by Cindy Levin | May 31, 2017 | 2017, activist, Cindy Levin, Education, Preschool, School, World Voice, Youth Programs
“Survival of the fittest” is how Patrick Makokoro jokingly described his childhood with a smile, only he wasn’t exactly joking.
Patrick Mokokoro
A handsome father with a friendly and earnest demeanor, Patrick is an early childhood education activist in Zimbabwe. He came to my community in St. Louis, MO last week on a U.S. media tour to talk about the importance of U.S. support for the Global Partnership for Education. He knows firsthand how it feels to be denied an education. He grew up in poverty as the 8th child in a family of 16 kids. His Darwinian comment about survival describes the competition he felt when he had to scuffle with his siblings for a share out of a big bowl of cornmeal. Despite barely being able to afford school fees, his parents – a gardener and a housekeeper – valued education highly. In fact, the phrase “Education is the key to success” was drummed into Patrick, early on as his parents struggled to give their kids the best opportunities they could.
He took the lesson to heart and was the first child in his family to pass his basic examinations at 16 years old, making him eligible for high school. Full of pride, he felt sure that his father would be proud to see him continue, but unfortunately, his father had to tell him, “I’m sorry, I can’t afford to pay your fees because you have many siblings. If you continue, I won’t be able to pay for your brothers and sisters to go to school.” It was a crushing disappointment. His bitterness broke the relationship with his father for a time and he left home to find his own way.
An opportunity to work with vulnerable children in an orphanage gave him an eye-opening experience that changed the course of his life. As upset as he was about his situation, he was surrounded by children – happy and playing – who had no parents at all and needed far more than he did. He rolled up his sleeves and guided the children to play sports and plant a garden to help with their nutritional needs. He dedicated his life to serving orphans and finding sustainable solutions to support kids like them.
Patrick supported himself through the rest of high school and college while working with other non-profits addressing the plight of Zimbabwe’s children. Time and experience taught him that local resources were often not adequate to respond to shortages in food supplies, medical care, psychological support, and school fees. So, he started his own organization called the Nhaka Foundation to address these needs together. “Nhaka” means inheritance.
“Education is the key to success,” says Patrick echoing his father. “So, if we are to leave any inheritance for children and orphans, it should be an education.”
Nhaka Foundation
This year, the Nhaka Foundation is celebrating its 10th anniversary of giving children a healthy foundation and early learning opportunities. Patrick is now an international advocate, traveling as far as the U.S. to share how critical it is for us to continue to support country-led programs investing in children.
Patrick at a meeting with RESULTS St Louis Activists and writers from St. Louis media. Photo credit to RESULTS St. Louis
It’s important that he does come here to tell his story. After all, the U.S is a donor to the Global Partnership for Education (GPE), which provides grants to the Nhaka Foundation! Our money is pooled with other countries and distributed by the GPE after rigorous scrutiny. It assures money is not lost to corruption or poor planning. It ensures that we can invest in the highest quality programs that will help the most vulnerable children.
Global Partnership for Education
The coincidence that I met Patrick a week before the primary school graduation of my youngest child was not lost on me. While we celebrate the shining futures of our little ones, most of the parents in our school have no idea what is happening in Zimbabwe, nor the transformative work the GPE does with our tax dollars. Yet, all Americans should know that it is through our action or our inaction, that we impact the fates of millions of children worldwide. When we speak out and demand that our government support the GPE, we change the course of millions of lives from despair to opportunity. When we remain silent, we risk the bright hope of Patrick’s orphans and so many like them.
If you live in a donor country, speak out to your government about the importance of global education and urge them to pledge generously to the GPE for its 2017 replenishment campaign this year. As a World Mom, I want to stand with Patrick and pass on this inheritance of education to every child.
As a World Mom, I want to stand with Patrick and pass on this inheritance of education to every child.
Photo Credits to the Author, RESULTS, Global Partnership for Education
Cynthia Changyit Levin took her first advocacy action in 2001 with a hunger event at her church. Years later, after resigning from her position as an automotive engineer to raise her newborn daughter, she searched for a way she could better the world from home while caring for infants. She returned to advocacy and is now a dedicated volunteer activist with RESULTS, Shot@Life, ONE, and Bread for the World.
