I took three kids plus a friend to a toy store on a Saturday afternoon in December in one of the busiest malls in Cape Town to do Christmas shopping and I didn't hate it. Read why on my Reviews Blog: Link
You know how if you don’t say something out loud then it isn’t really real? I’ve avoided talking about this outside of my immediate social circle because it really is a miserably boring topic: I have sore feet. All the time.
My feet started hurting in January this year. It was after a particularly brutal heatwave. The skin over the balls of my right foot started hurting. I thought it was because I had done a lot of walking in my standard uniform shoe – the Haviannas. Because it was hot, I thought that maybe my foot had gotten sweaty and rubbed against the shoe. The area on my foot felt raw – hot and burning pain, and yet it wasn’t sore to the touch. I couldn’t see anything on the outside. So I ignored it, waiting for it to go away.
The pain didn’t go away. It spread to the rest of my foot. And then it spread to my other foot. Both feet burned all the time – a hot, burning pain, but from the inside. I could hardly walk.
It felt like the layer between my skin and my muscles or tendons was inflamed. My feet ached and burned all the time, from the inside. The outside felt completely fine. I Googled and Googled, but nothing seemed to fit. Eventually I went to the doctor who said it sounded neuropathy, the leading cause of which is diabetes. That scared me. I was sent for all sorts of blood tests including a fasting diabetes test. I have to say the waiting period for the results was quite scary. The tests eventually came back: all was fine. Phew, but also ???. So if it wasn’t any of that stuff, what was it? I convinced the doctor to give me some anti-inflammatories in case they helped. They didn’t.
The doctor suggested I visit an orthotist to see whether it wasn’t something structural that was causing the pain, but it wasn’t. What the orthotist did say was that the Haviannas are a no-no. Those 30 pairs of Haviannas in my cupboard? Can’t wear them.
She said she thought it could be some kind of neuropathy and recommended I go see an orthopedic surgeon. Which I did. Very nice chap actually. He did all sorts of tests. Nothing wrong. He said it sounded like what he calls "Burny Foot Syndrome" aka as neuropathy and suggested I see a neurologist.
By this time, I am feeling completely miserable about the situation. Each time I saw a different specialist I was hoping they would find something ‘wrong’ so that we knew what we had to fix. But no one was finding anything; and in the meantime my feet were aching all the time. Burning hot pain. The pain was causing my anxiety to spike like crazy. I wasn’t having a lovely time.
Eventually I see the neurologist who does all sorts of weird tests including putting electrodes on me and shocking me, and sticking pins into my legs and feet. That wasn’t fun. I much preferred the lovely orthopedic surgeon chap. But what the pin-poking neurologist did do for me is eventually give me a diagnosis after sending me for more blood tests: Small fiber sensory poly neuropathy (SFSN). Cause: unknown.
It’s a bit of a mindf#ck actually. It’s very hard to deal with the fact that I have a chronic condition, cause unknown. No cure. It’s hard because it’s a big deal and it’s a small deal, all that the same time. It’s a small deal because there are so many other people who are dealing with FAR bigger problems that hot, burning feet. My sister being one of them. She has chronic oral dystonia. Another friend has debilitating fibromyalgia. I feel ashamed to complain about my burny feet. And on the other side is the struggle to accept that I have a chronic condition. How can this be so? SURELY there must be a way to fix it? You can’t just have something wrong and not be able to fix it??? That part is hard to deal with.
And so I tried to ignore it. I thought if I ignored it, if I didn’t pay it attention, it wouldn’t really be there. SORRY CAN’T HEAR YOU FEET, LALLALAAA. Except that the body is a powerful thing. And my body was getting constant messages of pain. My body was sending an alert to my brain all the time BE CAREFUL, THERE IS PAIN! PAIN MEANS DANGER! DO SOMETHING! FIGHT OR FLIGHT! HERE, LET ME THROW SOME MEGA STRESS HORMONES IN YOUR BLOOD SO YOU CAN FIGHT THE DANGER! Here I am singing to myself with my hands over my ears lalalaaaa but my body wasn’t caring. It was doing it’s thing. So now I had sore feet AND I was extra anxious. Lovely.
