I consider myself a highly sensitive person. Some might even call me too sensitive. I cry easily when I watch movies and get teary eyed when something moves me. If you would have asked me, I would have said, that I was totally in touch with my feelings
But it took a pandemic to realize that I wasn’t really processing my feelings: I was simply DEALING with them.
Oh, I was GOOD at dealing with my feelings.
I stomped around the house when I was angry, ranted about my grievances, had heart to heart talks ‘at’ my husband and retreated in my bedroom when I was feeling really sad. All of that for a brief moment, than I pulled myself up by the bootstraps and it was business as usual.
Because I was REALLY GOOD at dealing with my feelings, getting over ‘it’ and wiping my single tear away.
There was a lot tugging at those bootstraps, as I occasionally shoved a bag of chips down my throat before breakfast or decided to kill all my extra time, by binging Netflix series. Sometimes I felt an awkward lump in my throat or a heaviness in my step, but I just kept on stepping until I was, once again, OVER IT.
I was doing GREAT.
The pandemic gave me a new perspective on myself. My rollercoaster of a life came to a halt. I was in between jobs and stuck in a house with my family. And it was quiet. No job appointments, no social gatherings, no family outings. I had all the time in the world time to take care of myself. In the absence of all those demanding voices, I became aware of my own silent cry.
“You know that bad experience you had? You haven’t really processed that, you have just moved on. You’re still full of anger, frustration and grief and you are carrying it all around in your body. You smile but the corners of your mouth are getting heavy, like those bootstraps you keep pulling on.”
I started to listen to what my feelings were trying to tell me. I allowed sadness, discomfort and anger to show their faces. Now, it’s becoming okay to sit in the discomfort of negative feelings. I’m allowing them to exist.
I sit with my feelings, I process, I heal and then, when it’s time: I move on.
Let’s be real with each other: what are your healthy and/or unhealthy ways to deal with negative feelings? I would love to hear about it!
This is an original post to World Moms Network by Mirjam Rose of the Netherlands.
Photo credit to Sophie Burden. This photo was actually taken on a walking tour of Delft, Netherlands when World Moms, Mirjam Rose and Jennifer Burden, met with their children in 2018!
Mirjam was born in warm, sunny Surinam, but raised in the cold, rainy Netherlands.
She´s the mom of three rambunctious beauties and has been married for over two decades to the love of her life.
Every day she´s challenged by combining the best and worst of two cultures at home.
She used to be an elementary school teacher but is now a stay at home Mom. In her free time she loves to pick up her photo camera.
Mirjam has had a life long battle with depression and is not afraid to talk about it.
She enjoys being a blogger, an amateur photographer, and loves being creative in many ways.
But most of all she loves live and laughter, even though sometimes she is the joke herself.
You can find Mirjam (sporadically) at her blog Apples and Roses where she blogs about her battle with depression and finding beauty in the simplest of things. You can also find Mirjam on Twitter and Instagram.
I worry about not being the best mother for you.
About not giving you what you need.
I don’t have a manual.
All I have are my instincts, my feelings and my love for you.
No one tells me that I am doing a good job.
But there are plenty of hints and questionable looks suggesting that I am not.
So I worry.
My mind floods with fear that you might need more.
Something, someone to help you flourish.
And I worry that my love for you is not enough.
I carry this load and observe you daily, in silence.
I sigh of relief when I see you smiling and enjoying yourself.
My heart cringes when I see you struggling.
I’m afraid to share my thoughts, my worries.
To speak out about my growing sense of trouble.
About the signs that I see.
Am I seeing signs?
Or am I overthinking?
I struggle with acceptance.
Not because I can’t accept you for who you are.
Others can’t.
Their silent question marks,
weigh on me like judgement.
And I have a hard time shaking that off.
I battle with misconceptions and harsh opinions of strangers.
But when I look at you,
I can tell every little aspect of you that makes you so precious.
I see your infinite worth.
You are like that one flower in the flower bed.