Levin involves her young children in her advocacy activities, including face-to-face lobby meetings with members of Congress, letter-writing, and classroom advocacy projects. She shares what she has learned about advocacy through her Anti-Poverty Mom blog and training other activists with RESULTS. Her op-eds and letters-to-the-editor have appeared in Chicago area newspapers as well as the St. Louis Post-Dispatch, Washington Post, the New York Times and the international Financial Times.
Levin has served on the Board of Directors for RESULTS/RESULTS Educational Fund and on staff with RESULTS Educational Fund as a fundraising coach for grassroots volunteers.
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by Maureen | Feb 15, 2017 | Being Thankful, Child Care, Communication, Education, Indonesia, Maureen Hitipeuw, School, Special Needs, Uncategorized
I still remember that day from last year.
I knew something was not right when the homeroom teacher got the principal, school counselor and some other unfamiliar faces as I sat down in their office.
My gut feelings were right. They pretty much told me my son couldn’t continue in that school for the next school year. In other words, my son got kicked out of school.
“We all agree that it is best for your son to go to a school where they can cater to his needs.“
I felt anger rise in the bottom of my stomach. Anger for receiving the news on such short notice mixed with a sense of panic of where to put my son to school next.
I blamed myself for this. Not my boy, but me…his mother who should’ve done more investigative work before sending him to the closest school to home. When I picked that school it was because they were the closest to our home. If you are familiar with Jakarta’s traffic, you would understand that I just don’t have the heart to send off my child to school before the crack of dawn like many other children have to do. I thought I had picked the right school.
My son has his challenges. Behavior problems that the school simply couldn’t handle anymore.
My sensitive boy has always been different.
He has been tested for behavior issues before and the results showed that he has no psychological problem and that he is a bright kid. He is not autistic. He is just different. He has difficulties controlling his frustrations which end up in him crying. In a way, his emotional intelligence is a little behind than the other kids in his classroom. This made life so difficult for him; He hated going to school and would come up with 1001 excuses to skip school. Being different is not easy.
The school in question was an expensive school that cost my family over $2,000 in enrollment fees alone and they do have great programs, albeit very high academic demands. My son used to come home with a backpack full homework folders. We were both frustrated by the volumes of academic pressure he was under.
One of his teachers told me one time that he was very smart but he’s not the type to sit still and listen to his teacher during class. Yet somehow he managed to ‘absorb’ what the teacher was talking about.
He is different.
When my son got kicked out school, his father (my ex-husband) was diagnosed with cancer and I was under unbelievable pressure from work. The world felt so heavy on my shoulders. I went home from that meeting feeling defeated, crushed. I kicked myself for not being a good mother who could stay home with him like the other moms. I blamed myself for working long hours. Maybe that’s why he is misbehaving at school? To protest the life that he has. A father who lives overseas, a mother who works long hour, no friends around his age at home to play with. The mommy guilt wore me down.
I could not afford to put my son back in school straight away so I kept him at home for about 6 months, missing the first semester of the new school year. I was too embarrassed to talk about this openly until now.
It wasn’t until I found a local school recommended by a fellow single mom friend that the guilt evaporated. Located a little further away, I studied their concept and philosophy and after a trial class for my son, we both fell in love with this new school.
A school where he could be completely himself must feel liberating in a way. Where he is not judged by whether or not he could sit still or if he prefers to sit on the floor. The new school emphasizes on the facts that every child has a different combination of intelligence that makes him/her unique.
My son started this January and he couldn’t be happier. I have never seen him got so excited about school. Yes, he still has some challenges but seeing how happy he is has reassured me that we finally found the right school for him. Looking back, I realized leaving his old school was the best thing that could ever have happened to him.
How about you, Moms? Are you happy with the educations that your children are getting?
by Kirsten Doyle (Canada) | Nov 25, 2016 | Being Considerate, Canada, Caring, Helping, Kirsten Doyle, North America, School, The Americas, World Motherhood
As parents, we tend to spend a lot of time worrying about the world are growing up in. There seem to be threats lurking everywhere, from seemingly innocuous neighbours who turn out to be child molesters to terrorist organizations and dangerous people being elected to powerful positions.
