Nurses

I’m thankful for many of the individuals who accepted the position of caring for my Lucho. While he is endearing, lovable and playful, his antics frustrate the most patient person on the planet. Even though he has a traumatic brain injury, he isn’t slow by any means. His grasp can swoop in and carry the least suspecting object with a reach that over-extends to lengths like Inspector Gadget. A cup or bowl perceived as out-of-reach becomes airborne within seconds of a blinking eye.

He gathers more speed and direction with each day and progresses in his therapies. I watch as he throws each bean bag with unyielding accuracy while the swing moves back and forth, then side to side. It amazes me how he performs so spontaneously. This spontaneity makes him so much fun, yet so disarming. It’s easy to fall into his playful antics and let your guard down, only to find you are scrambling to save him from a fall. The sudden sound of “scuh-thump” causing me to visually pinpoint where he is as instantly as the “scuh” sound reaches my ears. Then, there he is sitting on the floor with bewilderment as he looks to his right then to his left and wonder how he moved and what did he do.

His Nystagmus prevents him from having good depth perception. He has difficulty knowing where something is because it seems to move on him. Then the distance of the objects are not as they appear. Not only do they seem to move, but the drop from the table seems to baffle him. How did his toys suddenly drop out of sight? How did the floor come up to greet him so quickly? This condition combined with his traumatic brain injury and epilepsy make for a hodgepodge of challenges unseen until the effects have already hit.

Nurses face hidden challenges with Lucho. I’ve heard nurses say, “You never know with him. He is always full of surprises.” Often times, and now more often, the nurses are surprised at my lack of response or astonishment at the speed in which events can turn with him. I’ve had nine years of his unpredictable behavior. I’ve become somewhat desensitized. However, this is not the case for the many nurses who come into our house never knowing what adventure lies waiting for them with Lucho’s care.

Thankfully, most have a good sense of humor. Others have none. Unfortunately, they suffer. While feeding him, they sit on his right with the intent to prevent any food from flying. He eats with his right hand. This hand is more dominant due to the injury.  Not having a faster reflex than Lucho, they wear the oatmeal or the apple juice despite their positive intents. Because of this, the nurses who enjoy the adventure which awaits within my home each day, request that they keep some uniforms stored in his room’ just in case. That’s the way good caregivers and nurses approach Lucho.

There’s a saying prevention is nine tenths of safety. I try to teach the new nurses that strategy is necessary when caring for him. I can only model my strategies. Everyone has different forms of strategy, however, the experienced individuals manage to anticipate his actions of spontaneity better. These are the nurses who stay at least one year. These are the caregivers closest to my heart. I am so thankful for their endurance and sense of adventure.

 

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Holding the Spark

Last week, I was contemplating a degree in Creative Writing; an MFA. Today, I’m contemplating the personal experience of my son’s tragic accident of four years ago. My mind spins with constant activity of new goals. New ideas and new projects, want to leap to completion without the drudging of daily plodding. This daily plodding often becomes Continue reading

“Help!”

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&gt;

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&gt;.  While this may mean additional assistants, it should include teachers and communication devices.

Martyred in Marriage

I came home after spending a lot of time with my older sons. They wanted to visit the creative lab, which is in the public library, allowing them to utilize various printers and soft wares to expand their imaginations. Wonderful, right? I thought so. After all, I promised my eldest that we would go so that he could print something he developed for a friend and the Mom schedule was over-scheduled as usual. He was reluctantly patient, but patient none-the-less.

Meanwhile, our main bathroom is under construction. I grew up living in a house that was under construction for several months. This remodeling was going rather quickly to my standards. My husband, on the other hand, has never had the experience of living in “limbo”, even though his culture dictates a “vamos a ver” attitude about life and its many decisions. He is so aware of the dust and the dirt and things out of place, that he took it upon himself to go through my things which seemed to be cluttering for him, or that seemed to be an excess for him.

