Each day brings endless unknowns.
Each seizure brings more
anxiety and fear.
He shows his resilience,
He shows his innocence,
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 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.
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