Jennifer Burden, the founder of World Moms Network, asked me to share my family’s COVID-19 story from India. I have been reluctant because our hearts go out to so many I know, who have lost family and friends near and dear to them in India and across the world, from COVID-19. I hope our story can help paint the picture of how the virus is affecting the daily life of families of health workers, around the world, to our global readers. So, with that intention, I tell my story…
My husband and I are so different, we come from different cultures and languages within India, however, one of the few things that bind us together is our love for travel. We had planned to spend our 15th wedding anniversary somewhere trekking up a mountain or looking at art pieces in a museum. Thankfully, we have similar tastes in the type of travel we do, and so that is one thing less to quarrel about in our lives!
Instead of celebrating our anniversary in some far off exotic location, we knew that we would celebrate our love and togetherness from the quarantined confines of our home, as times were now difficult and different. And that was okay too.
BUT – Today I dreaded waking up to our wedding anniversary.
The author’s husband who is a physician.
You see, my husband is a frontline healthcare worker, a pulmonologist, and is involved in the treatment of patients in the COVID-19 ward in the hospital where he serves. He is in contact with hundreds of COVID-19 positive patients every single day. Several days before our anniversary he was down with a high-grade fever. Slowly this took a worrisome enough turn, for him to call up the technician to come home to test him. Thus, the whole day of our 15th wedding anniversary was spent waiting in prayerful anticipation. Well, to cut the long story of the day short, he turned out to be positive for COVID-19. This was definitely not the anniversary we were expecting, and we were now worried.
Most healthcare workers have been facing enormous challenges – physically, mentally, and emotionally. They see in the eyes and hearts of patients, so much loneliness, pain, and fear, that, that in itself drains them out completely. It can be very overwhelming and many times the doctors and nurses die hundreds of deaths inside, as they let a life go.
As his wife, I seek to understand, yet, sometimes I do not. At times, I can sympathize. Other times I get frustrated, caught up in my own other problems or worries.
We have missed him at times when he used to come home very late, long after my son and I had fallen asleep. At other times, I have learned to stay indifferent. I remember, once when we were on our honeymoon, he received a call from one of his patients. I don’t always have him to myself. Being married to a healthcare worker has been a very enlightening journey, living with him and his profession for the past 15 years.
The author’s family.
At times, he indicates that he understands and explains patiently how he cannot make more time for us. At other times, he is full of his own joys or sorrows of work.
In the midst of such a life, where I did not know when he would be back home for the day, things had only worsened in the past 8 months. Being part of the first responders in the fight against the coronavirus, I cheer for him.
Every night our family wait, patiently. I say, ‘patiently’, because, the hardest part of this COVID-19 pandemic was always to constantly wonder when my husband was going to contract it. I never doubted that he wouldn’t contract it. After all, his whole day, more than 12 hours, was spent with people who had contracted it. I just prayed and hoped that at least he would be asymptomatic or he would recover very quickly.
Now, that worry was gone. He was COVID-19 positive, and I knew how the next fortnight was going to be. All of the regular COVID-19-words now stared at my face – quarantine – social distancing – uncertainty – grocery shopping for the next 15 days, etc.
I decided to take one hour at a time and gave my attention to only the most important tasks of the immediate hour. The most important thing to do, of course, was to take care of my husband.
The next thing I decided was to get off my phone, unless absolutely necessary, such as the phone calls from my parents or from my husband’s colleagues. I uninstalled all the Apps from my phone temporarily, and that is probably the best decision I have ever made in this current digitalized year.
One thing that helped me stay positive and resilient is an everyday meditation regime, and the online group meditation sessions every Sunday morning with our Heartfulness community.
I suddenly realized how close my husband was, with his colleagues, friends, seniors, juniors, students, and the Dean in his workplace. I entered his workplace that I wasn’t as aware of, prior to his sickness in our busy lives. There was an outpouring of love, concern, affection. Most days he was on his phone, when he had the energy, talking to his students, or discussing regimes and protocols with his colleagues. He never gave me the impression that he was sick. But he gave me a lot of reasons to worry too, as he was still symptomatic with fever, respiratory infection. However before I knew it, he was back on his feet and on his job (from home, as we had to be in quarantine for few more days).