I went to see my psychiatrist who I love dearly (I have the best shrink in the world) to ask her whether we shouldn’t up my regular ADs which clearly weren’t working because hello anxiety overload! And then she explained that even though I can ‘logic’ my way through a lot of stuff, my body wasn’t caring about my ‘I just wont buy into that pain thing’ and that the pain was causing a stress response in my body which was increasing my anxiety. She asked me how often my feet hurt. I told her all the time. She asked me whether they were hurting right now. I told her that they hurt right now. Right Now and All The Time. She said no wonder I am feeling anxious.
My psychiatrist suggested that I start on a low dose of Amitriptyline (something the neurologist had suggested as well, but I wasn’t keen to try until I had cleared it with my shrink). Amitriptyline is actually an anti-depressant but is also used to treat chronic neuropathic pain (pain due to nerve damage) and fibromyalgia. It is often the first line treatment for people with chronic pain. As far as I understand, the medication interferes with the messages of (chronic) pain to the brain. It doesn’t always work, but touch wood – it seems to be working for me. I can now go for several hours without thinking about the pain. It really has helped a lot. My anxiety is back under control and my feet definitely feel less painful / burny. I am so relieved that we have found something that seems to help. It would be great to have no pain at all, but compared to how bad things were – I am very grateful. Added bonus – the Amitriptyline has made me sleep better too. Yay!
So there you have it – the sad, boring story of my sore feet. I am sharing it because I am so relieved to have found something that has helped me that I wanted to share it with you, in case it could help you too.
And in a crazy turn of events, an old infertility friend of mine has just been diagnosed with it too! We met online about 12 or 13 years ago. We had both lost children, both struggled to have more. And here we are, so many years later with yet another chronic condition to deal with. We beat infertility back then Julia, we will beat this too.
And now I am taking my painful, burny feet to bed because we are all tired. (My feet hurt a lot at the end of the day. But less than they did before!)
Kate really loves me. All my children love me, but Kate really loves me.
Marko and I joke around with the children sometimes, we make them say who is the boss, or who is the better dancer / singer / parent whatever. Adam is always the diplomat, he will never pick a side. He either says both of us, or that he can't choose. Max is very fair-weather: whoever is the flavour of the moment (ie whoever has acquiesced to his demands) gets chosen as the best dancer / singer / parent etc. As for Kate; it is always me. I am always the bestest / most fabulous. Even though her father is SO super nice to her, Kate is always on my side. We say that as the only girls in the family, we have to stick together - we are a team. We bump heads a lot too, but I get her. I understand who the real Kate is, and I am very protective about her.
When the children were little, they used to say they were going to marry me one day. As the boys have gotten older, they have moved from marrying me, to marrying their future spouse but living with me, to marrying their future spouse but living close by. (Actually, Max has swiftly moved on. He is going to live in London to be near DanTDM but apparently I shouldn't be sad as he will visit me often). But not Kate. Kate has always said that she is going to marry me one day. Until the girls in her class laughed at her and told her that she can't marry her mother. Fine, she said, then she is never getting married, but she is going to live with me forever. I told her that is absolutely fine with me.
Our latest bumping-of-heads has been about a dog. Kate wants a dog that will live inside our house (THANKS GRANNY!!) I don't want a dog that lives inside our house. Forgetting about the plan to live together forever, I told her she can have an inside dog one day when she has her own house. She replied "Mom, I really want this to work, but this is affecting our relationship". (She really did say that!). So I said that when she was bigger and we lived together forever, we should design a house whereby she could have a dog that lived in her half, and I could have a pet free half. A few hours later, she came to me with a drawing of our future house on pieces of paper stuck together. Kate is super creative and has real talent in drawing, I so impressed by her house plans. She has designed a two bedroom house, one bedroom for each of us. The dogs (apparently there will be two) have their own play area. There's a pool and I even have an en-suite study with separate workstations. She has put details like a recessed wall with a garden feature between the rooms. She is such a sweet child. She is still very young for her age, Adam is far more mature than she is. My sweet little girl. I love her very much. I would be honoured to live in her beautiful house with her, together forever ❤.
PS We haven't actually discussed where Marko will live. I will have to gently enquire what the plans are for him when she wakes up tomorrow. Perhaps he can share the dogs' play room. I am sure we can fit another dog basket in there.
