I struggled with our relationship. We knew each other for fifteen years, lived together for six. His family had a staunchness that caused me to be frustrated. I like letting loose. I like to be impulsive. I like to dance. No one in this family danced. I felt an emptiness, an ache within that needed soothing. I looked at the classifieds. An ad read, “Teach in South America”. Ooh. I sense the ache within my being feel stronger. I answered the ad and received an interview.

As I walked to my interview, through the Boston Gardens, toward the Commons and Brownstones, I felt as if I entered the timeless classics, imagining how it was to walk through the crisp trimmed hedges and carefully step over cobble stone walks up the iron wrought steps to tap the brass knocker on the door. A woman in her 60’s greeted me at the door, so pleasant was her disposition and hospitality, I knew I might have a difficult time saying, “No” to her for almost anything.

She brought me down a long dark corridor to a round sitting area with a tv and vcr. I met her friends and colleagues. I was asked some questions about my flexibility, and “open-mindedness”. They showed me a video of the exciting things they do with the children every day and emphasized immersion of the English. “All students leave the school completely bilingual.”

Wow. I thought to myself. Imangine if the tables were turned. Could I learn Spanish in the same way. I was so impressed with the idea that a school existed in another land and their students graduate bilingual. I insisted on knowing more. My boyfriend of several years, with all my frustration was suddenly easier to manage.

“Hello Auntie!” I started. “I’m going to Colombia. It’s only for a year. I’ll be right back.”

“Isn’t that where the drugs come from?”

I countered her comment, “There is more than drugs in country.” I found myself ready to defend a country I didn’t know. The urge was strong. The desire to adventure my way across the globe and leave the staunch to see if I would be happy.

On the plane the anticipation baited me with extreme awareness and excitement to be alive and experiencing a different culture. Something within, the ache, felt at home in the sensual heat of Cali, Colombia.

He invited me to the town of his childhood and birth. I thought what a great way to travel this beautiful country, especially with a native speaker. I was still learning much of the language and already had an embarrassing moment or two. We were dating quite consistently regardless of our language differences. I came to Colombia to learn Spanish by living it because all other methods failed to make it a part of me. Guillermo was one among many eager to learn English. He set himself apart from the others with his piercing dark eyes, heavy but refine arched brow, strong Latin nose and disarming smile.

“Resilient people are not perfect, and they don’t always know what the hell they are doing.” – Angela Duckworth, PhD, psychology professor at University of Pennsylvania.

In my frustration and attempt to manage the barrage of criticism handed to me by my spouse before he left with the preteens for some outside fun and time together, tears flowed down my face and my son’s nurse pittied me. How angry I was. How insulted. How discouraged I’ve become. I’m criticized for my ways and different manner of discipline and parenting. I’m scrutinized for using logical consequences in my child rearing practices.

I’m outnumbered. I am surrounded by the crashing patterns of growing males that continue show they don’t understand what I say or choose not to. The curse? Is this God’s design? No, I won’t believe that.

While there is no nurse to watch my Epileptic son this night, I watch with the vigilence like only a mother can. I won’t give up, regardless of the sleep that tries to take over. Three plus years since that tradgic day and his purpose is clear. For me, he reminds me to rise, to stay strong, and push forward. He reminds me that we can still appreciate each other through smiles and laughter.

When we extend Lucho’s abilities by lifting him on top of his brothers, as if he were ‘king of the mountain’, the giggles of days before return to sooth and comfort the scarring pain that still lays heavy on our beings. I hold onto these moments because they make me stronger. Lucho’s magic is laughter in the midst of anger, frustration and disgust. While my frustration and anger remain within me like a nagging sore, Lucho turns and smiles, almost laughing at the noise of animation and liveliness of the emotions plucked like strings on a guitar, rising and falling in musical dissonance. With his laughter, he has control. He’s like a calming salve on a burn that won’t quit seething. His laughter helps me be resilient.

As I pulled the car onto the sandy parking space in our Enchanted Forest, Justin and I  climbed out of the car and let the breeze sweep over us. We walked toward the pond area and visitors station. Butterflies danced from flower to flower as the tree branches bowed in the breeze.

Justin stopped and stood still; looked around and said, ” Mummy there are butterflies. I think they are Monarchs.”  He watches their movements with much focus. While still looking with great attention, he declares, “They are Monarchs! Mummy, this place is filled with joy.”

Eager to start my sketch, I sat down on the nearest bench. Justin was pacing close by. He looked for his first sketch. He found it in a yellow daisy. I continued writing. Curious, he looks over my shoulder and asks, “Are you drawing?”

“Yes,” I replied.

“What are you drawing?”

“I’m drawing this moment,” I said.

“Oh,” he says,” I’m drawing this flower.”  While pointing with emphasis, he adds, “And this flower.”