One hour at a time, one day at a time, we let time pass at her own pace. The hours were long, but the days were short, as they say.
Fifteen days, after our 15th wedding anniversary, we tested again, and the results were negative. He is back to work now, and treating patients, in one of India’s hotbeds of COVID-19 – Chennai.
The author and her husband.
Our wedding anniversary will have to wait until another day, another year, but I am proud of him for being a part of India’s fight against the pandemic. He makes me proud.
Purnima Ramakrishnan is an UNCA award winning journalist and the recipient of the fellowship in Journalism by International Reporting Project, John Hopkins School of Advanced International Studies. Her International reports from Brazil are found here .
She is also the recipient of the BlogHer '13 International Activist Scholarship Award .
She is a Senior Editor at World Moms Blog who writes passionately about social and other causes in India. Her parental journey is documented both here at World Moms Blog and also at her personal Blog, The Alchemist's Blog. She can be reached through this page .
She also contributes to Huffington Post .
Purnima was once a tech-savvy gal who lived in the corporate world of sleek vehicles and their electronics. She has a Master's degree in Electronics Engineering, but after working for 6 years as a Design Engineer, she decided to quit it all to become a Stay-At-Home-Mom to be with her son!
This smart mom was born and raised in India, and she has moved to live in coastal India with her husband, who is a physician, and her son who is in primary grade school.
She is a practitioner and trainer of Heartfulness Meditation.
Ever since I was a little girl – even just a few months ago – I always thought that my mom was immortal. But she died on December 11, and left us devastated. Her name was Lalao, and she was just 61. I am a mom, and moms are supposed to be strong, right? But how can I pretend to be strong when I lost my confidante, my best friend, and the one who made me, in such tragic circumstances?
After freeing herself from domestic violence, Mom took care of my brother and me, all by herself. She faced hardship, poverty, injuries, and sacrificed her dreams for giving us a good education and a decent life. And through laughter and tears, she stood tall. I remember she had to work during nighttime to make ends meet, but still found some hours to pamper us before or after school hours. She was very severe with us, and we sometimes felt oppressed because she always asked us to do our best, especially regarding our studies. She, along with my grandma, used to sew suitable clothes for us, so that we don’t feel miserable. And we were happy, for a certain time.
A few months after my father died, Mom reconnected with a man she dated in high school. That guy hated us and wanted to have his own child with my mom. In 1995, she had an ectopic pregnancy which required surgery and left her unable to bear children. Her man started to cheat on her starting from the day he knew she won’t be able to have children anymore. Violence was back in our life, but it was different from our father’s style. This violence was more psychological, and at some point our family exploded because he asked Mom to choose between him and us. Mom wanted to stick with him until the day she found out that he had a baby with another woman. That was in 2001.Mom went into a deep depression. I know these were really hard times for her, and I feel guilty because I tried to escape from all this suffering in the best ways I could: studies, activism and – soon, marriage. I was just 22 while I left my mom and brother for my new life with my husband. I didn’t want to be a burden for my mom anymore. I found a job and paid for my own studies.
Eventually, my mom found a new job, and her life tremendously improved. She was happy again but was anxious about my brother who struggled with his studies. I will always remember her smile and tears of joy while my son Tony was born. I think she saw him as a kind of achievement. For the past 3 years, she was totally involved in community projects, helping the poorest. She was full of energy. Today, when my youngest son, Hugo, asks why Mamie “left”, I still really can’t find suitable words to explain the situation.