It is easy to be frightened for our children. It is easy to let the tragedies and the negative messages of the media overwhelm our lives.
From time to time, though, good things happen that give us hope for the futures of our children. That hope is multiplied when something good happens as result of a kid – a symbol of the future – going above and beyond what most people would do.
The story I want to tell you today started at a motel just down the road from me, which is used as a shelter for incoming refugees. Recent arrivals include several Nigerian families who have come to Canada to escape Boko Haram.
One of the Nigerian mothers, who had been in Canada for just two or three weeks, put her three young children onto a city bus so they could get to school. At the bus stop closest to the school, two of three children got off the bus. Their brother, who is in Grade Two, didn’t notice that they had left the bus, and they didn’t notice that he hadn’t followed. The two sisters went to school under the assumption that he was trailing behind, while he continued alone on a bus in a busy city that was new to him.
It didn’t take long for the school staff to notice that the child was missing. They put out a school-wide announcement for him and they searched the school yard.
Meanwhile, on the bus, a Grade Eleven student who was on his own way to school noticed that something was amiss. He had seen the three young children board the bus, and from the way they were chatting it was obvious that they were together. After the two sisters left the bus, he asked the little boy what his name was and what school he attended.
The boy was able to give his name, but being so new to the country, he did not know the name of his school. The high school student took out his phone and used Google Maps to find out the name of the school closest to where the two girls had gotten off the bus. He called the school, told them the boy’s name and asked if he was their student. When they said yes, he promised to get the boy safely to the school.
He got off the bus with the boy and crossed the road with him. The two of them got onto a bus going the other way, back toward the lost child’s school. The child, being under the age of thirteen, was not required to pay a fare. The high school student used his last bus pass, the one he had been intending to use to go home at the end of the day.
About ten minutes later, the child was returned safely to his school by the high school student. The little kid went to class while his principal drove the big kid to his own school. Lives that could have been changed forever by a tragedy instead went on as usual.
Sometimes, life turns on a dime. Most people are so wrapped up in the busy-ness of their own lives that they would not notice a seven-year-old traveling alone on a crowded bus. That child could end up lost, killed, hurt – the possibilities are horrifying. But because of one teenage kid who took the time to observe what was going on around him, and who cared enough to take action when he saw something that didn’t look quite right, this story had a happy ending.
In the comments below, tell us about something good you’ve seen or heard that gives you hope for the future.
This is an original post to World Moms Network by Kirsten Doyle of Canada. Photo credit: BK. This picture has a creative commons attribution license.
Kirsten Doyle was born in South Africa. After completing university, she drifted for a while and finally washed up in Canada in 2000. She is Mom to two boys who have reached the stage of eating everything in sight (but still remaining skinny).
Kirsten was a computer programmer for a while before migrating into I.T. project management. Eventually she tossed in the corporate life entirely in order to be a self-employed writer and editor.
When Kirsten is not wrestling with her kids or writing up a storm, she can be seen on Toronto's streets putting many miles onto her running shoes. Every year, she runs a half-marathon to benefit children with autism, inspired by her older son who lives life on the autism spectrum.
Final piece of information: Kirsten is lucky enough to be married to the funniest guy in the world.
Connect with her on Facebook and on Twitter @running4autism. Be sure to check out her personal blog, Running for Autism!
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by Coretta Vermeulen | Oct 3, 2016 | Children with Disabilities, Coretta Vermeulen, Disability, Europe, Hospital, Netherlands, School, Special Needs, Uncategorized
While bombs are being dropped on rescue convoys in Syria again, while moms have to worry about mosquitos giving their children diseases and deformities, while there are moms out there losing their whole family due to war, hunger and hatred, and mothers who have to fight for safety and food for their children every single day, it is with a little reluctance that I share this story.
Compared to their struggle, mine is just minor. Because compared to them, I’m a swaddled, nurtured, spoiled, little Western brat, who can get all the help needed. There is always someone who has it worse then you, and I am eternal grateful to live where I live, and have what I have. Misery has made me humble and grateful and able to see things in perspective.
Yet, our life is no picnic, no walk in the park.