The flower that keeps drawing my eye
Uniquely shaped yet oddly colored.
The flower that I admire the most.
This piece is a combination of my own struggles and the struggles of the mothers that I face around me.
Mothers who have a child that is struggling or going through a rough time;
Mothers who have a child that is developing differently;
Mothers who have a child that has special needs.
I would like to ask you to withhold your judgment or quick advice.
Just see her, and respect her process.
After all she is just like you.
She loves and wants the best for her child.
Do you ever worry about your child’s development?
How do you cope? What are strategies that help you?
This is an original post written by Mirjam for World Moms Network
Mirjam was born in warm, sunny Surinam, but raised in the cold, rainy Netherlands.
She´s the mom of three rambunctious beauties and has been married for over two decades to the love of her life.
Every day she´s challenged by combining the best and worst of two cultures at home.
She used to be an elementary school teacher but is now a stay at home Mom. In her free time she loves to pick up her photo camera.
Mirjam has had a life long battle with depression and is not afraid to talk about it.
She enjoys being a blogger, an amateur photographer, and loves being creative in many ways.
But most of all she loves live and laughter, even though sometimes she is the joke herself.
You can find Mirjam (sporadically) at her blog Apples and Roses where she blogs about her battle with depression and finding beauty in the simplest of things. You can also find Mirjam on Twitter and Instagram.
Today is my birthday.
It also marks the day that I’ll start to remain vague about my age.
A few years ago I turned 40,(No, I won’t give you specifics.)
And I remember a slight panicky feeling in my chest the night before.
I thought I was officially old.
But there was a life after 40 and it was a good one.
Some of my friends are approaching 50,
and they are making me feel pretty darn good about my age.
I have come to terms with myself and who I am.
The 40 something version of me is more outspoken and less anxious.
I feel older, wiser, and more at peace with myself.
Life has shown me that it is ever changing.
When I become too comfortable everything shifts and a new process begins.
The perfectionist in me has learned that there is no endgame, no specific goal to achieve.
I am an ever continuing work in progress.
But I do have the urge to be hopeful, helpful.
To spread kindness and positivity.
I want to fulfill my hopes and dreams.
I want to love and to be loved back.
Never stop learning and continue to grow.
My birthday is always at the same time of the year,
that I start to reflect and set my goals for the next year.
Oh, and what a crazy year it was.
This year I will just take a moment to count my blessings.
I have no specific birthday wishes or wishes for 2017,
only to be extended the grace to enjoy a fulfilling life.
I want to live my live to the fullest,
and not being held back by fear at trying to fulfill my hopes and dreams.
And I want to dance be silly and artistic.
Now excuse me while I go and eat some cake!
What are your birthday wishes?
Have you set your goals for 2017?
This is an original post written for World Moms Network by Mirjam in the Netherlands.
Mirjam was born in warm, sunny Surinam, but raised in the cold, rainy Netherlands.
She´s the mom of three rambunctious beauties and has been married for over two decades to the love of her life.
Every day she´s challenged by combining the best and worst of two cultures at home.
She used to be an elementary school teacher but is now a stay at home Mom. In her free time she loves to pick up her photo camera.
Mirjam has had a life long battle with depression and is not afraid to talk about it.
She enjoys being a blogger, an amateur photographer, and loves being creative in many ways.
But most of all she loves live and laughter, even though sometimes she is the joke herself.
You can find Mirjam (sporadically) at her blog Apples and Roses where she blogs about her battle with depression and finding beauty in the simplest of things. You can also find Mirjam on Twitter and Instagram.
When your family makes a move to another country across an ocean, one of the main priorities of a mom is making sure her children are having as smooth of a transition as possible to their new surroundings. When just walking down the street to get in the car can be an experience in hearing a new language, it can be a very intimidating experience for children to adjust to their new surroundings. School can be one of the hardest adjustments to make no matter where you move.