My lovely sister Melanie is studying to be a social worker. As part of her studies, she is volunteering at Bright Lights Place of Safety. And Melanie being Melanie, she has jumped in boots and all into the project and is determined to change the lives of the boys in the home for the better. It's not enough just to do her social work, she wants to give them love and support as well. And so she is asking for any donations of gently used sports clothes, soccer boots, boys clothes and shoes and anything else that the boys could use. She would also love to buy winter bedding for the boys. More info below.
For those who want to make a cash donation to the project, the GoFundMe link is: gofundme.com/23htk4s If you have gently used clothes you would like to donate please contact Melanie on email@example.com.
(Note: The Western Cape has the highest reported rate of Fetal Alcohol Syndrome in the world :(
ACVV Bright Lights is place of safety for boys located in Somerset West.
It is a place of safety for 20 boys who live there as they have been removed by the courts from their homes for various reasons like neglect, abuse and carer alcohol & drug dependency. The youngest is 8 and the oldest 17. They leave when they are 18.
Many of the children have learning disabilities due to Fetal Alcohol Syndrome, poor maternal care and malnutrition. A lack of early childhood education and stimulation further compounds the problem. Then due to the instability of home life, many had very erratic schooling so are unable to cope with mainstream school. They are now too old for the grade.
To give them a basic education with the aim of ensuring they are literate we have a home schooling program where the boys are divided into 2 groups and taught by volunteers. We have day kids who attend too and get breakfast and lunch along with the schooling
Our needs are clothing and shoes in smaller sizes. The boys are tiny due to FAS / malnutrition. Clothing in sizes 9-10, 11-12, 13-14 is needed, shoes sizes most popular are 1-4 but a few larger sizes too. Generic school clothes like grey pants, white shirts etc would also be great.
They are sports crazy so we would love any donations of soccer boots, karate clothes, skate boards and any other sporting attire / equipment.
For winter I want to redo each child’s bed: winter linen, extra blanket, matrasses cleaned. I would love for someone to paint inside. Just a big freshen up for the boys’ rooms.
A big redo of the bathrooms is also needed but that is a bigger project we will need to take on.
A really big project would be for the home to get a new van to transport the boys around.
I would love to have each boys birthday sponsored by someone so we can have a proper celebration.
As I have said before, Max is doing so super well developmentally. He has made major progress in the last year or so. After refusing to pick up a pencil and draw anything, lately he has been writing things and drawing pictures. Today he came to me with a picture of a donkey he had drawn (it was really good!!) and asked for crayons to colour it in. Max just ASKED to colour something in!!!!! Awesome awesome awesome.
PS I know the donkey looks like a scary dinosaur with those teeth, but he was drawing Donkey from Shrek. This look:
However, one of the last skills Max is mastering as he moves along on his development path is the social skills. He is sorely lacking in that. He has poor impulse control and poor social skills. His social filters are quite immature. He is not the type of child that most ’typical’ children will readily want to befriend, and I honestly can’t blame them. As I have said before, which five year old would want to be best friends with someone who doesn’t know where the line is, who ruins your game or bashes your tower over. I love him dearly, but I am not blind to his social inadequacies.
We were walking out from school today and Max says to me “hey mom, you see that boy over there?”. Yes I say. He says “that cute fat one, the one like a ball”. Yes, shhhh, I see him. Is he your friend (please let it be so!)? “Yes, I really like him.” Oh that’s nice! (*thinking - how can I befriend that child’s mother and arrange play dates so that my child eventually has a BFF*) "I like to annoy him.” Oh, um, how do you annoy him? “I call him fatty-pants and then I run away”. Max! You mustn’t do that! He smiles reassuring at me, “It’s ok, I run like the wind, he never catches me”. No, I mean you mustn’t call him fatty-pants, that might hurt his feelings. “But it’s so fun when he chases me”. Ok, but you need to ask him to chase you rather than calling him fatty–pants, because that will hurt his feelings. “Ok” he says. Oh good lord, no wonder he doesn’t have many (any!) friends. Sigh.