When I came home with my sons, I noticed that the magazine baskets were much smaller than they were before leaving the house. I noticed he decided to clean the kitchen and reorganize the counters. I also noticed that he didn’t seem to think the dishes in the sink could be done to add more “cleanliness” to the house. Instead, I found the dishes still in the sink and he was sitting in the kitchen chatting with the night nurse and my youngest son.

I stuck around to help with some homework my eldest needed to have finished for the morning. My husband fell asleep at the table. He was very tired and I couldn’t help but think he may have over exerted himself. I felt bad for him and told him, “Yes, maybe you should go to sleep.” He quickly went to the bedroom and was never seen again. After many of the same instructions were stated in different ways, Justin went off to the bathroom to take a shower….or so I thought. I continued to help my eldest with his homework, despite the time.

After he finished, he said, ” Thank you , Mommy. Good night.”  I hugged and kissed him good night. After everyone was asleep. I went to the recycling can to see if it was true. “No, I thought to myself. He couldn’t have thrown away a large amount of magazines, which are useful, as well as read by others when it comes to recycling. I always take my extra magazines to the library or doctor’s offices to share with others.

I took my flashlight from my purse and walked out to the recycling can to find a full shopping bag of  almost every Yoga magazine and Real Simple in the neighbors can. My blood gurgled and boiled, knowing he did this without my knowledge and as a means to lash out because of the reconstruction in the house, which was not controlled by him. He stepped out of bounds and crossed the line. I took every magazine in the can and brought it right back into the house. He did not want to wait for me to recycle them.

My anger was so hot , I almost took his gym bag in place of the magazines he so painstakingly placed in the neighbor’s can because he didn’t want me to notice. He, who devotedly loves his soccer. What if I threw away at lease one soccer ball, or his bag? How would he feel? Unfortunately, I find these thoughts and discussions wasted. They don’t bring meaning to him. It doesn’t match his world. However, if I did throw away something to do with soccer, bakery or restaurant, he would be touched in anger.

I couldn’t forget the night he threw away personal documents because he doesn’t see the purpose in what I’m working on. Or what I might be saving for later. He doesn’t value what I value. This is my life of a martyr.  Continue reading

Seek and You Will Finish

The daily chores continue to rob the time I desire to work for me. I’m not aware that the sneaky ‘needy’ aspects of Mommydom seep into the hidden corners of the day to obligate me into slavery. I realize now, I must put myself first or I will never complete the starts I’ve made over the years. I realize now, the needy aspects of Mommydom will always try to penetrate me if I don’t seek to finish. This doesn’t mean seeking my time after everyone else. It means I must seek to carve out “my work” before everyone and everything else.

I must envision and develop my schedule as if I were leaving the house and going to a job somewhere else. I must realize that I can save more time for “my work” because I won’t have to travel. But I must be serious about “my work”. I must give it value. In order for branding to occur, value must be given. 1Corinthians 13:2, 3, 13; “If  I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have faith that can move mountains, but have not love, I am nothing. If I give all I possess and surrender my body, but have not love, I gain nothing….And these three remain: faith, hope and love. But the greatest of these is love.”

To love is to respect. Mommydom is a place that often makes me forget to love on myself. I expect others to do it, but that’s not true. My children love me. I know this. But they can’t love on me like I can or did in the past; before them. When my time was more of my time, managed by me, I made choices to spend more time on projects of my doing. I’ve committed to everyone else, except to me. Self-preservation; while extremely important and vital, becomes absolutely necessary in the grand scheme or schedule of a modern woman living in Mommydom. I didn’t think it would come down to this, but I may need to construct a physical schedule with an an active plan of self-preservation written into it until I internalize the nature of it all.

Who Is She?

The author lives in the Sunshine state with her three sons, husband and their two dogs, Daisy and Angel. She enjoys creating new and useful items with a crafty flare, while problem-solving new adventures and enjoying every opportunity to be blessed by the abundance of nature and those around her.