I haven’t dreamed in three years. Tonight my extended family assisted with my nightly nursing, to allow me a chance to rest. I lay in the bed near her and Lucho, afraid to go too far away because of the uncertainty of his condition. I lay down, not feeling like sleep, but sensing that if I didn’t let her assist, I will create a wedge of disrespect for her desire to help. Although she may not be able to recognize a seizure if he had one, I planned for the hours he least has one so that all could be at ease and comfortable in our intentions.

As I waited for sleep, I sensed my eyes going black and the weight of my eyelids feeling as if they were going to slam shut. I was in a deep, dark void for much of the time, thinking how quickly the wave of sleep can hit a person regardless of intent. My dream had me at a park with people leisurely walking around. Few children were seen. Lucho was with me, but it was time for us to leave, and suddenly it seemed I had much to carry, including Lucho. He was young, maybe three or four, but for some reason, he was unable to walk. I wasn’t allowed to take him with me and had to leave him, while I tried to put things away in the car.

When I turned around to check on him, he was gone. I called and called, my mother’s panic rising. I thought I heard him and called again. I heard him say, “Dee-ah”. I thought, maybe his daddy picked him up, but when I called, he didn’t answer. Running with panic and fear, I called Lucho many times and ran closer to his response.

A man in his 60s was holding him. As he saw me approaching, he said, ” We found him this way.” I saw cuts on his arm, his head badly bruised, eye swollen and only his diaper left on him for clothes. I took Lucho from this man, who seemed to have rescued my baby, with caution in my eyes.

Upon waking, my heart raced and my breathing was erratic. I looked in on Lucho. He was laying in his bed, peacefully resting. Relieved my experience was only a dream, I lay down. The first dream in almost three years, I stopped to reflect on his progress and how long this journey has become. Dreams happen for a reason. They allow our deepest inner thoughts to communicate with our conscious self; the self that makes all kinds of decisions.

A comment I read several months or years ago still stands high in my mind. It reminds me that my job never ends and must continue if I want to see the best quality of life for my handicapped son. The comment goes like this: The quality of life for my child depends upon the level of my advocacy. If I am tired or weary his quality of life will reflect that.
I realize I cannot be tired. It doesn’t matter how many nights I have worked as his night nurse, watching for any seizure which may appear in a second’s notice by the rise of his body or the trembling of a hand. I must advocate for the best and with tireless energy.
This is true for all parents of children with disabilities. Each parent faces a new day of obstacles mixed with joyful pleasures of their child’s smile or embrace or glimmer of thanks for the help they receive.
Parents of children with disabilities face enormous tasks to complete aside from tasks required as caregiver. The largest one is maintaining the health insurance coverage and therapies to maintain and hopefully increase the muscular, cognitive and emotional progression of their child toward a better and productive existence.
Recent healthcare changes over the past two years have created a giant muck of mess that has caused many parents to repeat themselves and their actions toward consistency of therapies. My son, who suffers from a TBI had an interruption of rehabilitation due to mismanagement of accounts and services. His insurance was dropped for two months before the powers that be realized he was not to be dropped because he was insured since birth because of his Down’s Syndrome. It took insurance another month before his therapies could be approved, which set him back three months. Three months are critical when one needs to consider the “window of rehabilitation”. Now that he is finally “catching up” to the level of performance he was at prior to the loss of insurance and therapies, he faces a possible loss of therapies again due to poor management by the healthcare provider; quite possibly forcing him to travel at least one hour to a therapy because the county where he resides doesn’t see the value of pediatric rehabilitation.
This angers me, and many other parents, when the companies created for healthcare don’t demonstrate patient care nor do they uphold their mission: providing the best environment for patients to heal. My son needs therapies. He needs access to therapists. The pediatric therapists provide the environment and the skills to show him how to heal. When the healthcare provider takes them away because other patients may have better insurance, they take away my son’s quality of life and ability to become a productive citizen.

How does one approach a person of great intent but of unintentional malice? What to do? Our caregivers have our utmost respect and undefined trust, yet our trust gets tested. Doesn’t it? What to do? Several weeks if not months have passed where I was that trusted caregiver to my child, watching over him at night as I waited wary and ready for that sneaky seizure to appear all ugly and disconcerting. He trusts me to keep him safe as he sleeps, regardless. Oh, What to do!

I smell it. The tainted smell of e-vape with a hit of tobacco.” A lotion”, my husband called it. He said, “Es un locion. No hay problema. Ella es buena gente.” I agree, she is a good person, and she wouldn’t want to make a problem, however, I know what I smell. The rest of my house doesn’t smell this way. Why should this smell come from my son’s room? What makes it okay to vape? Is that even a word?

As I walk down to the end of the house where the kids are, I remember my days as a smoker; the urge, the desire to puff just once and make it a big one. I remember and I say to myself how much I used to love to sneak away to smoke. Puff and drag, drag and puff; never stopping for fear that someone would come and find us.