Fygo was born healthy, on April 2nd, just past midnight. It was a C-section, so the doctors could hold it until April Fools was over. I was tired after 33 hours of labour, and stoned out of my mind from the painkillers and anaesthesia. I thought he was UGLY!!!! I wasn’t wearing my glasses, and I’m blind as a bat, and the drugs influenced my judge of character, but I didn’t care, I laughed and laughed. Then daddy came back from counting fingers and toes. “He has 11 fingers!” he said, and he was KILLING me. Fygo happened to have an extra phalanx on the mouse of his thumb, dangling from a small vain. “Ugly” became my kind of “weird”. After recuperating and having stitches, I was brought to my room. My mom was sitting there with our son on her lap, watery eyes, totally in love…. with his red soft hair…. I was able to look a bit more closely, and immediately fell in love with him, too. He was so welcome. His dad and I met in our mid-thirties, on the internet, and if we felt like having a bunch of children together, we had to hurry up.
So there he was, our 11 fingered carrot top. I never expected that, but I love ginger. Lucky bastard, he would steal a lot of hearts, starting right that April 2nd 2006.
He was nervous and anxious from the beginning: we had to swaddle him, otherwise he would wake up from his own movements. But during waking time, he was so relaxed. A little timid, especially around groups of people, like on birthdays, and especially when the attention was fixated on him. A lazy one too: he didn’t turn back when laying on his tummy, he just started moping and then fell asleep with his head on his hands. Or when I put a toy just out of reach, he would try one or two times, and then turned his attention to a closer toy. I could sit him up right, go around the house doing all the work that needed to be done, and come back to find him facing the same way I had put him to: he didn’t move an inch. And yeah, he was a bit chubby and clumsy, but I love that in babies.
Almost 14 months later, his sister Benthe followed. Yiihaa, we could also make girls! Fygo was crazy for his sister. Before saying his own name right, he knew hers. When he spoke of her, he got that dreamy look in his eyes. Asking “Get Benthe?” as soon as I put her to bed.
But we went through a storm at that time as a couple. Some major health issues for my husband, I was losing my pregnancy hormones and fell into depression, money problems, work related problems for the both of us, my eldest got bullied at school and was totally misunderstood, and school blamed it all on him (“he has to grow stronger and fight back!”). And of course, on top of it, though the little girl butterflied through everything, Fygo was getting more and more upset. He changed rooms so Benthe could get the baby room, but we didn’t handle it right. Oh, we did what we could at that time, which was not much: hubby having a hernia, me depressed. But we didn’t talk it through with him, we just did it. He began waking up every night, crying. We couldn’t take him upstairs to our bedroom, because he was so used to his own crib. So we had to go to his room and calm him down there, in which we hardly succeeded. After a while, we were all so tired. We couldn’t do it anymore. We started shouting from our bedroom at him to shut the **** up. There were times that I wanted to smack him, just from frustration and exhaustion. I was the one going to his room all the time, because hubby could hardly get up due to his back problems. We had no family to help us out, mine lives 250 km away, and on hubby’s family we couldn’t rely.
But when he was sleeping, he seemed to glow, he became almost transcendent. We knew he would touch a lot of hearts, he was one big lump of unconditional love.
May 2008. We had a holiday full of Dutch festivities: Queens Day, remembering the casualties of WW2 on May 4th and celebrating our freedom of that war on May 5th, and some Christian holidays as well. My bonus daughter was visiting with her boyfriend, things were looking better, I was looking forward to summer, we put up the pool in the back yard (in which I had to retrieve Fygo because he went under with no safety floater on yet!!!) and were busy redoing the front yard. I was changing jobs and would become a driving instructor. I just had had the interview that day in May, and getting ready to help hubby in the front yard. Fygo was playing in the heaps of sand on the sidewalk, with a neighbour friend. Just when I was about to change my clothes to working clothes, he went with his friend to their house a block away. We always looked out for each other’s children. So we watched them go. Digging, looking, digging, looking, digging, looking. The door opened, the door closed: they were safe.
Only this time, our neighbour was standing with two kids on her bike, ready to pick up her other children from school. This time, she couldn’t bring him back to us. So he went wandering….
