A Little John with a Little Wish.... heartbreaking, ... but a moment ofhappiness is possible

This story had a good beginning. A beginning that lasted five years, then something happened. Something so intense and overwhelming that stripped this family of daily life, routine, hope and all sense of the world. I want to share their story because this story can happen to any family. It has happened to so many families. It will happen to more families. A story of one family allows us the opportunity to provide support to many, to help when it happens, and to bring a dream and solace to this one little boy. This story is close to me, for he is my neighbor, my friend and a child that has brought light to everyone around him, until one day when he couldn’t.

Little John is five years old. He is smart, curious, hyper, and full of love. This child has more energy than my five young dogs combined. Little John uses his physical energy by hopping and jumping, running, dancing and making everyone happy. Little John has a heart that beyond that of any living being I have met. Last Christmas (at age 4) he saw a homeless man on the street and told his mom that he would give up all his toys for Christmas so they could bring home the homeless man and give him a place to live.

Every day when I pull into my driveway, Little John would be in his front yard, run to me and scream Header! He would jump into my arms and ask how my day was. No matter my day, it became amazing in that moment.

 Then one day,…… Little John wasn't there.

I knew that he had a cold. I knew that his mom had taken him to the doctor. The hospital sent him home twice and said that he had a virus. I walked to his home. He was on the couch. He was blue, lethargic and barely unable to communicate.

His mom, decided that he needed to be taken to a different hospital. Clearly the child in the above picture was ill and needed help. She gathered her baby boy in her arms as he screamed in pain and put him in the car. She drove him to another hospital.

As they entered the second hospital, the doctors rushed toward him, put him on a gurney and rushed him to a room. Within minutes Little John was placed on a helicopter and flown to Children’s Hospital in Oakland.

His mother and father filled with questions and a lack of answers stood helpless. They only survived by the air that naturally filled and exited their lungs. Doctors flooded around their son as they started to yell out phrases like, “failing kidney” “liver not working.”

That first night was long and scary.

His liver was functioning below 20%.

The day before Little John was running in the yard playing.

His kidneys were functioning at 10%.

The night before, Little John was dancing in the kitchen.

His fever was rising and he couldn’t produce urine.

The night before he was singing and making up jokes while hopping up and down.

The realization came slowly, but hard. It snuck in but smacked like a boulder. Their son was dying. The five year old that kissed his momma the day before, the five year old that smiled the day before, the five year old that played the day before… he was in this moment, for no reason at all, … Little John was dying.

His parents stood by with their hearts ripped open and gave him all of the love and support that he needed. They knew that his life was no longer in their hands. Their lives, in that moment, changed forever. No matter the outcome, their lives changed forever.

I went to the hospital the following morning to offer anything. What can you offer in that moment to a parent that is standing by her five-year-olds bedside praying for him to show that incredible smile again? I didn’t know what to say, what would matter or how to offer it. I took Little John a teddy bear.

He was in the ICU and I could only see him through the window. He looked up, he waved and my heart broke into a million irreconcilable pieces. Those pieces belonged to his mother, his father, his disabled sister, to Little John and selfishly to me too.

The hospital worked tirelessly to keep Little John alive. There were many scary moments in those first two weeks. Every moment was terrifying to his mother and father as they sit at his side. His mom appeared calm. She was absorbing the trauma. His father couldn’t sleep or eat. His father would burst into tears and scream to the world asking why this happened. He needed to know why his son was lying in a hospital bed and dying. A parents fear and grief is more powerful than anything in this world.

Little John had to be placed on dialysis, receive plasma transplants, received a central line, a feeding tube and a host of other treatments. The doctors, there were so many doctors, worked daily to keep him alive and figure out what was wrong. They juggled a variety of different diagnosis, but they could never decide on one. Meningitis, a variety of forms of it, was discussed and discarded.  HUS was up for option, then Atypical HUS, TTP, and the list goes on.

Little John remained in his ICU bed, with parents by his side, for two months. Mom and dad could only hope for a diagnosis that would allow their baby boy to live, to be healthy, to one day come home and stand in their living room and shoot them his incredible and heartwarming smile.

The doctors finally decided that they couldn’t decide. His symptoms are that of a child with Atypical HUS and TTP, but there are no cases of a 5 year old with these, so he is in the grey area between them. His diagnosis is of AHUS/TTP.