*Side note: Last week a five year old made me cry. I got to class with Max in the morning and a (popular) boy in his class says to me, in front of Max “I told my Dad about Max this morning”. Oh?, I said. “Yes, I told my Dad that Max is a very rude boy because he ruins our games”. I wanted to die. I mumbled to Max “Max, you mustn’t do that, your friends won’t like it”. And then I went into the bathroom at the school and cried my eyes out. I had (once again) lulled myself into thinking that Max was doing ok in this department and had made friends. But once again, like all the other schooling years, I was reminded quite sharply that things are not that easy when it comes to social interaction. I know it will be fine, that he will make friends and have better social skills, I can see the improvements all the time. It just punches me in the gut when I am reminded of the current reality. I hurt for him. I worry that he will be affected by the rejection, the exclusion. Although, having said that – he doesn’t seem too phased by it. Perhaps he should be more phased by it so that he can try harder! Anyway, it is fine, it will be fine and everything will be ok. It’s all good. And getting better every single day. Now we have just got to work on not calling people fatty-pants.
I have been asked to participate in the LG Back to School Campaign. You can read all about it on my Reviews Blog: http://www.tertia.org/reviews/2016/01/seeing-how-the-other-half-lives.html
Yesterday we dropped Happiness and Lwando off at the taxi rank after work and as she is getting out the car Max says to her "Happiness, I must just say, you have a very nice son". Hearing yourself in your six year's voice is very funny/weird. But Max is right, Happiness does have a very nice son.
Lwando has come to visit us for the past few days as his usual care giver (his granny) is away at the moment and Happiness has no one else to look after him. Finding someone who is willing and able to take care of Lwando while Happiness is at work is actually quite a big problem and one that we are not sure how to solve. The problem is that he needs specialize care. At the moment, only Happiness and her mother are able to feed him. Because of his cerebral palsy, he is unable to easily swallow. Which means he doesn't want to eat so you need to be both gentle and firm to get him to eat. You need patience and kindness. On the rare occasion someone else has taken care of Lwando during the day, Happiness comes home to find Lwando starving because the person couldn't / wouldn't get him to eat. Finding someone to take care of Lwando for next year or the year thereafter is a big problem. Happiness's mom is getting old, she wants to move to the Eastern Cape to retire. She hasn't been well this past year. Happiness says that in the area she lives there is a lot of alcohol abuse, so to find someone who is both willing and capable (and sober!) to look after her son is a huge problem. There aren't any special needs schools in her area. I am feeling quite desperate for her actually. To be poor, and uneducated, and unsupported (Lwando's father does not support Happiness at all, not emotionally, practically or financially) and the mother of a special needs child is such a huge challenge. It's a massive dose of perspective witnessing her struggle. You / we think we have problems.... :(
I have to say, I got a bit of a fright when I saw Lwando this time. He is a gorgeous, beautiful boy and so friendly and happy, but he is more disabled than I realized. As he gets older, his disabilities become more obvious. All four of his limbs are affected. He is a tiny, tiny little thing. Like a bird.
What a beautiful boy!
Having Happiness and Lwando come into my life has made me realize like never before the absolute privilege that money / resources gives you. And how the lack of it is so severely limiting. When my child is sick, I whatsapp my wonderful paediatrician and arrange an appointment for that morning. I bundle my child in my car, drive 5 minutes to his rooms, wait for 5 minutes in the waiting room, get expert advice, get whatever medicine I need and off I go home again. If I don't understand something, I can ask or I can google it. I can see specialists, therapists etc when it suits me. My privileged position means that I am able to access all these services because I can afford it. The difference between public and private healthcare in South Africa is so stark. Happiness has to see if she has money for the taxi to get to the government hospital, where she has to sit in the waiting room all day, shifting from one chair to another in the queue, missing a day of work. Or she has to go to the local clinic where if she is lucky she gets seen by midday, but sometimes is turned away. Luckily she is able to access free healthcare through the government hospital and clinic network, but it is an extremely arduous process. The staff are over-worked, over-stretched and on a limited budget. The facilities are less than ideal. The doctors in the government hospital network are very skilled, but they are so stretched. The nurses even more so. There isn't always the time and patience to explain things in a way that an anxious, unsure mom might understand. Happiness asked me if I thought he would get better one day, it was such a hard question. The truth is although he might get more competent, he will most likely never be able to live independently. Lwando has spastic and dystonic quadriplegia due to cerebral palsy. This was the result of the MRI he had done earlier in the year.
