Good morning sunshine!
Working in a pediatric facility working with physical and mental challenges. Falling in love with the children and learning from them.
I smiled nervously as the tour began. The specialized nursing home for pediatric patients was immaculate and pristine. It was brand new and very environmental friendly. I had applied for the evening nursing supervisor position and had passed the written drug test, personality test and the oral interview with a bunch of staff and managers. We toured the school that was attached to this nursing home and the classrooms with kids in wheelchairs hooked up to mobile vents, kids with trachs, mentally challenged and kids with strange, rare syndromes that I had never heard of.
It was one thing seeing one child with special equipment but 12 in a class? I was a bit overwhelmed. As I entered yet another class with Janice the educator who was showing me around, my eyes was drawn to a child. He looked huge. His face was oversized and I could see a scar on his sparse scalp (VP Shunt?).His body was round like a lump and his hands and feet were short and thin. His eyes were open and a huge grin split his face wide. He looked like Humpty Dumpty perched on a wheelchair instead of a wall. I was frozen to the spot looking at his disproportionate body wanting to run away from all this.
"Come; let me introduce you to Jake. Jake is 17 years old and has multiple issues. He has been with us since he was a young child and is almost ready to graduate from here." I forced my reluctant feet to walk closer to Jake. I realized that his eyes were sightless but the happiness on his face was real. He was listening to a song and moving his massive head to the music, grinning and grunting.
"Hi Jake! I am Annie. How are you?" I gingerly touched his hairy arm. He stopped swinging his head for a fraction of a second and then started back again making strange crooning sounds with his mouth.
Janice saw the question in my eyes. "Jake is blind, cannot walk or talk and has a VP Shunt for his hydrocephalous. He is very alert and responsive. His favorite song is, "Born in the USA!" I smiled weakly and said "He seems like a typical teen with his music. Nice song Jake!"
I left the room with her and we completed the tour of the rest of the facility. I accepted the job and soon got immersed in my routine as the evening supervisor. I rounded on the children, their parents and the staff and went into every room and greeted the children while my eyes quickly did a safety check on their lines, oxygen, tracheostomy, vent, cribs, railing, feeds and monitors. Most of the evenings they were congregated in the group space, sometimes with recreation therapist, music therapy etc. After my rounds, I met with new orientees, did staffing for the night and troubleshooted when there were problems. We also had the occasional emergency ranging from clogged trach or GT to respiratory distress and cardiac arrest.
Once I got used to seeing Jake, I adopted him as my special child. I had a few on every floor. I realized that everyone from the CEO to the housekeeping staff had someone that they were drawn to. I saw staff bringing stuff the kids needed especially when their parents were not involved or could not come frequently. Not all staff could afford the gifts but they made sacrifices and made sure that the children were taken care of. Christmas was a time for presents and the children looked beautiful in their brand new clothes. There was not a floor where a kid had not been adopted by staff!
My view about children with physical and mental challenges completely changed. Once I got to see their personalities, their behaviors, their smiles and tantrums I fell in love with them. It is one thing to listen academically to a list of medical issues that a newborn has and wonder about the quality of life but another to care for and interact with them and know them for their spunky behaviors, likes and dislikes and want to give them the best care possible, keeping them happy and comfortable. Normalizing their lives with school, celebrating holidays, birthdays and giving and showing them love. They blossom. There are countless stories of children given a certain age to survive who have lived and aged out of that pediatric facility.
I never saw Jake's parents during the week. I heard that they rarely came as they lived far away. I tended to spend an extra minute or two by his bedside during my rounds talking to him. He always stopped what he was doing when I entered and I wondered if he smelled my perfume and knew my voice. I talked to him softly rubbing his arm (which he loved) and asked him about his day in school. He always shook his head and crooned in reply. I would tease him about his music and he would laugh. Checking in with him was always the best part of my day.
I wondered how he was so happy always and what I could learn from him accepting his circumstances and living his life fully on a daily basis. When I left the facility, the saddest part was to leave Jake, not knowing if and when I would see him again. Few years ago, I heard that he had aged out and had moved to a different facility which was 5 minutes away from my house. I went to visit him and he started smiling as soon as he heard/sensed me. There was no music and the place was gloomy and silent. I put his song on my iPhone and he started crooning loudly. The staff was surprised and I told them all about Jake.
The staff got used to me visiting him some Sundays after mass. Jake would perk up as soon as he heard my voice greeting him with "Good Morning sunshine!". Sometimes, my children would accompany me and talk to him. He loved that and his face always had that wide smile like sunshine. One Sunday, I took Sandra my daughter with me after mass and spend time with Jake. I felt strangely reluctant to leave him and left after spending a long time with him.
At work, I got a call from a person who worked at the children's facility telling me that Jake had passed from aspiration pneumonia. His family called after the services were done and he was buried. None of us who loved him got to say goodbye. Jake had a full life. He was supposed to have died before the age of 5 and he had just made 22. He left us with a legacy. A legacy of love.
To love everyone without reservations, even if they are not perfect. To laugh and smile and celebrate life for the gift it is to us even though your circumstances may be less than perfect. To accept one another without judgement and with complete openness. To have the mind of a child; curious, excited and full of wonder. To do the right thing always when we work with anyone especially the young, disabled, sick and helpless. Use your free will to do good. I have his picture in my office and I smile every time I see his happy grin.
Jake, my sunshine I will miss you and will keep you close to my heart always!
About spotangel, BSN, MSN
Mother, nurse and friend. Loves a good book over a party. Loves God above all!
Joined: Mar '12; Posts: 209; Likes: 842Nov 24, '17Love, love, love this. It's such a special population to work with. I'll always remember all the little ones I worked with in home care and when I did special-ed nursing in the. <3 My "Doodlebug" and so many others that each earned a special place in my heart. I've moved on to another position since then, but I loved those days. I hope if I ever have a child that requires that level of specialized care, they have a nurse like you.Nov 24, '17It is a previlege to take care of these children. I am amazed at the courage, trust and love they give us. They are truly our teachers!Nov 26, '17God bless you spotangel and God bless Jake too!!!
Quote from spotangel, "To love everyone without reservations, even if they are not perfect. To laugh and smile and celebrate life for the gift it is to us even though your circumstances may be less than perfect. To accept one another without judgement and with complete openness. To have the mind of a child; curious, excited and full of wonder. To do the right thing always when we work with anyone especially the young, disabled, sick and helpless. Use your free will to do good..."
Awww, that is beautiful, spotangel! Thanks for the reminder, Jake. We all feel your love ripples.Nov 26, '17Thanks! I wanted to keep his memory alive in the hearts of those who knew him and those who didn't. Inside that broken body lived a majestic spirit!Nov 26, '17You are a lucky woman to have been blessed by being touched by Jake's pure joy of life. I'm sorry to hear he passed.
Too bad we can't all learn a lesson from Jake and enjoy life as the gift it really is. I spend far too much time worrying about ridiculous or unimportant things, and far less being happy with the good things I have been blessed with.
If you stop and consider it, you've already won the lottery by being born who you are. Even at the cellular level there was some mighty stiff competition to over come at conception. From this view point we are all a winner.Nov 27, '17When I was born with hydrocephalus in Jan '72, my parents were told I might never walk, talk, or go to school. I'm also epileptic, I can't drive, and I've been on disability for a decade--but I have a college degree and I'm happily married. It breaks my heart that kids with hydrocephalus still die--I'll be 46 in a couple of months.Nov 27, '17Wow! That is fantastic!
Jake had multiple issues medically.
Never seen a sweeter kid/ young man.
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