“Let’s keep going, ” I suggest, hoping to recover my most recent fleeting thought.

While we drew in our unique ways, our hearts were happy. My delight in finding an activity both mother and son could benefit from put such value as I didn’t want it to end. I sat writing as quickly as the words came without corrections, when I noticed Justin wiping his forehead and adjusting his body position in the sun.

“Are you thirsty?” I interrupt.

“Yes,” he replied, “I want to get something to drink because I’m getting hot.”

“Okay. We’ll go home.”

“Mummy, look at my picture.” He points his sketch book toward me to see. The exaggeration and simplicity of his plants drawings were unusual for six year old. He truly has a talent.

“Wow. That’s beautiful.” And I smile.

“Let me see yours.” I show him my words on paper. “That’s not a picture.”

“Sure it is,” I counter. “I made a picture with words instead of lines in a drawing.”

“You should use a drawing,” he remarks, “It’s better.”

I haven’t dreamed in three years. Tonight my extended family assisted with my nightly nursing, to allow me a chance to rest. I lay in the bed near her and Lucho, afraid to go too far away because of the uncertainty of his condition. I lay down, not feeling like sleep, but sensing that if I didn’t let her assist, I will create a wedge of disrespect for her desire to help. Although she may not be able to recognize a seizure if he had one, I planned for the hours he least has one so that all could be at ease and comfortable in our intentions.

As I waited for sleep, I sensed my eyes going black and the weight of my eyelids feeling as if they were going to slam shut. I was in a deep, dark void for much of the time, thinking how quickly the wave of sleep can hit a person regardless of intent. My dream had me at a park with people leisurely walking around. Few children were seen. Lucho was with me, but it was time for us to leave, and suddenly it seemed I had much to carry, including Lucho. He was young, maybe three or four, but for some reason, he was unable to walk. I wasn’t allowed to take him with me and had to leave him, while I tried to put things away in the car.

When I turned around to check on him, he was gone. I called and called, my mother’s panic rising. I thought I heard him and called again. I heard him say, “Dee-ah”. I thought, maybe his daddy picked him up, but when I called, he didn’t answer. Running with panic and fear, I called Lucho many times and ran closer to his response.

A man in his 60s was holding him. As he saw me approaching, he said, ” We found him this way.” I saw cuts on his arm, his head badly bruised, eye swollen and only his diaper left on him for clothes. I took Lucho from this man, who seemed to have rescued my baby, with caution in my eyes.

Upon waking, my heart raced and my breathing was erratic. I looked in on Lucho. He was laying in his bed, peacefully resting. Relieved my experience was only a dream, I lay down. The first dream in almost three years, I stopped to reflect on his progress and how long this journey has become. Dreams happen for a reason. They allow our deepest inner thoughts to communicate with our conscious self; the self that makes all kinds of decisions.

A comment I read several months or years ago still stands high in my mind. It reminds me that my job never ends and must continue if I want to see the best quality of life for my handicapped son. The comment goes like this: The quality of life for my child depends upon the level of my advocacy. If I am tired or weary his quality of life will reflect that.
I realize I cannot be tired. It doesn’t matter how many nights I have worked as his night nurse, watching for any seizure which may appear in a second’s notice by the rise of his body or the trembling of a hand. I must advocate for the best and with tireless energy.
This is true for all parents of children with disabilities. Each parent faces a new day of obstacles mixed with joyful pleasures of their child’s smile or embrace or glimmer of thanks for the help they receive.
Parents of children with disabilities face enormous tasks to complete aside from tasks required as caregiver. The largest one is maintaining the health insurance coverage and therapies to maintain and hopefully increase the muscular, cognitive and emotional progression of their child toward a better and productive existence.
Recent healthcare changes over the past two years have created a giant muck of mess that has caused many parents to repeat themselves and their actions toward consistency of therapies. My son, who suffers from a TBI had an interruption of rehabilitation due to mismanagement of accounts and services. His insurance was dropped for two months before the powers that be realized he was not to be dropped because he was insured since birth because of his Down’s Syndrome. It took insurance another month before his therapies could be approved, which set him back three months. Three months are critical when one needs to consider the “window of rehabilitation”. Now that he is finally “catching up” to the level of performance he was at prior to the loss of insurance and therapies, he faces a possible loss of therapies again due to poor management by the healthcare provider; quite possibly forcing him to travel at least one hour to a therapy because the county where he resides doesn’t see the value of pediatric rehabilitation.
This angers me, and many other parents, when the companies created for healthcare don’t demonstrate patient care nor do they uphold their mission: providing the best environment for patients to heal. My son needs therapies. He needs access to therapists. The pediatric therapists provide the environment and the skills to show him how to heal. When the healthcare provider takes them away because other patients may have better insurance, they take away my son’s quality of life and ability to become a productive citizen.