A year ago, I had a fourth grader and a second grader in a public elementary school in the U.S. Their typical day was to get to school before the 8:05 a.m. bell and then have seven hours of constant instruction all day long with the exception of a 30 minute lunch and a 15 minute recess. Then, they would come home, and we would hurriedly try to get the homework done (30 minutes of reading per night with a reading log to sign, 15 minutes of math practice per night with a math log to sign, and then whatever other homework was assigned for that evening by the respective teacher). Most days the homework was interrupted by running to after school activities, trying to eat together as a family, and getting to bed at a decent time.
To most parents, this sounds pretty typical…at least for the U.S. But, what I am not including here is the attitude my kids had towards school in the U.S. I did not mention that on top of the work and instruction and the meager 15 minutes of recess they would get a day that they were also taking a four hour long bench mark test for one subject about every week (yes, even my seven year old second-grader!). They could lose their little 15 minutes of recess and have to sit in silence because they talked too much in the cafeteria at lunch. They were being constantly assessed and assigned (major or daily) grades, and then tested again. They HATED doing their homework and they begged for just some kind of free time to just chill out.
I couldn’t blame them, their days were jammed packed, and if they didn’t perform and take the benchmark tests, then there was no telling what kind of score they would get on the STAAR standardized test given in Texas. The test which is supposed to prepare the students for academic excellence. During the battery of STAAR tests, the walls were covered with black bulletin board paper, and labels were taken off of water bottles in case the students may get any answers from the walls or water bottles….water bottles, really!!??
Yes, they take the labels off the water bottles so the kids can’t even see any numbers during the tests. They sit for hours on end and cannot even read a book when they are finished in case someone who hasn’t finished may see a word on a page and give them an answer on the test. They cannot talk during lunch during the testing time for fear they may exchange answers. All of this in the name of academic excellence and getting my children ready for the “real world”.
As an educator, I understand the need for assessment of students. There has to be a marker to know the level of understanding of a child. I do believe there is a time and place for assessment, but not all the time, and not taking up so much of the very precious finite time of elementary students. I understand how the high stakes standardized testing began. The idea was a good one. There were schools that were performing very low in contrast to schools which were performing very high. The concept was simple: give the same test across the board to all public school students and that would get everyone on the same page. However, somewhere along the way, high stakes testing turned into scrutinizing teachers, pressuring students, and increasing the rigor of these tests every year. This led to more practice testing in the classroom which led to less recess time and more stressed out teachers, students and parents. It is as if the testing is a runaway train that I fear no one will be able to stop.
My third grade daughter had a panic attack here at her new school the third week because she didn’t know if her presentation at school with three classmates was going to be for a major or a daily grade. Her teacher had to call me, and I had to go to the school to pick her up. That is when I explained the type of system we came from where the children were literally graded on every. single. thing. Her teacher explained to me that the children are formally assessed here a few times a year, but the majority of the time is spent with hands-on activities, and cooperative learning and interaction with one another in the class. The children are mostly graded informally through demonstration of knowledge on a topic. The teachers actually take the time to get to know each child as an individual…not just how to get them from point A at the beginning of a school year to point B at the end of the school year. I felt myself let out a huge breath that I didn’t even know I was holding. It felt as if the pressure I had felt for my children lifted, and it also lifted from them as well. Imagine, elementary education given in an age-appropriate manner!!!
Last week, my son came home and told me he had to finish his spelling homework. Without me telling him to do so, he went to his back pack got out his book and sat down to complete it without complaining and without any nagging. My daughter came home with a project about an author study. She had her snack after school and immediately sat down at the computer and began to type in her author’s name to do a computer search for information. Who are these kids? They can’t be mine…my kids were getting burned out in fourth and second grade. They hated homework and school. This fifth and third grader here in The Netherlands are completely different children. I have two children who LOVE to go to school here and who are learning and who are not having so much pressure to perform…
The school my children are attending here is an international school which follows many of the Dutch school guidelines. One of the things both of my children love the most here is that the school offers them TWO recess times per day. A 15 minute recess in the morning and a 30 minute recess after lunch where they have unstructured play time, and no one is having them sit inside and finish work they didn’t complete (like our old school). They have time to be outside in the fresh air and run and play or just talk…it doesn’t matter…there are no right or wrong ways for the kids to have recess.