Little John finally started to get better. This is great news. He was able to come home for Thanksgiving. This is wonderful and amazing.

But…

Little John is not cured. He is not healthy. He must go to the doctors daily. His mother and father can give him all the medicines and treatment, but there is always the known fact that he is only temporarily better.

Little John has blood disorders.

He is only temporarily better.

This is haunting and a nightmare that no family should ever endure and yet so many have and will.

Little John made one request when he was in the hospital, hooked up to numerous machines and fighting for his life.

He asked his mom that if he got better could they go to Disneyland.

That’s all this little boy wants as he continues to fight for his life. His family created a GoFundMe.com page and is trying to raise money so that mom, dad, Little John and his disabled sister can go to Disneyland and forget for even one minute the trauma and awfulness that they have endured these last three months as well as what is to come in the future.

This boy was healthy, happy and jumping and 12 hours later he was dying in a hospital with no answers as to why. The diagnosis is uncertain and so is his future.

His family does not have the means to take this trip to Disneyland. If they had the means they would take him in a New York second, but they don’t. So they took the step to ask the kindness of strangers and family to help them. I, too, am asking for help for Little John. One wish, one dream, for a five year old boy, will give some happiness to a tragedy that will plague his health and happiness for the rest of his life.

Last month San Francisco pulled together as a community and made BatBoy’s wish come true. San Francisco was transformed into Gotham City, people donated, attended, and made an entire day for one little boy. This little boy, Little John, who will continue now to fight for his life, for the rest of his life, is just asking to go to Disneyland with his family. As mothers, fathers, brothers, sisters, men, women, friends, and humans, …let us come together and donate to help this bright and shining star.

Below is the link to help Little John make his wish come true as he continues to fight for his life. Any donation will help. Sharing the link will help.

Little John only asks for one wish, …..

http://www.gofundme.com/5mutr4

Jaw Meets Table; Thud to Follow

names and indentifying information have been changed to protect the identities of those involved

Sitting in an Individualized Education Plan (IEP) meeting for a 3rd grade student with moderate disabilities is always a scenario with a variety of possible endings. Each meeting is different. Sometimes they are smooth, useful and a plan truly comes together to support the child. Other times they can be stressful and nonproductive. Either way, I was ill prepared for the course of events that would take place at this particular meeting.

We know going into a child’s IEP meeting to determine their special education eligibility, placement and plan that the system for children is flawed. Parents are not perfect. Teachers make mistakes. Schools are riddled with issues. The education system as a whole is internally flawed from start to finish. Nonetheless, we try to create a plan for the child that will last an entire year and will meet each of their needs regarding their disability and academic needs. Clearly, this is a near impossible task, but one that we try to approach with grace.

We gather all of the people that are part of the child’s life and we put them in a room. This includes, but is not limited to, teachers, a special education teacher, an administrator, parents, nurse, and other specialists as needed. The parent is allowed to invite lawyers, advocates and whoever they feel they need or want. Together we sit at a table and discuss the evaluations that were completed, talk about how the kid is doing in school and at home and what the plan should be for the next year. The concept is brilliant.

This particular meeting was nothing like I described above. In fact, this IEP is better described as disastrous and imperfect. The child was 9 at the time and he was struggling. The IEP should have been all inclusive and thorough. It was not. There were only three people in attendance, the special education teacher, the school psychologist and the child’s father. The meeting started as any other. Introductions were made and parent’s rights were reviewed which was then followed by an array of questions to make sure that the documentation had all of the correct personal information for the family. Dad was answering the mundane questions when I first took a long curious look at him. He was dressed down. He was relaxed in his chair with his hands casually folded across his lap. He was calm; his voice low and speech slow. He listened. He answered questions. He followed along as reports were reviewed. The meeting was moving forward as we discussed his child and the special education needs.

Then it happened.

As a report was being discussed, I sifted through one of the documents and noticed that there were 4 children in this family. Brian was listed as the oldest. I asked the father how old the brothers were and he stated that they were 3, 6, and 8. I made some comment about how having four boys must be overwhelming. Then I asked where they attended school and this is the sentence that was spoken to me.

“Brian’s 3 and isn’t in preschool yet. Brian 6 and goes to a charter school by our house. Brian and Brian go to school here.”

