each day with 5:30 cuddles while he has his breakfast, and then plot out the day while getting him dressed and ready for the bus.  He leaves laughing and happy and I sneak in a little exercise, coffee, shower and head out to the office.  When the bus returns I get to learn about his day, give him a shower (which now includes a shave or two each week!), and then hang out with him until dinner and bedtime.  We talk to his dad, sometimes to a grandparent or two and watch some of our favorite shows (Ellen, Modern Family repeats, baking competitions, Queen Eye) and then bed, sometimes later than we should.  On weekends it’s baseball, dance class, time with friends – sometimes mine, sometimes his, errands, cooking and more hanging out and staying up later than we should.  It’s relaxing, not wildly exciting, but completely soul filling.

I’m not suggesting it’s better than when we’re all together, it’s just special because I don’t usually have the afternoons with him and I don’t necessarily do all of the weekend stuff every weekend when there are two of us to split things up.  Being on our own, just the two of us, taking care of each other while his dad is away, brings us closer.  It allows us to just sink into our own routines that I think help him to deal with his dad being away.  If everything were just the same, it would be harder on him.  He loves his routines with his dad and definitely prefers some of them to me – like showering and shaving – but by approaching the afternoons with our own routine, it helps to not miss that it’s not what he does with his dad.  In Cole’s world, there are certain things that require a specific parent whenever possible.

As much as I love our family three, I’ve come to embrace and even need the occasional times when it’s just me and the boy…

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IT’S MY LIFE (Jon Bon Jovi)
September 19, 2018

Sometimes I marvel at the things I know about because Cole is my son.  While it’s now all old hat to us, we had an extra learning curve beyond simply being new parents, when he came into our world. We had all of the usual stuff and then all of the medical and therapeutic interventions to contend with, as well as quick introductions to agencies and supports and special education. And of course, random weird things that come into our life.

In case you don’t know, Cole is fed through a g-tube.  The only way we could leave the NICU, after five long weeks, was to have a g-tube inserted because he was not able to suck a bottle or boob.  We had hoped he would catch on when we got him home but seventeen years later he’s still tube fed.

Yesterday I was placing an order for his feeding supplies, which typically includes his formula, gravity flow bags and every other month a new mickey-button (the part that actually is inserted into his belly and held by a little tiny balloon that holds 5 cc’s of water).  I was asked what size, because they like to have you repeat every detail of the order, your contact details and lots of details about Cole EVERY time you call to place a monthly order to make sure you are who you say you are and are ordering supplies for who you say you are ordering supplies for – I’m assuming because there’s a huge black market demand for formula and mickey-buttons.  Anyway, I digress.  I give the size, 16 French, and it occurs to me that I would never know what that means if not for Cole.

Tubing, often catheters and feeding tubing, is designated by French or “Fr” to note the size of the tubing. It’s a French scale where every millimeter is multiplied by .33 (Fun Fact: The French are fond of the number “3” – I deal with withholding tax at work and the France to US withholding tax is 33.33%), so Cole’s tube is 16Fr multiplied by .33, making it 5.28 millimeters wide.  Pretty small.

In the years of parenting Cole, we have had to deal with some many different therapists, agencies, doctors and medical interventions.  He’s had surgeries and treatments that exposed us to so many new adventures.  When he was still small enough to be tucked in to a Baby Bjorn, he did acupuncture to help open his brain flow.  I’d wear him and spend the whole time trying to keep him from puncturing me once his head was full of needles!  He did botox in his hips and arms before it became mainstream for faces, he had his back and neck muscles supported with Japanese kinesio tape before it was available in the US, and now gets Watsu (aquatic Shiatsu) massage when he does aquatic therapy.  I’m actually going to take a two day Watsu training class next weekend so I can take advantage of our pool and support his aquatic therapy at home too.

Being his mom keeps me on my toes and keeps me expanding my knowledge and researching every little potential interest, development, resource, product, therapy, intervention that I hear about related to cerebral palsy, communication, inclusion, education, life as an adult with special needs, etc.  I’m sure I miss a lot but thankfully I have a community of moms who all do the same and we share.  It’s a unique experience that thankfully we share with a welcoming wonderful community of likewise unique families.

 

INNOCENT
December 15, 2015

Cole didn’t go to school today. Apparently there was a credible bomb threat in our school district, which caused LAUSD to cancel school for 640,000 students at 7:15 this morning. Insanity.

My instinct is that it was some sort of prank. A New York school district received the same threat during school hours and opted to keep the kids in school. I’m not sure if they have faster sources of verification in place following 911, or why they made the decision but all seems to be well on that end.

Nothing happened here in Los Angeles either. It was likely a distraction of sorts. The logistics of keeping 640,000 kids home are enough to cause some relative chaos in a community. That in itself is problematic, though certainly not life threatening.

Coming on the heels of the San Bernadino tragedy, I don’t think LAUSD had any other option but to pay heed to the threats. They pointed out that they receive daily threats, which are not acted upon, so something must have been more concerning with the threat today.

I can’t fathom who would target schools and children. It breaks all of the ethical rules of war, of humanity. I know terrorism is meant to do so but even terrorists are human, and as we learned from San Bernadino, they sometimes have children.

That level of belief that leads one to take lives in the name of whatever the motivation confounds me. Perhaps I’m naïve, but that means of action does little to earn support or change. In simplest terms, it provokes good to rise over evil. People being shot at a Planned Parenthood doesn’t make us turn and think “Oh, yes, that’s the way to express a point. Now I see what you’re trying to say.” No, that just doesn’t happen.

Having to explain to your child that school is closed because someone made bomb threats at schools is not a conversation 640,000 of us wanted to have today. Our children lost a little of their innocence today.