They also are dismissed from school each Wednesday at 12:30 p.m. This is another HUGE perk for my kids. I have seen with my own eyes their attitude about school changing and their engagement in their school work go up. I have seen that their teachers are actually learning about my children here. Social skills here at their school are just as important as the academic skills. They both have homework, but it is assigned if work was not finished in class or if there is a special project to do for a particular unit. There are no logs to constantly sign or meaningless worksheets coming home.
Some may say, how are they going to be prepared?? Are they learning enough? I would have thought that also coming from the system we were in last year. I would get daily updates in my email about test grades and classwork. Here, the grades are not entered into the computer, and I have found that I have taken a step back. In turn, my children, have felt that pressure ease as well. They are taking tests at school, but they are meaningful, and not four hours long every week. My daughter gets to go to the school garden to see science in action with her class and learn about fungi and insects.
There have been many articles written about the correlation between recess and academic achievement. Almost all of them say that more recess and break time for children equates to better learning and attention in the classroom. This particular article is written by an American teacher who taught in Finland and found that for every 45 minutes of instruction, the students (and teachers) would get a 15 minute recess. He was skeptical at first but saw the results with his own eyes. And really, isn’t this common sense? We as adults, need to step away for a few minutes and have a coffee or talk with friends. We know when we have been pushed too far and need a break. Why do schools constantly push students even when the students have reached the point in a lesson where they are not paying attention anymore?
As a former teacher before I stayed home with my children, I have seen the public school system in the U.S. change in the 10 years since I have left education. I have seen more stressed out children, teachers, and parents (myself included) since I was an educator. Seeing education in practice here at the school my children are attending, I see what elementary education was supposed to be. The way elementary education is taught here is what I was taught it was supposed to be in my university courses, and how I implemented it in my own classroom.
After moving here and seeing the attitude change so much in how my own children view school and how much they have learned, I am convinced of a less pressure-based environment, I feel that the meaningful instruction which takes place when the children are truly engaged in the lesson is so much more valuable than powering through a lesson in which the students are not paying any attention to because of no down time and constant pressure to perform.
Having time at school for unstructured play for my own children has made a world of difference in their academic lives. They are developing their social skills and problem-solving skills during their guaranteed recess time (which is not taken away from them as a punishment). Even when we are going to after school activities, we are not as stressed about long bench mark tests the next day. They may still have homework when we get home, but the feeling of all the stress and pressure seems to have lifted on all of us. And, they actually WANT to do the work because it is meaningful to them.
The conferences I had with their teachers last week reflect exactly what I am seeing at home. Both of my children are well adjusted and happy, and are performing at or above grade level in their classes. THIS is what I wanted for my children. I want them to enjoy learning. I want them to have friends, and develop into people that other people would actually like to be around.
Childhood is such a precious time when so much of one’s personality is developed. That time can never be given back. I fear that the lack of downtime and recess time at school is hurting elementary children. There will be plenty of time for hours of homework and test stress in high school and university level education.
I know that our time in the Netherlands will eventually come to an end because such is the life of an expat, but until we have to leave, we are ALL enjoying the lack of overload we were all feeling at our old school.
Does your child’s school give regular recesses? Have you noticed if it helps or hinders your child? Do your children have regular testing in their school? How does they handle it?
This is an original post to World Moms Network by Meredith. You can check out her adventures as life as an expat in The Netherlands on her blog www.gettingonthebicycle.blogspot.nl
Meredith finds it difficult to tell anyone where she is from exactly! She grew up in several states, but mainly Illinois. She has a Bachelor of Science degree in Elementary Education from the University of Illinois at Champaign/Urbana which is also where she met her husband. She taught kindergarten for seven years before she adopted her son from Guatemala and then gave birth to her daughter two years leter. She moved to Lagos, Nigeria with her husband and two children in July 2009 for her husband's work. She and her family moved back to the U.S.this summer(August 2012) and are adjusting to life back in the U.S. You can read more about her life in Lagos and her adjustment to being back on her blog: We Found Happiness.