Generally, when in the professional setting, I am able to monitor the words that leave my lips and the facial expressions that I allow others to see. In that moment, I was not in control of my face or my jaw that hit the rectangular, tan table with an excruciatingly loud thud. My mouth, unfortunately, uttered some form of the word ‘what’ and I feared what body language I putting forth. Yet, the father was not fazed by the fact that my shock level was on full alert and I was looking at him as though he had transformed into a platypus while uttering the above sentences. I collected myself, to some degree and I spoke,

 “All four boys are named Brian?”

“Yep,” He stated while still sitting there, leaned back in his chair and with his hands folded across his lap.

I let it go.

Another team member tried to move forward and began discussing how Brian was doing in the classroom. She said a cluster of words that I did not process or engage in listening to.

Apparently, I did not let it go.

“Why did you name all four boys, Brian,” I stupidly asked and quickly regretted.

The father calmly gave me the following explanation:

When my girlfriend was pregnant with our first child, we sat down to talk about names. We decided that we had to pick a name that we really liked because we would name all of our kids the same whether they were boys or girls. We figured that this way, if they were ever taken by Child Protective Services and put in the foster care system they wouldn’t forget their sibling’s names, especially if they were separated. That way when they aged out of the system they could find each other since they would know one another’s names.

Please either reread paragraph 7, or insert your version of my inappropriate and involuntary physical and verbal response here.

All at once a flood of questions and clumps of words came to my mind. I am positive that my face looked like a collection of massive muscle spasms. Fortunately, this time, I did not speak. I did not speak. Yet, I had thoughts, many of them. They came all at once and in no particular order. I shall list them.

1.  What?

2. Did I hear him correctly? What? Wait. How?

3. How do you run a house with four kids names Brian?

4. He chose to name all four of his children the same name? He has an explanation for this?

5. Wait, TWO humans came up with this idea? Two humans agreed that this was a good idea?

6. How does someone consider CPS as part of their birth plan?

7. While in the process of having kids, you consider that they may be raised in foster care?

8. What was he planning on doing to these kids that they may be taken by CPS and put in foster care?

9. How the hell does it make sense that if they all have the same name that then and only then will the kids be able to remember their sibling’s names?

10. How is this man telling me this in such a matter of fact?

There, there are 10 of the million and a half things that ran through my head in that moment. I managed to not speak or allow any of my thoughts to escape my mouth.

 As we wrapped up the meeting and niceties were exchanged the father pushed back his chair and stood up. He reached across the table, turned to me, and outstretched his hand.  I stood, extended my hand and we shook. I did not speak. He spoke,

“Thank you all for your time. I have to get home; my girlfriend is 8 months pregnant with our 5^th child. It’s a girl!”

Words, simply words...

I have a love for words. I love the way they sound. I am enamored at how there are 26 little pieces that you string together in a variety of ways and create words. It is magical how letters create phonemes and phonemes create words. I am naturally attracted to them. I have been since I was a toddler. It’s astounding the way words are constructed into sentences, paragraphs, essays, books and novels. A single written sentence can break a woman’s heart, make a child rejoice and bring tears to a man. One strand of words can create a sunset when you have never experienced one. One set of words can inform you of anything you wish to learn. 

I love to write. The sound of the keyboard and the way fingers move across each key is calming. The sound a pencil makes as it strokes across a stack of lined paper has the same effect on me that a roaring fireplace does for others. The feeling of a pencil in my hand and the movements of creating letters is exciting and perfect within my body. Watching words be formed on a page is simply fantastic.

I love how each word has a definition and is assigned a part of speech. Nouns have a physical description that can be described with more words or with pictures in our heads. The word “bucket” may create a picture of a black kitchen bucket, a stainless steel trough, a small red sand bucket, or a number of other pictures. For me, the first visual that comes to my mind when the word “bucket” is said, is of my yellow Labrador Retriever that I had many years. Yes, I named her Bucket. I’ve been asked countless times why I have named my dogs such, as they call them, “weird” names. It is for this very love of words that I name my dogs after inanimate objects. It is incredible to me that a word can create a picture in our minds. It is even more incredible to me, the transition that takes place when you give a word a new meaning. Parents name their children after what they want for their kids, a feeling or after a month; Hope, Faith, or August. We don’t question them. When I named my dog Carwash, I was regularly questioned as to why I would do such a thing. The word ‘carwash’ has a definition, the name Carwash, is just a word. I like the way it looks when it is written. I like the way it sounds when you say it fast or when you say it with love and drag out the sounds. I simply like the word.

