Each day brings endless unknowns.
Each seizure brings more
anxiety and fear.
He shows his resilience,
He shows his innocence,
Love every moment.
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 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?”
“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.
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.
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.
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.
“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.
As a little girl, I had a pet cat, which came to be mine through my mom’s second marriage. I enjoyed this cat name Kid because it taught me responsibility and was so much fun to play. I taught it to do ‘jack-in-the-box’ and scare my brother. Kids was the firs pet to teach me responsibility. My affinity for cats lasted more than twenty years.
Every pet thereafter was a cat. When I went to teach in Colombia, I raised four kittens without their mother, when they were recently born and still without sight. I kept them in a box with soft towels, and a baby doll bottle to feed them milk, until they were old enough to go to new homes. I was their surrogate. I fell in love with one of the kittens and kept her for myself.
Cats were a successful pet for me. They were always easy to care for and easy to play with. Litter boxes and food left in their bowls allowed me the easy freedom of singleness. They would wait for my return, always happy to see me as they walked up to push against my pant leg. Cats allowed me the flexibility of caring as a parent with the not-yet ready for the responsibility of true parenthood.
Since my true inducement into parenthood, I’ve come to be the dog lady. I did have a puppy years ago, but failed at my attempt of diligence at being a parent to my puppy, Maxwell. I gave him away, but never forgot my inability to be diligent and learn how to be a good dog owner. I look back and feel as though it could have been different.
Now it is different. I have two dogs which were rescued through the sheriff’s program. I’ve become a dog lady instead of a cat lady. I find it interesting when I reflect on how things change and turn for our better development. While being a mom of three boys, I’ve learned much about being a diligent parent. Moms almost always make comparative notes with other moms to decide and measure one’s caliber as a parent.
With the arrival of our new pets, I learned from my failed experience with Max. I learned that I needed to be trained with my pets so that we could live harmoniously. If it weren’t for the cost, I’m sure there would be more training to learn on all parts. Now, not only am I finding that diligence doesn’t stop with children. It continues with the dogs. Because the cats are more “independent” in their nature, the dependence dogs have on their owners is almost synonymous to children and their mothers. Happily, as my boys grow into adolescence and on to adulthood, I have our four-legged friends to keep life happening. The boys are better attached than before Angel and Daisy.
Even though my boys are becoming more independent, my diligence in character and discipline continues. Now it extends beyond three boys to include two females. While working hard to form good citizens, I am working to form well-mannered pups. The continuity of parenting children and pups seems synonymous. Thankfully, practice makes perfect.
Lucho has improved incredibly through his rehabilitation since he acquired a traumatic brain injury in 2013. His hyperactivity is his strength because his drive to be mobile exceeds all other tasks he may attempt. He started attending public school this year on a part time basis, allowing him to be counted for attendance and receive his therapies and FAPE (Free Access to Public Education). I drive him to school so that his access to education isn’t taken up in transportation. In his class are other students unique like himself. There are currently nine students in his class when he attends. He started with five classmates. He has one teacher and an assistant in his classroom at all times. Each classmate requires direct attention for feeding, changing, comforting, moving and teaching. His classmates are nonverbal, just like him. If there is a problem, discomfort or seizure, he and his classmates depend upon the attentive eyes of the adults present. There are only two adults present everyday. Occasionally, there are three adults in the room.
Lucho and his classmates use wheelchairs to move around. Many of his classmates can not propel their own chair. Lucho learns and practices propelling his chair according to his immediate wants. Most often he will impulsively move his chair toward his immediate want. Currently, there are nine wheelchairs in a room with a size of 20’x23′. I asked if there is a limit or ratio of teacher to student for the school district. I was told there is not. This means that as more parents with medically fragile students need to work because there isn’t any other means to provide for their child, they will have to enroll their medically fragile child in school. While I am confident in the teacher and her assistant, who has almost thirty years experience, I have concern about the amount of students who may arrive due to economic circumstances and life as it happens.
