Monthly Archives: March 2018

by

Captivating

Reflecting on the memories; I’m skipping along the dirt road where the speed limit couldn’t be any more than 5 mph because the bumps, dips, and rocks slowed any vehicle trying to travel faster with terrible shock repairs afterward. The trees seemed tall and grand. The brook talked playfully as the dragonflies dipped and soared around, catching food unseen. The sun would peek through the pines, warming my skin as I climbed the rocks to cross the brook, pretending to be an explorer in a strange land. I loved being outside, the air expanding my lungs and making them feel bigger than the usual breaths in the city.

Every weekend, I stayed with my grandparents, was a treasure to keep and sear in my mind forever. Mom had to work, so Mem and Pep stepped in to keep us safe and captivated in the surroundings they chose to use as their legacy. Like surrogate parents, they taught me and my brother all the responsibilities to share in a family. They loved to be outside. Sun Valley gave them the opportunity to establish solid memories and great times of fun and teaching with the element of laughter whenever warranted.

Campfires were one-of-a-kind because Harvey had a way with fire that called neighbors to come enjoy some fresh popcorn, beer and a game of cards on a chilly nights when the sun went to sleep. Watching him build each fire was like peeking into the process of a highly crafted artist, each stick and log in a specific place so that the oxygen could flow and give the fire its immense breath. How incredible! The colors he could bring out of the fire,  made it seem like a rainbow with lots of reds, yellows and orange, then blues, purples and greens as the embers could still kick up a burst if prompted in the right way.

Just like the fire’s smells and colors, the days and nights spent in Sun Valley held our attention and our youth. These memories help me to see how camping and living with Mem and Pep on weekends, or whenever my mom had to work, pulled and formed me to become who I am and the pleasurable moments being outside can do.

by

Finding Strength

My son looks at me from under his glasses as he sets his head all the way back on his lower shoulders. I tilt my head and ask, “Is that comfortable or are you stuck?” He often does this when his medicines are full force or he is tired or bored. Sometimes I see him staring off into space, eyes darting from side to side. Sometimes they go faster, sometimes a steady side to side movement with nothing to focus on. I sit and watch his eyes pick up speed, while the drool comes dripping from his mouth. I pick up the magnet and hold it to the left side of his chest for a few seconds. He coughs and continues to cough for a minute. The Vegas Nerve Stimulator in his chest has sent a message to his brain, stopping the production of Gabba chemicals making the incessant seizures he experiences on a daily basis.

This is my life on a daily basis, with little change except that the seizures may be faster than I am able to combat with the magnet. Many of his seizures are flickers of impulse, a momentary daze, or a tremor in his arm or leg, or a sudden nod of the head for no reason. My nerves are fried; or desensitized by the effect of these seizures that they almost appear to be ticks. Lennox-Gastaut Syndrome is my worst enemy. Yet, I struggle to maintain a battle against the-hardest-to-treat-form of Epilepsy.

Where do I find my strength? My husband continues to shower love and affection on his “baby boy”. When he comes home for lunch or from work, our son drops whatever is happening and spins his wheel chair around or scoots his way across the floor to his Daddy. Joyful, happy vocals come from him as Daddy will sing his favorite song and clap with him.

When my other sons, sit with Lucho on the sofa while I get his seizure medicine so that he doesn’t fall, and I see them playing and sharing time together, I smile, giving thanks that I have children who are loving toward each other. It encourages me to see the positive interactions because I know that not every disabled child has siblings like he does.

When Lucho smiles at me from over his glasses, I feel stronger because his determination to love and be loved is his primary goal, each and every day. I see the angel in him. I see heaven’s extension of grace and glory because he is driven to continue to smile, laugh and  play.20171228_094739.jpg