Category Archives: family
Living
He takes a deep breath, screaming
Birth.
Kicking, crying, claiming the air
Life.
Hands clenching at nothing, and everything within
Reach.
Feet kicking, pushing at air and obstacle
Movement.
His face turns left, then right seeking
Suckle.
Eyelids opening then closing, pinching against
Sleep.
New mother holds her human deep and breathing
Relax.
Her work complete
Rest.
Family Circus (continued)
It was Sunday. Maddie awoke to give her son his seizure medicine and couldn’t sleep. She sat at the east window and watched the sun rise. First the glow of grey turned into yellow, then the bright white. She got up and started the coffee. She should sleep but she can’t. Too many shortened nights of sleep made her feel like she had to keep going.
The house was quiet. She liked these moments best. It gave her peace. It made her feel like she could do what she wanted. She pulled out a book she had been reading for weeks. Her library let her borrow it again and again. She was close to finishing. She opened the book and began to read.
A distant beeping cut through her concentration. The pulse oximeter sounded, beeping through her pleasure. She waited. It continued. She blinked slowly, closed her book and walked to her son’s bedroom.
He was sitting up, facing the door when his body dropped into the bed as if he lost consciousness, then sat up again and laughed. Maddie checked her watch and began timing the seizure. He was having clustered seizures and began trembling, first on the right side of his body and moving onto the rest of his body. She grabbed the magnet to magically end this torrent. Nothing changed. His body continued trembling. She reached for his other medicine, her heart rate increased. She looked at her watch and noted the time. She tore the package and put the nasal spray inside his nostril and squeezed the contents.
His body stopped moving. His eyes closed and he remained peaceful. She looked at the clock again. She began to feel the tears climb. She let them come quiet down her cheeks. She wiped her eyes, then took a deep breath. She slumped into the rocking chair, closed her eyes and listened to the house noise.
Nothing. No one but herself was awake. Everyone slept. Alone again, she slept.
Caregiver
She pushed herself on a daily basis, not knowing how much more she could do for him. His condition limits quality of life for all who surround him. The routines felt numbing at times, their predictability endless. She wanted to earn her money from her efforts, but as a caregiver, there isn’t compensation. She’s told to take care of herself, but she isn’t paid for her services. How can she spend the money to care for herself when or take a nap or exercise if she is the caregiver?
January
Luchándolo
Each day brings endless unknowns.
Each seizure brings more
anxiety and fear.
He shows his resilience,
He shows his innocence,
Time unknown,
Life valued,
Love every moment.
Tristeza
Recent news; the school’s out for summer. What! it’s not May. We usually look forward to May and the finalizing of closing up classrooms and telling friends we have to meet during the summer so that the kiddos keep up the social contact.
Not anymore.
Not anymore of the playdates or pool parties or gaming nights, boys form of pajama party.
The past three weeks my teens are on their computers from 10 and until 10 pm. Claims of doing homework and schoolwork get slipped into unwanted tabs along with their screens. When I sneak up to check the screen tabs, there are always more tabs than seems necessary.
“Are you working on your schoolwork?”
“Yes, Mom.”
“Really? I’m going to check.”
“Okay. I’m doing it!”
“No, really! Why are your teachers calling and writing to me in emails if you were doing it?!”
“I don’t know…They like to bother me.”
This is truly an excuse to join the fifty percent dropouts in the county because Florida is a “right to work” state.
I’d like to think if I took the computer away, it would change them. I’d like to think that this situation is temporary and a miracle vaccine will show up so that there will be no more threat to all human life by sneezing, coughing or touching. But this nightmare to get my sons to realize that this working online is an incentive to make a better show of what they know and turn their grades into something so much more spectacular. They’re thrown off and seem like they’re trying to find a normal in all this.
I get it. I understand they’ve lost all contact with their friends. They don’t have extracurricular activities anymore, not to mention sports. They are upset at what life is throwing at them. It’s war, but there isn’t bloodshed like other wars of the past. Yet, people are dying.
It’s a scary world for them. No wonder they want to play computer games all day. No wonder they want to boost their emotions through cortisol. But the outcome will be harder and abstract until a new normal is established.
Meanwhile, I grab hold of my patience tighter than my tolerance for the hormonal whiplash that arrives every morning. I give them love through the Mom acts of favorite muffins and new activities such as learn a card game, hoping they’ll grab hold of the lifeline they need to swim through these chaotic waters.
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.
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.
Imagination
As I drove my son to school this morning, my mind began to wander to the memories of two years ago. In a rush, the feeling of a gravel sea tossing and turning us around in a storm pricked my sentiments. I checked my son in the rear view mirror. His smile causing me to imagine the Grace of Angels. My hands held the steering wheel a little tighter as we climbed steadily around and over the bridge that over-hung the Marina to our east. My eyes returned to the road. Taking a deeper breath than usual, I pushed the memories back again.
After passing the area where our accident took place two years ago, my imagination prevailed in creating a stable, normal sense of daily interactions. We are fortunate to be able to continue with our imaginable daily routine. We are fortunate to imagine faith, safety and grace. I have rosaries in my vehicle. My imagination helps me to see the symbol of power of faithful protection. While I am still plagued by the memories of that tempestuous event that nearly destroyed us, my imagination empowers me to strive for tranquility.
Brilliant
“I hold to the wonders he has done, his miracles, and the judgements he pronounced. ” (Paraphrased from Psalm 105:5) I find this to be the most incredible coincidence….or not.
My son is attending school after four years of rehabilitation through the advocacy of his mother. While he attends a medically fragile classroom, he shows eagerness and joy to move closer and closer to his teacher’s classroom door where his friends are looking forward to seeing him. It’s 2018! Wow! He is shining. He is smiling. He is so happy to be.
His miracle reminds me it’s okay to be. Take the time to “smell life”, to cheer when the sun glistens on the river, bursting brilliant rays that chase the chill of the night.
lynettevillegas 