Well, the nose in my neighbors’ family said, “No.” So I went onto the Church Centers to see what kind of neightbors happen to vape. None,” said she. “Its just like smokin’.You have to inhale and you have to puff. I tried to ignore her comments.

He placed his hand on my mouth, waiting for me to blow those raspberries hard. As I blew into his hand, tickling with the vibration, I noticed his spread-eagle smile start to jiggle with a giggle. The lilt of his restrained laughter, encouraged me to do it again and again. How irresistibly cute. I continued to play this game and he continues his lilting laugh.

How miraculous this day is as we share our playful moments both quiet and loud at the same time. His laughter reminds me of hope and promise I received that night in the dark, hard road of blood and tar. A higher power has given me courage. A higher power has given him strength to fight. My lucho or luchodor, which means fighter in Spanish, is born of a higher power. As a child with Down’s, he is a friend forever. He touches and changes those who meet him and has a permanent effect on those who interact with him over time.

Lucho has Angel Power; power to heal, power to feel, power to make thankful hearts. He loves all, and makes you proud. His playful manner never ceases to amuse and lighten hearts. When his brothers come to him and say, “Good morning” or “Hi, Luis”, his heart and smile swell with overwhelming pleasure. They too, are touched by their own actions, because El Lucho has validated with a soaring smile of happiness to the heart.

The burning desire to write spills over and I think of all these great lines, ideas, plots or parts of plots. I go to write them down in my notebook…..hmm, hmm, what was that? and how did it go? Now why can’t I remember? Is it menopausal dementia? Or am I really day dreaming way too much? Then, when I’ve had a good moment of jotting something down so that I don’t lose the fantastic idea, an interruption occurs….I look at my half written sentence and pause to remember what I was thinking; its gone. I try back-tracking; gone. Gone are my sensational and vivacious ideas, that I sit, slump and cry.

Some how I will rise from this stinking dilemma. Some how, I’ll see myself writing fervently and fast. Some how I’ll ready for new assignments and bigger clients. Some how I’ll get all my stories on paper and published. I will hold strong to this dream.

Two years gone since that devastating day, which derailed and overturned my life and the lives of my family. He brings new meaning to determination, dedication and fulfillment. His smile calms me and makes me grateful for everything. I find I don’t complain, I take action. I’m an advocate now. His struggle is mine. He greets each day with the brightest of happiness. He is happy to be. When his brothers interact with him, he voices greatness of meaning and renews their importance to him. He walks with the assistance of others, but with the force and motion only known by those who will not be defeated. His chuckle brings contagious laughter and wellness to all who listen, as he lifts his hand showing the sign, I love you.

It seems I could be content where we are, but I’m not. I need to see you run. I need to see you roar, my little dinosaur. Your enthusiasm still peeps and peeks aggression. The excitement of being is sometimes too much to contain within you. The doctors are amazed. You’re a living, breathing anomaly. They smile with fulfillment because you give their passion meaning. Yet, they don’t have the answers. They don’t know how to stop your seizures. On those nights when I stand watch, I pray and ponder positively for a peaceful sleep. It seems the seizures sneak around and hide until you find a tranquil rest. Then they pounce, like a cat taunted by its prey. Sometimes, together we fight with song, comfort and positive feelings. Magnets and medicines don’t always work, but our connection to hope and the bond we’ve built through love, dedication and obstanance has made us strong, even though I need to be stronger still.

This anniversary is a marker. It’s a marker of our faithfulness to each other. Let us celebrate how far you have returned, but let us not stop here. Though the mountain continues to climb, we will rise.

Another night working toward the healing of my Lucho. The month of June is splattered with holes of zero night nursing, which falls on me to fulfill after spending the day recouping some sleep while a day nurse attends to the needs of my ever-miraculous boy. This is done while hoping my older children make positive choices while their exhausted mother tries to rejuvenate for another evening, watching my seizure laden child sleep in between moments of colonic-tonic nerve pain associated with a severe traumatic brain injury.

While I enjoy the moments of doing things I don’t normally get to do during the daylight hours, I’m overwhelmed at the amount of advocacy needed to bring him the best quality of life. This is contingent upon my success as an advocate. Do advocates sleep? Probably not the good ones. Advocating for someone with a traumatic brain injury requires a lot of research, asking questions, and finding support in a valley full of deathly thirst. His progress is the encouragement I hold onto as I find my way through this mess. Supports are critical in order to proceed toward more progress because there are so many moments of depressed attitude about his well=being.

It’s almost two years since that horrific day, which I wish to never remember, but can’t because of the fact that he is a living miracle, which my friends and neighbors don’t understand the level of commitment needed on a daily basis, with enormous amounts of enthusiasm, so that Lucho doesn’t feel depressed and unmotivated.