After a few minutes, hubby had a bad feeling, like being cut off from something. Where was Fygo? Was he inside our neighbour’s house? I went looking. He wasn’t there. I walked around the block. No Fygo. But still, I was not worried. He was a much seen, much loved personality in the neighbourhood, maybe someone had called him inside, not seeing him accompanied by one of us. Crows were circling the house.
Hubby was going nuts, but I wanted him to stay home in case someone was bringing him back. I got angry at hubby, because if HE felt it, surely I would feel it too! I was his MOM! And more over, Fygo was clumsy, he couldn’t get off the sidewalk without falling to his butt first, and he was startled by passing cars: he would never cross the street.
I went looking by bike, in the direction of a friend that had a dog he loved, crossing the street and passing a pond. Hubby came to the intersection, we talked, and he said he wanted to help searching and went the other way. Still mumbling about him not falling into 7 ditches all at once, I cycled around the pond. There was some debris there, but that was not extraordinary. Almost back at the beginning of the pond, I saw him: floating, face down, his red hair and red shirt waving in the water. My world stopped……
I threw down my bike, jumped into the water, very keenly remembering my First Aid lessons of 15 years before: get him out face down, don’t let more water reach his lunges, no CPR until the water is out, don’t push his heart with your whole hand. I screamed and screamed, and as hubby arrived, so did a complete stranger who was working in one of the surrounding homes, to take over CPR. The son of our physician who happened to pass by, brought his dad, Emergency was called, and in no time the place was crawling with ambulances, medical staff, and people who wanted to have their children to take a good look at this boy dying and these parents crying their lungs out to all the gods in heaven and hell and all their dead relatives to please give him back, don’t keep him there, bring him back, let him go, he’s ours!
Another neighbour happened to be a police officer, and sent them away. She had to restrain herself not to use her baton.
I’ll spare you the details of how many times we were told to say goodbye, the coma, the horrible and continuous muscle contractions, the screaming, the jaw locks with his tongue stuck in between. In the police car following the ambulance to the hospital in Amsterdam, at some point we said: He’s back. He’s going to be okay. At that point, his heart started beating again. And unconsciously decided, that we would make the very best of it, stay positive, not buy into the medical jabber. In both hospital and rehab centre, we were famous for our fatalistic positivism. No one could beat us down. Fygo would NOT die, he would live, and he would do what he always did best: enchanting people, mesmerizing people, touching hearts.
We ended up being in hospital and rehab for 7 months. We slept in Ronald McDonald Homes, with our daughter Benthe. She was the light of our life and really saved us. Rehab didn’t really help, but then again, it was way too soon to see real progress, at least for him: we have seen miracles there, but always for others, not for us. Nevertheless, we celebrated every miracle happening. Being with other parents at the worst of times, needless to speak, we understood each other.
From day one, we said: this will work out for the best, it will be fine, all is well and we will get through this. Also to family and friends, we have been over-optimistic. While the world around us was waiting for our breakdown in the midst of still scary times, we pushed through and found each other. We did everything in our power to keep finding happiness in the smallest things: celebrating the Soccer World Cup and watching the games on a big screen at the hospital with others, drinking way too much beer. Taking strolls through the park. Making passionate love with each other. Being so proud of our other children, because they handled it so remarkably well. Seeing our daughter under the shower, unable to stand yet, sitting there with her bath toys, singing and talking and having fun. Sharing experiences with other parents.
And of course: crying our eyes out for what would never be. Naming all the monsters that we could possibly encounter, the what if’s. Feeling guilty, asking ourselves if we really were not to blame. We never blamed each other though, only that freaking duck he possibly tried to follow.
We were well aware of the situation. We were well aware we could lose him. We were well aware (after realizing and experiencing that waking up from a coma is nothing like in the movies) of the consequences of his condition at the time. We didn’t look forward more than an hour, a day tops. But we could not let reality take over our mood, our faith, our love. So doctors could talk all they want, that harness of positivity was destroyable.
Until rehab….