When I discussed this with friends and family, my husband didn’t seem at all alarmed. He said, “All they have to do is call 911.” I thought on this. Yes, this is true, but given the development of children and my son’s hyperactivity and easy ability toward boredom, this may cause a problem for him and them.
When I picked him up from school the other day, I was informed that he couldn’t keep his hands to himself. He was pinching others. Oooh, I thought. This isn’t good. It’s not fair to the others because they can’t pull away from him. In a regular classroom, he would receive a time out. He did. In a regular classroom, the other children would have moved away from him or told the teacher. His classmates can’t do this.
I have to ask myself is this is fair to anyone? According to ed.gov:
” An “appropriate” component means that this education must be designed to meet the individual educational needs of the student as determined through appropriate evaluation and placement procedures. However, students with disabilities must be educated with students without disabilities to the maximum extent appropriate.” <https://www2.ed.gov/about/offices/list/ocr/frontpage/pro-students/issues/dis-issue03.html>
I agree with FAPE and its purpose, however, I wish it were clearer by stating a ratio of student to teacher. I fear that the natural events of the economy and legislature changes with Medicaid and Social Security will cause these small units to swell beyond what is appropriate. I fear that my son may express himself, which may or may not be appropriate because he will show his frustration regardless of what is considered appropriate student behavior.
My fear and concern is for my son’s teacher, who is given more and more students on her class roster. A person can only push two wheelchairs in the event of a fire alarm or a lock-down. If one teacher is given nine students in wheelchairs and one or two assistants to help with student care and teaching, how many students will be left without someone to take them to safety? And will the door already be open?
I hope that the school district will open another unit, rather than over-crowd an already existing medically fragile unit. It’s not FAPE and it’s not fair to over-crowd a classroom of medically fragile children who are in different stages of rehabilitation. How will annual growth happen to my child if he doesn’t have the academic and personal stimulation of a teacher to help him grow? I hope the school and the district will seek to be proactive toward a situation that will continue to grow. Legislators have a way of affecting others without realizing. I hope there will be more medically fragile classrooms within this school district so that medically fragile students can obtain FAPE without risk of neglect.
Under Title II, they have a rights to communication in ” related aids and services designed to meet the student’s individual educational needs as adequately as the needs of nondisabled students are met.” <https://www2.ed.gov/about/offices/list/ocr/504faq.html>. While this may mean additional assistants, it should include teachers and communication devices.
The angled cut of her white curles told of changing texture and managability. The slight looseness of her cheeks as she studied her reading with serious lips of concentration expressed more gravity than before. Her glasses made her brown eyes larger showing flecks of more hazel than brown. When she looked up from her reading, I saw a contentness-to-be in the moment.
As we drove back from church along the river, we noticed women of all ages out on the house porches and balconies or making their way to the bank to absorb the bright, cheerful, warm sunshine of the Sunday afternoon.
“Oh! What a glorious day!” she cheered.
“Memere. Look at that house there!” shouted Jay from the back seat.
“How wonderful!” she responded. “It’s very big!”
Reminiscent of the long-ago Sunday drives through the neighborhoods of big houses and big yards, green grass and beautiful lawn furniture I enjoyed as a young girl, the oohs and ahhs of another generation could be heard. While Sam slept because the winding of the road was making him woozy, we continued our ooohs and ahhhs, enjoying the designs and expressions of creativity of your own property. Years ago, the same conversation could be heard as I thought about the generations in the car. My boys, her grandsons, miles and miles apart came together to continue strenthening the connection of historical significance that each family strives for itself.
“Weee-eee–eee!” cheered Lou as we sloped over each hill and bump. I felt huge satisfaction as I listened to his expressions of happiness and his participation meant three generations made a stronger connection. We felt as though the many miles which exist didn’t make the distance in today’s daily living so vast. We were enjoying each other’s company. Our interactions made me feel as though there weren’t any distances between us, geographical or generational. Our emotions of happiness to be together surpassed any length of road.