This is the most awful situation I’ve ever experienced in my life. At 2pm on December 5, Mom called me, saying that she had severe abdominal pain. We had met the previous day and she was perfectly normal. My husband jumped in his car to take her to the hospital. This was not the first time – my mom was often sick with serious stomach pains, but we didn’t knew what was causing it. Her stomach sometimes inflated like a balloon, and it was so painful that she couldn’t even wear a shirt over her abdomen. Just as quickly, her symptoms would disappear.
So, the morning my husband rushed her to the hospital, we thought it would be the same. She was convinced that she would be back home a few hours later. I had to work, but I tried to find time to stay with her at the clinic. At first, the doctors said she had salmonella, and then typhoid, but the treatment they gave didn’t make her feel better.
I was worried, but still felt confident. I was also busy because my kids had their mid-term examinations, and the premiere of my movie on civil resistance was that same week. I briefly saw Mom on the day of the premier, and she said, “Good luck tonight!” She watched the movie on my laptop and she liked it. I really missed her during the premiere. The day after, I was running a training while she texted me. The doctors told her she urgently needed surgery. Finally, they had diagnosed her, not with typhoid, but a bowel obstruction.
She was transferred to a different hospital, more equipped for this kind of surgery. We slept only for a few hours that night. On my birthday, she went for surgery early in the morning. She finally came out of surgery at 2 p.m. The doctors explained that there had been complications during the surgery. It appears that someone had accidentally left a pad or a towel in her womb during her surgery after the ectopic pregnancy in 1995. The foreign object had been lodged in her bowels, which was the source of the obstruction. They had to cut 40cm of her intestines and create a bypass. Ther surgery was long and complicated, but she was alive. I thanked God, thinking that her misery was finally over.
We were only allowed to visit her twice a day: at noon and at 6pm, because she was still in the emergency unit. I talked to her, and she was fully conscious. She wanted some water but it was forbidden. I wrapped her chaplet around her skinny arm and she asked for prayers. Friday night went well. I didn’t want any party for my birthday, given the situation, and my kids didn’t really understand that (they were looking forward that party for a long time). On Saturday, the head of the emergency unit asked called me to her office. I was scared. She said the situation was critical because my mom had had a stroke that morning. They managed to save her, but they were concerned about future stroke. I begged her to do her best.
I saw Mom again on Saturday evening. She looked very tired and she was thirsty. She said she couldn’t feel her legs anymore and the doctors explained that it was because of her disc herniation (a problem she had after a car accident in 2010, another sad story). I don’t exactly remember what I said to her that evening, when I left. I just remember I urged her to hold on. While I heard a car arriving in our yard around 2 a.m., and saw my husband standing on the door, I didn’t want to think to the unthinkable. But the unthinkable had occurred.
My mother died firstly as a consequence of a bad operation she had 21 years ago. She lived with a pad in her abdomen, and that was probably the root cause of all her problems. Then, she died because of a false diagnosis. If the bowels obstruction was detected the very first day – through a basic exam – things would have gone differently. She died of a “massive pulmonary embolism” on Sunday, at 01:25 a.m., because she was exhausted by the pain she felt from the previous Monday till that very minute. I think she gave up. Too much pain and too much suffering in a single life! Too much violence, too many tears, too much sadness! She said, “Enough is enough,” and she walked away. I had to call my brother, who lives in Morocco, to tell him the bad news. That broke my heart once again. He arrived a few days after, a torn soul.
So, what are we up to, now? We moved to Mom’s house with our kids because we wanted to keep her memory alive. It’s a rental but we hope that someday we’ll be able to buy it. My brother is back to Morocco, and he tries to grieve in a constructive way. As an activist, I feel I won’t find peace if I don’t do anything about this false diagnosis, and about healthcare in general, in Madagascar. Do you know that here, you can still die from fever, or from cholera, or from whatever disease, because average people can’t afford drugs? As 90 percent of people live with less than $1.25 a day, where can they find money for healthcare? And the government does nothing! Rich people go to Mauritius or South Africa to get treatment. Average people like us go to public hospitals or private clinics where you can die because there’s no oxygen, or because of a power shortage. Poor people just die in the streets, from starvation, or from treatable conditions. The doctors say, “Don’t blame us, blame the State! We are poor victims too!” Perhaps. What can I do in order to change this system? Any idea is more than welcome!