When I named Bucket, I had a hard time changing the picture in my head. For the first several months that I had her, every time I said her name I saw a picture of a silver bucket appear in my mind’s eye. As the months passed, the visual that I saw slowly changed and my visual definition of the word bucket took a new shape. When people would say the word “bucket” in conversation, I would no longer see that silver bucket, but rather, I would see my 6 month old yellow Labrador in all her lanky and puppy-like ways. The word made a complete transformation in my mind. I recall one night when it was raining and a friend made the comment, “It’s raining buckets outside.” The image that appeared in my head was of a million yellow labs falling from the sky. It took me a second to recreate my visual definition of the word so that I could understand the commonly used idiom that I had heard and understood so many times before. 

Words are strings of letters. Some person along the way decided to put some of those letters together and made a word. They attached a meaning and then repeated the word to other people. The definition allowed them to have a mutual understanding. Giving names allows us to again use words. We are introduced to that animal or human with the name and we have a common understanding of what to call them. It’s phenomenal how words have meaning and even multiple meanings. A simple letter change can change a word, and at times there is no need to change a letter. It’s incredible. I am happiest when I am writing words, when they are thought of in my head and find a way out of my body and onto paper. I have a love for words.

he sat there on the side of the road

He sat on the side of the road with his head in his hands. Sweat was dripping off of his cheeks, or were they tears? He wore his red hat low and shoulders high and tense. His cut off shorts were worn with stains of paint, dirt and a slight smell of moth balls. His t-shirt, white, always white, was wrinkled and never perfectly white. His shoes were generally untied with the purple shoelaces dragging beneath his mid-sized feet. The sun struck down around him and tried to attack his stark white skin, but the oak tree branches above him shielded most of his exposed dirty skin. Occasionally a car would pass, but the boy didn't look up. There was no one that he wanted see. 

He stared at the ground with such intent that you would think that it would answer him. He blinked only when his eyes forced shut and reopened to the stark concrete road beneath him. If you look closely at him you will see the scab on his right elbow, the dirt beneath his nails, the the red welt on his arm, the bruise on his shin and you don't have to look too close to see the swelling of black and blue eye socket. In fact, you didn't have to look too close to the red blood oozing off of his lip either. The blood had started to clot, but when he moved his mouth even slightly, the blood would start to trickle out of the cut ever so slowly.

Today isn't much different for him, except today he decided it was time to leave the booze ridden and scotch stinking apartment. Today he didn't want to spend another minute waiting to see what damage could be done to him. Today he decided that he could find a better way to spend his day. Today he ran away.

He sat on there on the side of the road for what must have been hours. He just starred. He didn't move. He just starred. When he finally stood up and stretched his overly cramped legs, he started walking. He walked. He walked until he arrived at the top of a hill where he used to ride his orange BMX bike. He walked until he was at the top of the ditch looking down where he once smiled. He starred. He starred for a long time. He reached slowly under his shirt and pulled out his fathers .45. He quickly drew it to his head. BANG. His body dropped limp into the ditch where he once smiled. His body perfectly still where he buried his last happy moment.

His father didn't know he was gone. He was gone for 13 hours. The radio reported a young boy's body found in the bike racing ditches five miles from his house and that the boy had killed himself. His father thought to himself, "That's a damn shame. Someone should have a taken care of that boy."

the boy cried to be saved

It was almost like he was forgotten shortly after birth. He has lived his short life in fear, without guidance and treated as an adult, but never as a child. His father gave him his first joint to smoke when he was 11 years old. They smoked it together. It made him feel sick, but he sat and laughed with his dad and tried to enjoy this small amount of attention that his father was so graciously affording him. 

Two weeks later the boy bought a joint off the street and brought it home for his dad. The boy figured he could buy the joint in order to buy time with his father. His father took the joint from the boys hand, said thank you and walked away. The boy looked sadly at the ground and wondered what he could try next to get his fathers attention.

