“The deeper that sorrow carves into your being, the more joy you can contain.”- Khalil Gibrahn

When did my life becomes so utterly joyless? When did I stop dreaming of a better life for us both? Why has it gotten so hard, when I've been trying so hard? My pregnancy was rough, my son was malnourished in utero, no matter how much I ate; he just wasn't able to get what he needed. It was like he was sipping as hard as he could through a little double-sided coffee stirrer. I thought it would get easier when he was born. As soon as I stopped breastfeeding, he got sick. Ear infections, stomach bugs that turned into rotovirus, that took us to seizures, high fevers, asthma, respiratory infection after respiratory infection. Other kids got a cold; Ethan got...pneumonia in August. Then his head exploded in size. Cat scan, neurofibromatosis, he was going to grow tumors all over his body from birthmarks until he lost speech, hearing, sight, life. Except...he didn't have any birthmarks, this can't be right. MRI- missing half of his cerebellum. Don't know why. Just the way he is. Love him. Developmental delays. Speech, motor, walking like he's drunk.

The daycare would page me at work over the speakers: "Sam, your son needs stitches. Pick up line 2100." "again?!" my coworkers would exclaim.

Boston Children’s hospital brain malformation group. Don’t know what happened, but it's over, nothing to be done...except genetic testing for these rare conditions. Okay. List in hand; I dragged my poor babe to specialist after specialist only to find...nothing. Metabolism off. Developmental delay. PDD-NOS Pervasive Developmental Disorder Not Otherwise specified. In other words, we have no idea what's wrong with your kid, but something is. 70 appointments plus in one year. And at the end of the year? No better. '

Screw this; this is no way to grow up. "If he has whatever XYZ disorder you think he might, what can you do?" I asked one day. "Nothing, really." Doctors said. Well then, this is stupid. Blood draw after blood draw, sedating him for brain imaging, rubber cementing electrodes to his head. I told him he was bionic. Slapped a bandana on his head and pretended like this was perfectly normal. The same arms he seeks out for comfort, to make everything okay, are the same arms that hold him down to rub acetone, nail polish remover on his head to remove the electrodes. Nothing conclusive.

When I was pregnant I promised him I would get my shit together. I would finish my bachelor's, buy us a house with a yard, get a fence and a dog.

Three and a half years later I emerged with my bachelor's in business with a 3.8 GPA, bought a two family and put in a fence. I cried when Joe installed the fence. Stoic through graduation, the house closing, I wept tears on my back porch as Joe ripped through the tangle of overgrowth to install a pretty ugly chain link fence. Why are you crying? I just... I promised my son I would do this, and now I have. All that's missing is the dog.

I moved from a great non-profit job empowering parents to go back to school, save money, buy houses, get better jobs, help their children learn, I tried to help them chase their dreams. I believed in them. I built a very successful popular program and parents took what served them and did incredible things, and thanked me. "Me? I didn't do anything, you did it all. "

I moved on to a job in business and thrived, got employee of the year after four months. I was happy. Working hard, tired but making it. Finally, it looked as though I was achieving stability. With the help of my family and friends, we renovated one flat and I got fantastic tenants. Ethan did well enough in school. I coordinated a team of 10-20 professionals to make sure I was doing everything possible to ensure his success. I took him off all meds and put him in a school that while not the most academically oriented, was very diverse and close-knit. His asthma disappeared. He was happy, had friends, was well-liked. He barely missed any school in the last year, no longer sick at least one day a week. He bounced from speech to OT , to PT, evermore professionals in my life telling me how I could help him. Blow bubbles, brush his skin to teach him sensory integration, read to him, help him with speech, learn sign language. 150 signs later, he finally spoke well enough to be understood and the delicious but claustrophobic relationship of being the only person to drag him through medical trauma after medical trauma, the only person who could understand him and communicate with him in sign regularly, ended. He was making his own way in the world and I was elated.

The economy tanked. 10 people were laid off over a few months. Wanting to keep me, my company eliminated my position and promoted me. I strived harder and harder.

