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.
“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.
Lucho has improved incredibly through his rehabilitation since he acquired a traumatic brain injury in 2013. His hyperactivity is his strength because his drive to be mobile exceeds all other tasks he may attempt. He started attending public school this year on a part time basis, allowing him to be counted for attendance and receive his therapies and FAPE (Free Access to Public Education). I drive him to school so that his access to education isn’t taken up in transportation. In his class are other students unique like himself. There are currently nine students in his class when he attends. He started with five classmates. He has one teacher and an assistant in his classroom at all times. Each classmate requires direct attention for feeding, changing, comforting, moving and teaching. His classmates are nonverbal, just like him. If there is a problem, discomfort or seizure, he and his classmates depend upon the attentive eyes of the adults present. There are only two adults present everyday. Occasionally, there are three adults in the room.
Lucho and his classmates use wheelchairs to move around. Many of his classmates can not propel their own chair. Lucho learns and practices propelling his chair according to his immediate wants. Most often he will impulsively move his chair toward his immediate want. Currently, there are nine wheelchairs in a room with a size of 20’x23′. I asked if there is a limit or ratio of teacher to student for the school district. I was told there is not. This means that as more parents with medically fragile students need to work because there isn’t any other means to provide for their child, they will have to enroll their medically fragile child in school. While I am confident in the teacher and her assistant, who has almost thirty years experience, I have concern about the amount of students who may arrive due to economic circumstances and life as it happens.
When I discussed this with friends and family, my husband didn’t seem at all alarmed. He said, “All they have to do is call 911.” I thought on this. Yes, this is true, but given the development of children and my son’s hyperactivity and easy ability toward boredom, this may cause a problem for him and them.
When I picked him up from school the other day, I was informed that he couldn’t keep his hands to himself. He was pinching others. Oooh, I thought. This isn’t good. It’s not fair to the others because they can’t pull away from him. In a regular classroom, he would receive a time out. He did. In a regular classroom, the other children would have moved away from him or told the teacher. His classmates can’t do this.
I have to ask myself is this is fair to anyone? According to ed.gov:
” An “appropriate” component means that this education must be designed to meet the individual educational needs of the student as determined through appropriate evaluation and placement procedures. However, students with disabilities must be educated with students without disabilities to the maximum extent appropriate.” <https://www2.ed.gov/about/offices/list/ocr/frontpage/pro-students/issues/dis-issue03.html>
I agree with FAPE and its purpose, however, I wish it were clearer by stating a ratio of student to teacher. I fear that the natural events of the economy and legislature changes with Medicaid and Social Security will cause these small units to swell beyond what is appropriate. I fear that my son may express himself, which may or may not be appropriate because he will show his frustration regardless of what is considered appropriate student behavior.
My fear and concern is for my son’s teacher, who is given more and more students on her class roster. A person can only push two wheelchairs in the event of a fire alarm or a lock-down. If one teacher is given nine students in wheelchairs and one or two assistants to help with student care and teaching, how many students will be left without someone to take them to safety? And will the door already be open?
I hope that the school district will open another unit, rather than over-crowd an already existing medically fragile unit. It’s not FAPE and it’s not fair to over-crowd a classroom of medically fragile children who are in different stages of rehabilitation. How will annual growth happen to my child if he doesn’t have the academic and personal stimulation of a teacher to help him grow? I hope the school and the district will seek to be proactive toward a situation that will continue to grow. Legislators have a way of affecting others without realizing. I hope there will be more medically fragile classrooms within this school district so that medically fragile students can obtain FAPE without risk of neglect.
Under Title II, they have a rights to communication in ” related aids and services designed to meet the student’s individual educational needs as adequately as the needs of nondisabled students are met.” <https://www2.ed.gov/about/offices/list/ocr/504faq.html>. While this may mean additional assistants, it should include teachers and communication devices.
Service dogs are known for their incredible ability to stay focused with incredible self control. In an effort to advocate for my children and bring them the highest quality of life, I’ve answered my eldest son’s request to have a service dog. In my research, I encountered lots of costs regarding the aquisition of such a high caliber canine. It can cost anywhere up to $20,000. This is equal to the purchase of a car. I don’t intend to ride these canines. There must be another way because many programs suggest that the dog be purchased from another state or in another city, where one would have to train then bring the dog home. How does the application of the training work in your home environment if there is a need for different kind of training? Is it possible too, that training might be done closer to home? It occurred to me the sheriff department works with training dogs for service. Perhaps I could search there.
I was in the church thrift store, when my path crossed a service dog trainer. She relocated to help her dad because her mom passed on. She trains privately and has many years of experience. She told me that often the dog will choose you.
God works in strange ways at times, or, rather, God’s way is not man’s way. Becoming owners of two intelligent and energetic puppies was not what I thought was supposed to happen; however, each day has proven to be more and more his way. People are changing. Just the presence of the puppies and how they “naturally” read the needs of those around them shows me their paths were meant to cross ours. The “Furry Godmother”, as she calls herself, was part of God’s way to bring Angel and Daisy to us. Her teachings help to build my confidence in an area that is new to me. This journey I take will bring goodness and confidence to my children. They need the attention only a pup can give, especially after the trauma of our Angel’s accident. This four-legged Angel arrives to help heal. This Daisy comes to calm with her ability to monitor us, watching, making sure we’re together. Thank you Furry Godmother. You are God’s tool toward healing through His angels and daisies.
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.