I don’t want Mom’s live to be wasted like dust in the wind. I need to do her justice, but without going through a trial because corruption ruins everything here. Please, moms, help me to find my soul back again. Tell me what I can do for my mom, my immortal hero.
This is an original post for World Moms Blog by Ketakandriana Rafitoson, our contributor from Madagascar.
62,000 people. That is the estimated number of Haitians who are still displaced from the 7.0 earthquake that shook Haiti in January 2010; a heartbreaking disaster that claimed over 200,000 lives and displaced as many as 3 million people.
Kendy,
Naomie,
Emilien,
Mrs. Jean-Donald
Elouse’s aunt
Elouse’s four cousins
….this is only 1% of the 900 people who lost their lives in Haiti to Hurricane Matthew in October 2016.
900 lives…fathers, mothers, teachers, grandmas, little brothers, babies…lost in the waters of a sea that came on land and washed it out. A land crushed under debris created by a 145mph wind that knocked down concrete walls and tore down palm trees as if they were saplings just transplanted from a kindergarten classroom the day before.
To say that we feel for our sisters and brothers in Haiti is an understatement. My heart is heavy and it wants to scream because although it believes that we, together, will make things better, it is hard to see the road ahead when there is such a harsh wind blowing in one’s face.
To look at the state of Haiti now, with the lack of food and access, and the abundance of poverty, one may not remember how powerful a nation Haiti actually is.
In the 18th century, Toussaint-Louverture, Henri Christophe and Dessalines revolted in an effective guerilla war against the French colony. All three had been enslaved: they successfully ended slavery and regained freedom for the nation. They did this in 1791 against the French, in 1801 against the Spanish conquest, and in 1802 against an invasion ordered by Napoleon Bonaparte. They renamed Saint-Dominique after its original Arawak name, Haiti, which became the second independent nation in the Americas.
Such history should not go unnoticed because it is a significant example of the perseverance, love, and determination that courses through the veins of Haitians.
If I could say anything to my sisters and brothers in Haiti right now, if I could speak at all, I would say this:
“In the midst of the chaos; the heartbreak; the loss of life; the search for lives; the feeling that rebuilding will simply take too much energy…again; the pain; the tears that will run dry; the anguish, and all the feelings that weigh down your soul and may make you doubt your abilities, please remember who you are, what you have accomplished, and what you are capable of doing. You do not stand alone, because we stand with you. You do not sit alone, you do not swim alone, you do not cry alone, you do not hug your loved ones alone, you do not cry alone.
You do not cry alone, and you will not rebuild alone.
We are with you.
We are with you and we will laugh together again and you will see that we can get out of this. Please believe with me. I know it’s hard right now, and I do not pretend to understand what you’re going through, but please believe with me”.
To anyone who would like to assist, you may consider contacting any and all of these organizations:
Please remember that there is also a cholera outbreak because of lack of clean water, and it is also claiming lives. Help is needed most urgently! Please lets do what we can.
My heart goes out to everyone affected by this hurricane, not only in Haiti but in neighboring countries including the southern US states. Sending you all love and happiness in the hopes that you keep believing and looking forward to another sunrise.
Have you ever been directly affected by a devastating storm? What would you say to those who are trying to rebuild their lives?
This is an original post to World Moms Blog by Sophia at ThinkSayBe. Photo credit: Ricardo’s Photography. This picture has a creative commons attribution license.
I am a mom amongst some other titles life has fortunately given me. I love photography & the reward of someone being really happy about a photo I took of her/him. I work, I study, I try to pay attention to life. I like writing. I don't understand many things...especially why humans treat each other & other living & inanimate things so vilely sometimes. I like to be an idealist, but when most fails, I do my best to not be a pessimist: Life itself is entirely too beautiful, amazing & inspiring to forget that it is!