A few days later the boy met some other boys while he was hanging out in the streets. The other boys seemed to like him. They asked him to do things and he would. They congratulated him and this made the boy feel good. They called him and asked him to meet them places. The boy was pleased that they wanted to spend time with him even if he had to do things, like steal, for them. He became one of their members. 

At the age of 13 the other boys gave him his first gun. He was proud and he took it to school everyday. He used it only a few times. Only once did he hit another person. It was only in the leg.

The boy often got into fights at school and the other boys rewarded him with joints and alcohol. They patted him on the back and told him he was doing a good job. They were proud of him. He liked the feeling of someone being proud of him. 

At the age of 14, the boy found a small bag of cocaine in his fathers room. He took the bag, knowing what it was, and showed it to the other boys. Together they cut up lines and snorted the cocaine. The boys asked if he liked the cocaine and he said he did. They told him that they could get plenty of it to give to him if they did what they told him to do. He did. 

At the age of 15 the boy skipped school one day to hang out with one of the other boys, his best friend of three years. They went to the corner store. Across the street from where they stood was another group of boys. That side of the street was that groups territory. The boy knew not to cross the street. Then a girl that he and his best friend knew started talking to them from across the street. She lured them to her. The boy and his friend began to walk across the street. They made it almost to the curb when one of the other boys from that side of the street walked up to the boys best friend, put a gun to his head and pulled the trigger. The 15 year old best friend dropped to the warm concrete with a hole in his head and never took another breath. The boys white t-shirt was splattered red with blood, his face dripping with particles of his friends brain and took his last look at his friend and then ran quickly back to his side of the street corner. He stopped for only a second to draw his gun, shoot it three times and then he ran and ran. He ran all the way to his other friends who then ran back to the street corner. The boy did not follow. He ran home and took off his bloody shirt. He held it in his hands and cried. He placed it in a plastic bag, closed it up tight and hid it in the back of his closet where it still remains today.

A week later the boy began completing more errands for his friends. He never went anywhere without his gun. The more errands he ran, the more cocaine they gave him. He rarely went to school. He sometimes smoked pot with his father. He held up two women for their money. He beat up a young boy for his iphone. He tried not to sleep because the nightmares were so loud in his head.

The boy went to school one day and his teacher told him to take off the giant necklace that he was wearing. The boy said no. The teacher reached to grab the necklace and the boy swung and hit her with the book in his hand. She had to have fifteen staples put in her head to keep it closed from the wound. She wears the scar daily.

At age 16 the boy continued to try and get his fathers attention. He showed his dad his gun. His dad told him that the gun was for pussies and he needed a better gun, so he gave him one.  The boy brought his dad joints and they smoked together. His father had taken to drinking in the last few years so the boy stole alcohol from the corner stores and drank with his father into the wee hours of the mornings. The boy liked the taste of whiskey.

At age 17 the boy was snorting four lines of cocaine every morning and fifteen to twenty lines throughout the day. In order to afford his habit he had to continue to produce merchandise that he stole, money that took, electronics that he robbed people for or run errands that were asked of him. He went to school high one day. The principal had him in his office. He asked the boy to take off his hat. The boy refused. The principal asked again and the boy stood up with intense fervor grabbing the edge of the desk and flipping it onto the principal. The cops came and they called his dad. His father didn't answer.

At age 18 the boy was snorting eight lines of cocaine every morning and twenty to thirty lines throughout the day and night. His friend offered him some heroine. The boy figured he had nothing to lose by trying it. He didn't like it. Another friend gave him some crystal meth. The boy liked it. 

A few weeks later the school counselor spoke with the boy and his mother and found a rehab for him to attend. The boy agreed. His mother was sad. She cried. A week later the boys father arrived at the school. Nobody on the staff knew who he was. He had never set foot in the school before that moment. He spoke to the counselor and said that his son was not going to rehab. The boy didn't go.

Four days later, at the age of 18 years, 2 months and 3 days, the boy sat on the stoop of his friends house. He was snorting cocaine out of a little canister that he bought the day before. He figured it was easier than having to cut up lines every time he wanted to get high. He put the canister up to his nose and snorted the pure white powder. An hour later the boy lay dead on the steps with a small amount of blood that dripped out of his nose and onto his upper lip. His hands were clenched on his shirt over the left side of his upper chest. His eyes were wide open.