Fygo had had a nose probe for feeding since the accident. This had worked properly so far in hospital. He never pulled it out, not even in spasms, but when it became apparent for us that he would not start eating by himself soon, we decided to get him a PEG probe (or at least, that’s how it’s called in Dutch; PEG stands for Percutaneous Endoscopic Gastrostomy, meaning basically a hole through his belly, having direct access to the stomach: a literal “belly button”). If need be, we could pull the thing out and the hole would be healed in weeks.
But first, we transferred to a rehab facility, well known for their program for young patients up to 26 years of age, who suffered from brain damage, next to a good hospital where he could get this PEG probe. We were just starting to get psyched about the possibilities there, hearing the miracle stories of other patients and parents. But also exhausted, having a difficult time because Fygo wouldn’t stop crying and screaming and we couldn’t figure out why and couldn’t do anything for him. He was so stiff, we could have laid him between two chairs and use his body to sit on.
We were just starting to get kind of a picture of the future, when the nurse in charge of Fygo accidently pulled out his nose probe, and some of the feeding had gone back into his lungs, causing instant pneumonia. So the PEG surgery was cancelled, and the little guy had to fight for his life again instead. Since then, he has had respiratory problems on and off. Especially in the beginning, when we had all our hope set on the rehab facility and their program, this was a blow.
Fygo couldn’t start the program, which would have been most helpful shortly after the brain damage was inflicted. He was way too ill. And every time he recovered, but every time the team and us made plans to start, he got sick again. He obviously thought differently. We have been in rehab for a long time. We watched patients come in, way worse than our son, see them wake up, regain consciousness more and more, growing into their bodies again, increasing vitality, starting to eat and talk. All patients had changed of course, they were not who they used to be, some “residue” of their trauma was still active, but I could kill for his full consciousness and a strong and healthy enough body to work with for our son.
But never were we jealous. We celebrated each other’s victories, big and small. Seeing other people’s children recover made it bearable for us. We came across a South African neurologist, who had prescribed the sleep medication Zolpidem on a coma patient of his, because he was so restless. To everyone’s surprise, the patient didn’t drift off to sleep, but awoke and moved his finger, after having laid still for 10 years. We tried it. It worked a little. But brain damage due to lack of oxygen is very different from that which is inflicted by trauma (a blow on the head).
We heard of hyperbaric oxygen therapy. This is usually given to people with burn wounds and emphysema or other lung diseases, but clinical research showed more progress in healing brain damage too. Clinical research doesn’t count though, so there was no compensation whatsoever, and the facility that treated patients with hyperbaric oxygen couldn’t treat him anymore, even if we paid for it ourselves. The insurance companies wouldn’t allow it. We could still do it in the US, but it is too expensive for us. Since a few years, the physical therapy that accompanied the hyperbaric oxygen therapy is given here in the Netherlands, but his body is too weak now.
We read into every article, every conversation, every possibility that could help him, with no permanent success. After 7 months of rehabilitation, living in Ronald McDonald Homes and seeing no further progress, we left for home. Fygo could not live with us in the house we rented, and besides, it was too emotional for us to stay there.
We homed Fygo temporarily in a facility with severe multiple handicapped people. He was the youngest. The facility was old, kind of dirty too: it would be torn down and rebuilt, but until then, this was the situation. The other “kids” were noisy, often sick, we went through some deaths at his department, and though the staff did everything they could and with a lot of love, their ways were old fashioned, too. It was horrible to leave him there, and knowing it was temporary kept us going.
It was there that we met with the great guy who is running the school Fygo is attending now, so this period did have some good come out of it. We found another home, away from where we lived, in a much nicer town. My oldest left to live with his dad, a thing he had always said he’d wanted when he was to go to high school, and for us, that was the best. We had to focus on Fygo, and on ourselves.
The new place has a bed and bathroom downstairs, and we got all the help we needed from municipality. They have sponsored so many aiding facilities in and around our house to help us take care of Fygo. They even sponsored a van! Our consultant even asked her whole family to contribute towels and cotton cloths for us. We truly felt welcome in this community, even though they knew we could not give it back, and we are still grateful for that.
We brought Fygo home, still in a vicious cycle of illness, crawling back up, hospitalization, his almost dying, our almost dying, being sick ourselves, depression, addiction, trouble at work, and so on. We didn’t live, but we survived. It was only survival mode that saved us.