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.
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.
Life after witnessing a miracle, is challenging. There other words I am looking for, but ‘challenging‘ is the truest of them all. With it I rank faithful, blissful, hopeful, trusting, invigorating, and inspiring as next in line, on a list of many words. (more…)
I am a mom amongst some other titles life has fortunately given me. I love photography & the reward of someone being really happy about a photo I took of her/him. I work, I study, I try to pay attention to life. I like writing. I don't understand many things...especially why humans treat each other & other living & inanimate things so vilely sometimes. I like to be an idealist, but when most fails, I do my best to not be a pessimist: Life itself is entirely too beautiful, amazing & inspiring to forget that it is!
World news cycles through our Facebook feeds, blogrolls, and across our Television screens at lightning speed these days. Just four weeks ago most of our nation was riveted by the play by play updates about Ebola, and it was impossible to escape the news. Was Ebola coming to the US? Would there be a domestic outbreak? Did the CDC make the right calls once it was here? Were the health workers who contracted the disease while risking their lives treating those struggling going to survive? Should there be a travel ban? Would there be a vaccine? Ebola was everywhere! Then, even before the last American infected left the hospital a healthy man, Ebola all but disappeared from the news.
But here is the thing, Ebola itself did not disappear at all. Instead, it continues to threaten the lives of tens of thousands of people in West Africa and has already taken the lives of over 5,000 men, women, and children. 5000. Think about that number for a second; the reverberating loss that number represents. Thousands of spouses lost the love of their life, thousands of families lost a brother, a sister, a son, a daughter, an aunt, an uncle, a friend. Thousands of children lost their mothers or fathers or almost incomprehensibly both of their parents to this disease.
It is not stopping. It is not slowing down. It is only getting worse.
People are dying in the streets while they wait for treatment. There are not enough beds for the sick, supplies for the clinics, or medical professionals on the ground to gain control of the situation. They need our help, and they need it now.
The founding members of WGIRLS INC, each thankful for the opportunities their respective upbringings provided, came together to create a way for women to express that gratitude through service to those less fortunate. We create and deliver programming and fundraising initiatives that support access to safe housing, creature comforts, medical care, education, and career opportunity for those less fortunate. While WGIRLS chapters focus primarily upon efforts in their respective local communities, in times of international crisis, we come together to raise awareness and funding for those in need wherever that need may be.
This holiday season, many of us will gather around tables to give thanks for our blessings, spend time laughing and sharing with friends and family and exchanging gifts with our loved ones. At the same time, however, some of our brothers and sisters in West Africa will be desperately seeking medical care to survive. For them there will be no hugs or loved ones surrounding them. There will be no celebrations or laughter, but there is an opportunity for a gift. The gift of a fighting chance against Ebola.
Doctors without Borders, the premier organization in the fight against the disease is in desperate need of additional funding. As one of the few non-governmental organizations treating Ebola in West Africa their resources have been stretched to the limit attempting to treat the sick and control the disease.
A gift of your support will help provide the funding needed for additional medical personnel, treatments, beds, tents, and medical supplies.
Most importantly, your gift will give hope to the thousands of families impacted by this deadly disease.
Thank you in advance for joining us in the fight! Happy Holidays to you and yours!
World Moms Blog is an award winning website which writes from over 30 countries on the topics of motherhood, culture, human rights and social good. Over 70 international contributors share their stories from around the globe, bonded by the common thread of motherhood and wanting a better world for their children.
World Moms Blog was listed by Forbes Woman as one of the "Best 100 Websites for Women 2012 & 2013" and also called a "must read" by the NY Times Motherlode in 2013. Our Senior Editor in India, Purnima Ramakrishnan, was awarded the BlogHer International Activist Award in 2013.
62,000 people. That is the estimated number of Haitians who are still displaced from the 7.0 earthquake that shook Haiti in January 2010; a heartbreaking disaster that claimed over 200,000 lives and displaced as many as 3 million people.
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.
