Tuesday, April 21, 2015

Time goes by so...so...slow...

Time goes by so fast. Enjoy it while it lasts!"

My heart hurts a little whenever I hear these words because I feel differently. As a parent, time moves so slowly to me. I must be the only person on the planet who feels this way, based on the number of times I have heard the above-mentioned platitude.

Why does time move so slowly? Because my 3-year-old son has developmental delays. 

Everyday I wait and worry.

I wait to see the next milestone. 

And I worry that he’s not there yet.

Ben's first hurdles were medical. He had surgeries and hospitalizations, countless doctors appointments, out-of-state consultations, medications, special formula. As these issues leveled out, we started observing more developmental concerns and had our state's early intervention program help us. Ben has come a long way with public and private therapy programs. He persists with sensory processing problems and speech and motor delays.

Ben's most pressing issue now is called "childhood apraxia of speech," or apraxia. 

It is like having a 1-year-old trapped in a (big) 3-year-old's body. 

He can't get his words out, despite knowing much of what is said to and around him. He has a neurological speech disorder. There is a disconnect in signals between the brain and the motor movements of the mouth. Ben is not stubborn or lazy or "just a boy" or "letting his sister talk for him," like many people like to advise me. This is not something just outgrown with time.

Apraxia is a conundrum. First of all, it is a diagnosis that a lot of speech therapists and doctors cannot easily diagnose because it does not have a universally accepted definition. Secondly, we don't know what causes apraxia. Finally, and most disappointingly, there is no standard, successful therapy for it.

If you aren't a speech therapist, you probably haven't heard of apraxia. I certainly hadn't, despite my medical training. It has been an interesting, grueling, maddening road at times. For the past 2 years, Ben has only gained a few new words each year. I think you can see why time has been extremely slow here. 

We made a difficult choice recently to start over with a new speech therapist and to increase therapy to 3 days per week. These sessions are often very hard for Ben and result in screaming and tears. He uses picture communication cards and a dedicated speech Ipad. We also have Ben enrolled in the school district's special education program, where he gets speech therapy as well as physical and occupational therapies. 

Living with apraxia is very difficult and a constant battle for me to keep pushing Ben beyond his comfort level in order to get progress. But not pushing TOO hard so as to create frustration and low self esteem. Life is obviously difficult for Ben, who just wants to communicate and play like every other kid. Having an apraxic brother is hard on big sis, who just wants to play with a normal kid. I am Ben's interpreter and the kids' referee. I am the 'mender of fences' and keep things as peaceful as possible. It is exhausting on a whole new level-even more so than residency call nights and ER night shifts! Probably because it is an unrelenting stress, with no days off.

I hope to be able to report more progress in the upcoming months...we are already starting to see some improving verbal skills as a result of our new therapist and ongoing commitment to his development. But I wanted to share about apraxia and spread the words about speech and language delays!

Big boy with his daddy

Sunday, March 22, 2015

About that picture....

This photo has been moving around the internet quickly. Apparently it is an emergency room doctor in Southern California, taking a moment to grieve after losing a young patient. The public has really taken an interest in this, highlighting the difficult job of emergency room doctors, EMTs and nurses who deal with this kind of heartbreak everyday. (Maybe every other day. Maybe a few times per month. Just depends.)

A picture says a thousand words...and this one says it all.

I know what this doctor is feeling here because I have been there too. I remember those tearful moments in bathrooms, call rooms, empty ambulance bays, and at home. You don't get the time or luxury to properly grieve and talk about your feelings. Nobody talks about this. It is just assumed with the job. 

You don't have the time to deal with it because you must return to a busy ER, filled to capacity with needy patients, and a large staff you must lead until the end of your shift. 

You don't have the luxury to grieve because usually your thoughts after a death are, "I have so much paperwork to do." "I have to tell the family." "Did I make a mistake?" "Did I document my actions and reasoning well enough so I don't get sued?" 

And so over time, you have to find coping mechanisms to get you from day-to-day. There is a desensitization that occurs when you see horrific things, over and over and over again. You become cynical and flippant. You throw your empathy overboard because it is extra weight on a sinking ship that must keep floating until the end of your shift....and until the end of your career. Death becomes commonplace.

Are doctors provided any kind of tools to deal with death? Courses, seminars or counseling? Not really. It is an on the job adaptation. I've seen a lot of after hour adaptations as well. Alcohol, substance abuse, risky behavior, etc. I've read about the rates of physician suicide in the US (400 physicians per year) and realize that our coping mechanisms just aren't good enough. 

I am glad this doctor took a time-out. I re-posted the picture because the subject is anonymous and it is done at a respectful distance. I hope it gives people some perspective about what ER staff have to deal with. I also hope doctors see it and remember that grieving is normal and necessary.  

Tuesday, February 17, 2015

SOMEDAY I'll be happy...

People ask me why I quit medicine. The short answer is, "I wasn't happy." Here is the longer answer:

No one is "happy" during residency. It is the most challenging (and perhaps demoralizing) time during a physician's training. The hours are long and the work is intense. You know it will be difficult but you also know that it will be over in a few years. I told myself I would happy after residency and would just have to stick with it. But a nagging voice in my head told me it wasn't just a tough residency that made me unhappy. Perhaps I chose the wrong program or wrong specialty. Maybe I should have taken time off. I still am not sure where exactly things went wrong.

I often think about the characteristics that help physicians get through so much school, through residency, and beyond. One of the key characteristics physicians have is the ability to delay gratification. We put so much time into our education because we know (think) it will be worth it in the end. We delay marriage, kids, and life in general so we can get through it. We also delay happiness, which can be very harmful and establish maladaptive living patterns.

And if we are so good at delaying happiness, will it actually ever set-in and happen? Or do we get so good at putting it off, that it remains elusive?

I saw my chance at happiness crumbling as I tearfully handed over my new baby to grandma so I could work a week of night shifts. I saw it crumbling when I missed out on those early milestones. I saw it crumbling as I heard those tears of protest as I left the door for work again...and again. It's the saga that many working moms understand. But it affected me deeply. I was supposed to be happy with this bundle of joy (that I desperately wanted) but I felt like I was even farther from my happiness goal. The puzzle pieces just weren't fitting. Even after residency was over, I knew I was out of place but wasn't sure where I was supposed to be.

When you get used to putting off your happiness, and delaying gratification, I think it sets up a neural network that is HARD to reverse. By the age of 30, I was used to putting in a lot of work in the present in order to get payouts later. I didn't live in the moment.  In fact, living in the moment is still a very difficult concept for my brain. I kept thinking that "someday" we would be happy. "Someday" we would go on vacations. "Someday" I could write. "Someday" I would take care of myself. "Someday" I would enjoy my kids. "Someday" I would have less stress.

But when you keep postponing until someday, it might never happen. I was so glad I had my daughter when I did and realized I needed to move in a new direction. It took a few years after residency, but I was fed up with thinking and planning for someday and never enjoying the journey. I was tired of asking, "how many miserable years do I have to put in to get some good years out?" Quitting clinical medicine was my eventual answer, made very clear after having a second child whose medical and special needs continue to overwhelm me. My career remains on the back-burner and I want to find a way to use my medical knowledge to help people. But my family needs me now, and I need them.

Me and baby E