And then I forgot my pin number...after three years of the same pin. And then I fell asleep while driving, so exhausted after 9 hours of sleep, a shower and a cup of coffee, that I fell asleep at a stop sign 2 blocks from our house, let my foot off the brake and hit the car in front of me. Then I couldn't recognize a family friend I'd known all my life. I began to forget things at work, conversations from five minutes before, work that needed to be done, projects I hadn't completed. I worked longer hours and fell asleep before my son. I started sleeping 15-20 hours on the weekends, unable to drag myself from sleep to spend time with my beamish boy, the only thing that truly mattered. 12 doctors told me it was all in my head. My periods stopped. The only time I felt well was when I was on antibiotics. They told me it was placebo effect that I believed they worked, so that's why I felt better on them and horrible off of them.

Finally an MRI on my brain as I turned into my son, could no longer multitask, was overwhelmed with the most mundane tasks, lost words, spaced out, walked into walls, faked my way through my work day, couldn't concentrate. I asked to be replaced. I was. I trained my replacement, feeling nothing but relief at the thought of a layoff, of the chance to rest.

Lesions on my brain. Demyelinating disease. Vitamin D deficiency- as severe as that of a 65 year old woman with osteoporosis. I went from training for a triathlon, biking 20-30 miles per week, running another 20-30, to being unable to walk a mile without crushing fatigue afterwards.

Lyme disease. I test negative. The tests are unreliable. Talked to an amazing specialist. She said that not only did I have lyme, but a coinfection of lyme and that I had had lyme a very long time. The stress had pushed me over the edge to symptomatic. She wouldn’t be surprised if my son’s neurological issues were caused by lyme. I thought she was nuts.

Overnight it seemed, I went from full-time school, 2-3 part time jobs and 70 appointments a year, renovating a flat at night and hanging out with my beautiful boy, playgrounds, parks, swimming lessons, pancakes, birthday parties, mountain biking, running, dancing with friends occasionally until dawn…to disability. Unable to clean my house because the steps are too overwhelming. Sleeping 15-20 hours every day. Incredible joint pain. Bell’s palsy. Trouble concentrating on anything, forgetting everything.

And here we are. In treatment, I am unable to keep up. Working so hard for self sufficiency, it is all slipping through my fingers and I can do nothing but confusedly watch helplessly, dumbfounded at my helplessness.

The regular docs tell me I’m depressed. I tell them, you would be too, if you lost your mind. Unable to function at all, I stumble through my days doing my best to shelter Ethan from the blows of his mother’s disease.

And Ethan has congenital lyme. In some ways it is a relief to know that it wasn’t that cup of coffee I snuck at 3 months pregnant, the green tea I drank, the antibiotics I took before I knew I was pregnant.

I may be able yet to treat him and pull him through the worst of this, to help him recover and reclaim a normal life. But, I have to make it through my treatment and his up against, family, friends, and doctors, all woefully well-intentioned and ill informed.

We will both get worse before we get better. For me this most likely means parkinson’s like tremors, almost complete loss of cognitive function, seizures, neurological symptoms of every kind. For Ethan this will mean…?

Proper treatment is upwards of $3000-5000 per month…for each of us, most of it not covered by insurance.

How will I ever make it through this and bring my beautiful boy out the other side?

I won’t. Unless I can visualize, smell, touch, taste hear and feel what the other side feels like.

So here goes:
Buena Vista social club playing throughout the house, sharpening the colors and family photos on the wall, the smell of delicious food warming the house. Friends surrounding us, dancing with Ethan. Poorer financially but incomparably richer in spirit. My boy’s brain released from his lyme prison, his words and carefree laugh lifting everyone around him. My soul repaired, infinitely wiser, but no worse for the wear. My infectious enthusiasm slowly returning, filling my veins. I know better than to believe that the world is perfect, that life is fair, but my soul is irrepressibly buoyant knowing that these food smells, warm hugs, dancing bodies and most importantly my boy’s voice found, make everything worth it. That for tonight, the world is exactly as it should be.

For I will have finally engraved into my soul, the words of Khalil Gibrahn.
“The deeper that sorrow carves into your being, the more joy you can contain.”

And I will never be able to forget. And from this journey forward I will no longer be naively joyous and enthusiastic, but joyous and enthusiastic because of everything we have endured and come to realize that everything I need is here, has always been here,, and that everything will work out. That I am exactly where I need to be.

That life is sweet. So how to get to that point? Halfway cognizant tonight, well.

Tommorrow I will make pancakes. And Love my boy, and tickle and make him laugh and play and be truly present and then Il will leave him with my most loving friends and go and see my friends and pretend that everything is okay, not to deny the sorrow, but so that I can lift my eyes to the beauty of all that surrounds me. .