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.
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.
Maddy entered her fourteen-year-old’s bedroom, bracing herself for what she might find. When she opened the door to his room, she was aghast.
“How do you plan to complete this?” she asked looking at the clothes on the floor, and the dirty windows of her son’s bedroom smeared with finger smudges.
“I’m not sure yet,” he said, thinking he should probably give her an answer so that she can go away.
“I want a plan of some sort because otherwise I know you’ll forget to get it done. Besides, it’s a good idea for someone else to know what your basic plan is so that you can be held accountable for what you plan to do, and it helps you to have someone keeping you focused.”
“Ummm….I hadn’t really thought about it.”
“Well, what about setting an alarm or a timer to give you a chance to think about possible ideas?” Her hands were moving to her hips as if her arms were getting too tired to be at her side or she was having trouble standing straight (possibly losing her focus).
“I don’t know. I do know that I have to be finished with everything before the end of the month. Can you leave me alone now. Let me think about it. I promise, I’ll come up with a plan. I’ll get it done.”
“I don’t think I should leave here until you give me some sort of idea about how you plan to complete your room cleanup.”
“ I’ll use the Windex, I’ll take the laundry to the garage. I’ll change my bed and I’ll take out my bottles of Gatorade.”
“That’s not everything that needs to be done, but it is a good start.” She watched him pulling at his hair from the front toward the back. He kept looking at the computer, watching for something.
“Who are you waiting to see?” she asked, thinking it might be his friend, Asia.
“Do you have to pay any money?” hoping her son hadn’t started gambling. Her grandmother was always found at the local gambling hall, but seemed to have control over her spending. There were rumors that she spent much if not all of her save for a rainy day cash on Bingo.
“No, I just have to be there when Asia and them sign in.”
“I really think you should focus on getting your work finished first, then focus on that. Wouldn’t it make more sense to you?”
“No.”
“It makes more sense, really, because you learn to plan your time better and make sure you have all the work completed and out of the way.”
“No, I don’t think so.”
“When you learn to do the work first, then play; you value your time better because when you become an adult, the work has to be done first.”
“Well, I’m still a kid. I think I value my time and will do the work when it is time to do the work. You’ve seen me. I always do my work.”
“I want you to get your work done first, then play. I see it too often, you playing then never getting to the work you are supposed to have done already.”
“No, that’s not true.”
“It is true. I noticed, when you start on the games first, you don’t stop to take care of other things.”
“That’s not true. I get my other things done.”
“Not without me repeating over and over again. I need you to complete these things now.”
“I will. Just leave me alone and I’ll get my stuff done.”
“But you’re going to play and the clothes will still be on the floor, the trash will still be scattered about the room and your bed wont’ be changed, which will make things smell very badly in here.”
“No it won’t.”
“Why is it that no matter what I suggest or tell you that needs to be done, there is always a contradiction from you?”
“What do you mean?”
“You know what I mean. Why is it so hard for you to say, ‘Sorry, mom. Okay, mom, I’ll do it.’”
“Okay, mom. Can you go now?”
She walked back into the kitchen, noticing the mess of dishes in the sink she started but hadn’t finished, and resumed her task. Her identity wrapped up in her daily routine without excitement except when it couldn’t be completed because of complication or need to care for her youngest son due to a home health nurse not arriving. She took a deep breath to drive back some crazy tears wanting to surface while sudsing the plate.
It was quiet. Her son, Lou wasn’t his noisy self. She suddenly put the plate down to check on him. Sometimes the seizures prevented consistency in the routine schedule, which made the calm schedules a welcoming comfort. Lou was in his wheelchair, his body slumped to the side, his hand touching the floor. She grabbed a short stool with wheels and lifted his body into her lap, carefully caressing his face with her hands. She reached for the nearest earlobe and pinched it. Nothing. His eyes kept shaking side to side in his sockets. She pinched his earlobe again, this time harder. His body resumed its liveliness. She checked her watch; thirty seconds from when she noticed his body limp. How long was this going on before she tuned in? She inhaled as deep as she could and talked to her son.
“Hey Lou!” she said with forced excitement. “Welcome back, buddy. Where have you been? Next time, tell me where you’re going.” She kissed him on the forehead. He looked at her and smiled as if her kiss was the magic to bring him into the present.
She fought the resurgence of tears pushing their way to the surface. A total circus she thought. How will we all survive?
*To Be Continued…..
About the blog
LynetteVillegas is a blog that documents the author’s journey through life. Don’t forget to follow me on:
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bible.com/bible/116/php.4.13.NLT
No matter how foggy my brain can be, I will continue to work on my goals; improving my writing, teaching and learning. Creating is essential to growth. As hard as seizing the time to sit and write may be some days. Each moment that I put pen to paper and shut my critic off, I make progress. Be content in the struggle.
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.
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 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.
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.
He did it. He made the face that sparks of orneriness and playful obstinance. He made the “O” face, as if to say, “Uh-oh, I’ve been caught so I need to play it up with the hope that no one will be mad”.
I haven’t seen that facial expression in almost four years. Then, he pushed himself back from the table using his feet. He’s ready to go. He wants to move on his own with incredible impact. Any attention he recieves, he smiles with great approval. He’s sensitive now. Traumatic Brain Injuries can feel euphoria and tears in the same moment depending upon what is happening around them and the individual’s support system.
My Lucho is lucky to have his family close at hand to assist him with what he is attempting. Although nonverbal and primarily gestural when he wants something, sign language may become a stronger form of communication for him. His consistent drive to move toward independence reminds me of how strong we need to be when our heart leads us toward our desires. He reminds me to persist and will my actions toward improvement and happiness.
Sincerity, simplicity and direct words are prized when you speak to me about love. While the words are sparely used, their direct effect causes my heart to sing. I want to hear more.
Speak to me in words that make me happy to be; happy to serve day and night, picking up socks, following after to keep the food fresh as I return to the fridge what you’ve taken out.
Speak to me simply saying how much you care; how important I am, how magnificent we are; and how wonderfully proud to have our children.
Speak to me softly, whisper in my ear how significant my actions help you, make you grow, and feel valued.
Speak to me respectfully, supporting my words by acknowledging my intelligent thoughts and analysis’ about our projects and plans.
Value me above all others, showing me through your actions and words each day that I make a difference to you.
Show me you care
Lovingly.
lynettevillegas 