My mother used to say the same thing whenever I was sick: “Well, your hands are not sick.”
She expected me to do my chores and not to make a big deal about being sick. It was a motto she lived by. When I think of her in those days, I cannot picture her sitting down or lying in bed. She was always busy taking care of us and taking care of the house. I can almost imagine her feeling sick in the morning and saying to herself: “Well your hands are not sick,” and getting on with business as usual. I have tried to live up to this motto as long as I can remember.
This image of a mother that takes care of her family regardless the circumstances, was printed in the core of my being.
When I got diagnosed with depression, I was deeply conflicted within myself. Every moment that I needed for myself, every day that I couldn’t go on as usual, troubled me. I judged myself. There is always something the matter with you. Are you sick again? I felt like a sad excuse for a mother. I pitied my children and husband for having to live with me. Being sick has always been a powerful trigger for me to sink deep into depression.
In 2011 I got diagnosed with depression, which led to a long struggle with dealing with my depression and undergoing extensive therapy. Just as I started to feel a little bit better in 2013, I broke my right shoulder and as it started to heal, I had to have my gallbladder removed. After that, a long period of feeling sick and dealing with throat problems, led to a tonsillectomy in 2015. In 2016 my doctor referred me to a rheumatologist. The word rheumatoid arthritis was mentioned. I’m still in the process of finding a diagnosis and proper treatment.
But I am doing fine. In a sense, I am grateful. It is easy to find joy when you’re healthy and pain free. When you’re walking in the sunshine it isn’t as hard to be hopeful. I have learned to enjoy every single ray of light when walking in the shadows. I do have my occasional pity parties, and I indulge in them, because I allow myself to feel, to grieve, to be sad when I need to. But my pity parties end and when they end, I pick up positivity and make the most of what I have.
Depression always lurks in the shadows. But it is more a kind of melancholy that accompanies me, reminding me of its existence. It doesn’t bother me as much, nor does it scare me the way it used to.
I feel fine, I feel happy. We’re almost in the 11th month of 2016 and I have had approximately two days this year without physical pain. The other days have fluctuated between noticeable pain, manageable pain and excruciating pain. All things considered I still feel blessed. It could have been so much worse. I still feel privileged and grateful.
I have reshaped my image of what a mother is supposed to look like. No longer is she shaped like a rock, a bulldozer, a mechanical machine. She is covered in flesh, imperfect, she bleeds, she falls, she lifts, she cries, she smiles. She is shaped like a human.
How has your concept of motherhood changed since you had children?
This is an original post for World Moms Network written by Mirjam in the Netherlands.
Mirjam was born in warm, sunny Surinam, but raised in the cold, rainy Netherlands.
She´s the mom of three rambunctious beauties and has been married for over two decades to the love of her life.
Every day she´s challenged by combining the best and worst of two cultures at home.
She used to be an elementary school teacher but is now a stay at home Mom. In her free time she loves to pick up her photo camera.
Mirjam has had a life long battle with depression and is not afraid to talk about it.
She enjoys being a blogger, an amateur photographer, and loves being creative in many ways.
But most of all she loves live and laughter, even though sometimes she is the joke herself.
You can find Mirjam (sporadically) at her blog Apples and Roses where she blogs about her battle with depression and finding beauty in the simplest of things. You can also find Mirjam on Twitter and Instagram.
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.
When your family makes a move to another country across an ocean, one of the main priorities of a mom is making sure her children are having as smooth of a transition as possible to their new surroundings. When just walking down the street to get in the car can be an experience in hearing a new language, it can be a very intimidating experience for children to adjust to their new surroundings. School can be one of the hardest adjustments to make no matter where you move.
My mother used to say the same thing whenever I was sick: “Well, your hands are not sick.”
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.
