Category Archives: siblings, children, parents

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Family Circus

Maddy walked into 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?

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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.

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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.

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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