Fast forward to this day. Fygo turned 10. He’s a carrot top with a man bun and a grown up body odour now. After his last stay at the hospital this March, we had to have “the talk” again. For the first time in 8 years, he had to be on respiratory support, because just oxygen wasn’t enough. He had pneumonia, and on top of that the flu, that hit really hard here in Europe. What if this happens again: CPR or not? Support or not? How far do we go? How far will the medical staff go? Realise that puberty often means getting sick more, resulting in death. It was a hell of a time again; we went through a lot.
But it helped us say: NO. We don’t agree with that. This is NOT okay. Whatever you say doctor, but NO. NONONONONONONO! This is NOT going to happen. You revive him until he can’t go on no more. HE will show us, and WE will know. And we WILL decide then to do what’s best for him. We are no fools, and we know when to stop. But we’re not anticipating on it, no effing way. We have to live, not think about dying. Besides, can we please stop giving him the milky tube feeding stuff, which only contributes to his slimy lungs?
We decided to go our own way. I make his own food now; I came across a whole community on Facebook that blends normal food for tube feeding. I can add all the good stuff that helps his body grow stronger and give him a more normal intestinal function. And since he does not have to focus on staying healthy, his learning abilities grow as well.
Because, although he can’t sit, hold himself up, let alone stand or walk, has no neck balance, cannot eat or swallow or speak, there is a normal, 10-year-old boy in that battered body of his, that wants to be accepted, play, love, communicate, have friends. He doesn’t think there’s something wrong with him. He feels our moods. He knows when we’re down. He knows it’s because of him, and therefore accepts that he goes on sleep overs every week. But he also knows we love doing this.
Him going to a special class in a normal school, is magic. He learns to work with his eye tracker computer, and in this last 6 months, he has shown us all that he understands everything. He is showing us he can work with that darn computer as well. We see so much of the personality that we’ve come to know in his first 2 healthy years. Communication is key. And he’s still lazy: he knows we know him so well, that he doesn’t really need his computer to tell us. He still will do something one time and one time only, so we make a fool out of ourselves when we want to show other people what he can do. He still doesn’t like crowds or getting attention. He doesn’t want to be filmed while working. He makes jokes and laughs his crooked smile. He still winds women on his little finger with that spotted face and dreamy look.
We KNEW right away, from the day he was born, that he would touch people’s hearts, and he does. Never foreseeing how of course, and if there would be a pill or a procedure to let him be “normal” again, we would gladly take it, but even though the pain and the suffering and the almost deaths and the almost divorces, this life is still worth living, and it has brought us so much more then we could ever experience had we lived a normal life.
Fygo is still not in the clear, and maybe he never will. Right now, his spine is a mess and his lower rib is about to touch his pelvis, and we will have to decide whether he should get surgery or not. Well, actually, not is not an option. It’s more like: when.
He’s grown so fast and whatever muscles he still has are so tight, that his thigh bones are like parenthesis, and completely dislocated. His knees have been broken several times, without clear reason: he’s become fragile from not moving at all. His muscle tissue is nihil. Epilepsy is becoming a daily frenzy.
So yeah, we know we will outlive him. Thank God we will. But until then, we will get everything possible out of this life we gave him, that is our responsibility. And it is not about giving him a better chance of survival through intensive therapy, medication and working hard on recovery. He will not recover, because he already IS the best version of himself. We would be fooling ourselves if we think he could get any better.
But to us, it’s about showing him this beautiful world in a way we all enjoy. It’s about pleasure. It’s about fun. It’s about making memories. We still want that side cart on daddy’s motor cycle, because we know he will love it. We still want to go on holidays and show him other parts of the world, and have him in an airplane. We still want a farm with tons of animals that react on his energy.
We want him to know that whatever has happened, it’s okay. It has to be.
Otherwise, life and all this, is pointless.
I'm Coretta, a former teacher. I'm married, and the mother of an 18 year old son, a 9 year old daughter and a 10 year old son, and bonus mom and grandmomship. Our 10 year old son Fygo has brain damage due to near drowning and has no use over his body, except for his eyes and ears. He lives with us at home and visits a special school. We try to live "a normal live" as much as possible.
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