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.