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 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
Sitting with my 8 year old disabled son on my lap as I listen to the solo performance of Breath of Heaven, I feel the tears fighting their way to the surface. I hold my son because the seizures seem to avoid him if he feels comfort from an embrace of love. The soloist’s voice carries my tears closer to the surface as I identify with the pain, struggle and loneliness of being a caregiver. I adjusted his shirt, his position, searching to slow my breath and keep the tears back.
As she sang, “I have traveled many moonless nights with a babe inside, and I wonder what I’ve done.” The truth broke through my wall of protection.”You’ve chosen me now, to carry (my son). Iam waiting, in a silent prayer, I am frightened by the load I bear. In a world as cold as stone. Must I walk this path alone? Be with me now. Be with me now.Breath of heaven hold me together.Be forever near me….” My tears rushed and broke my walls. I struggled to keep them under control.The words from the soloist’s song were so true. My role in caring for my son gives me the knowledge to know the nativity story at the most personal level.
I sat in the third row, clearly seen by the pastor, yet trying to hide my tears. The journey is so long, ardorous and without rest. My son’s full rehabilitation still not within sight. “Breath of heaven, lighten my darkness, pour over me your holiness. Breath of heaven”.
I continued to listen to the words and know them as my own; “Do you wonder as you watch my face, if a wiser one should have had my place? But I offer all I am for the mercy of your plan. Help me be strong, help me be, help me.” I couldn’t slow the tears because it was all true. The pain, the wonder of my angel’s miracle is real too. He’s almost walking by himself. He wr
My middle son turned to me, seeing the tears and asked me what was wrong. I replied, “I have a headache.” He hugged me. My mood lifted. The soloist sang, “Breath of heaven, hold me together, be forever near me, breath of heaven”. My encouragement taken from the words of a song and my son’s embrace, I stopped the tears.
Not knowing a fellow parishener was watching, she came over to say, “You’re the best mother, I’ve ever seen. You care for him so well.”
While reading a familiar passage, I was reminded of how we seek to make things new:
I have suffered the loss of all things, and count them as rubbish, that I may gain Christ. -Phillipians 3:8
It hit me in a new way. My Angel is being restored, but not because I insist it to happen, though it is the greatest desire of my heart, but because my prayerful plea was answered two and a half years ago. Restoration has many levels of meaning and can be used symbolically for spiritual as well as concrete purposes. This restoration doesn’t mean that the same will come again. When we restore a place or thing, the original state or existence is not there, except in a resemblance of what it was. He is not the same. He is changed. Yet, glimpses of who he was shine and delight everyone. Nothing and no one is left untouched. My Angel restores gladness and joy with everlasting affects, just as he is being restored through our loving care.
Christians believe in the correlation of Christ, who renews us through His loss of life and resurrection. Even He was restored! How wonderful to see the spiritual meet concrete. With this reflection, I feel better about working tirelessly, watching him through the nights, knowing tomorrow brings more restoration.
Laying so still, I miss hearing you laugh, spit, sing. I miss hearing you play your harmonica while your brothers share a tune. Your spirit your drive; your zest for life. It fills me each, everyday. Remember how you would sit on your belly in the living room, watching the trains go around and around. You watched so closely, your eyes level with the tracks. When your brothers trumpet and fiddle, you love your harmonica and wistfully move while playing. Your delight is in one’s laughter. Your pleasure in one’s company. You see beauty in everyone, nature, life. Your excitement when you see a car, a bus.
Every morning we sing, “It’ll be coming round the mountain when it comes, It’ll be coming round the mountain when it comes…” Then we cup our hands to our ears, listening for your school bus to arrive. Every day you see it turn the corner, your eyes rise wide with surprise, shouting, “BUS!” As if our singing is making it happen. As we cross to board your favorite ride, you stop and put your hand upon the safety lights at the steps of the bus entrance, transfixed, unable to move. Distracted you climb the steps, turning to blow kisses then move toward your seat at the window.
Almost gone, that tragic Monday, your zest and vigor for freedom to run, turned to tragedy as a mother’s worst fear unfolded with a pop and your body motionless on the road. I pleaded your return and heaven answered me. God provided all the right people at the right place at the exact moment so that you may return to fulfill a higher calling.