I do what I can of course. I phone the hospital or email the doctor to try to help Happiness understand the information she has been given. I give her time off work to go to the hospital or take him to physio. I pay her the best salary I can afford. But at the end of the day, she is his mother. She is the one that has to care for him for the rest of his life. She has limited skills, limited resources, limited access to care and absolutely no support. It's a huge deal. The future looms large and quite scary.
But focusing on today, the most important thing for the next few years is to find good day care facilities for Lwando so that Happiness can carry on working to support her family (she has another son who is 13). There must be a school or a day care or a stay-at-home person that can take care of him during the day. As a non-verbal disabled child he is so much more vulnerable to potential abuse or neglect, which is why I feel so strongly about him being cared for properly during the day. As you know, I started a fund raiser for Lwando so that we can support him by buying him a wheel chair when he is older, but I would like to extend that to get financial support to pay for schooling for him. If anyone has any ideas about who / where could take care of him during the day, I would love to hear. Remember that Happiness relies on public transport to get around so we need a solution close to Durbanville.
For those who want to help in other ways, Lwando's Go Fund Me page is still up: https://www.gofundme.com/ekkoro
Previous blog post: http://www.tertia.org/so_close/2014/09/happiness-and-lwando.html
Max will more than likely need to repeat Grade R next year. When the idea was first discussed a few months ago, I felt really sad. Sad for my boy who would have to stay behind while all his friends moved on, and a little bit sad for me too. But once I got over my sadness, I felt a sense of relief. I firmly believe that what Max needs is time, and repeating the year will give him more time. He has no problem intellectually, but he needs time to catch up to his peers. Despite great progress this year and massive improvement in many areas, he is not quite there yet. And even though I get brief stabbing ouchies in my heart when I see the everyone's excitement about their kids getting new school uniforms, hearing about the graduation evening that my son won't be attending, I know this is the best thing for Max.
(If any of the parents read my blog, please don't stop being excited about your son/daughter going to Grade 1, or feel you have to act differently around me/us. I am excited for you! I am just a tiny bit sad for us, we are going to miss you very much.)
Max is doing really well. In fact, some things he is ahead of the curve at. Maths, shapes, measurement for example, he is really good at. He is also good at the physical milestones. Speech is obviously behind, but we have made massive progress there, he is doing so well. Art.... not so much.
I had a good giggle when I saw these pictures hanging on the wall at school. I used to get heart sore when I saw Max's pictures compared to the other kids artwork because it made his differences so visual and obvious, but now I just smile. Art is just not his thing.
PS how AWESOME are some of these portraits! Can you tell which ones were drawn by girls?
I want to try and describe a feeling to you, let me try to describe it by using different scenarios.
Imagine that feeling you would get if you tried really hard at something, something that meant a lot to you, something that you really loved, lets say drawing or painting. One day the art teacher holds up your painting or drawing to the rest of the class and says "Class, take a look at this wonderful picture. Notice the lines and the colours and shapes. This is excellent, you should all strive to do work like this". Imagine that proud, burny, full, scary, elated, explosive feeling you have in your heart when you think to yourself "maybe I *am* really good at this"
Imagine the feeling when you have secretly liked a boy or a girl from afar for ages. They don't know you exist, but you think about them all the time. You like them so much that it almost hurts, but you wouldn't ever dream of hoping they would ever notice you. And then one day as you are waiting in line, the boy or girl turns around and looks at you, really looks at you, and smiles. Directly at you. Only for you. Imagine that wonderful, scary, full, elated, proud, excited feeling you have in your heart at that moment. The exciting/scary thought that maybe, just maybe, there is hope.
That feeling there - that feeling of being so excited/hopeful/joyful/elated that it is almost scary, that is the feeling I get when I see Max do things that might seem completely normal / insignificant to outsiders.
The other day Max told me a story that took about 10 minutes to tell. It was a typical child fantasy story that, truth be told, was pretty boring by the 6th or 7th minute, but my heart was racing behind my calm smile and nodding head because OMG! MY CHILD JUST SPOKE FOR 10 MINUTES!!! He told a clear, intelligible story for 10 minutes that even someone who didn't know him would be able to follow and understand perfectly. Even as recently as a year ago, I was worried he would ever be able to speak properly. I wanted to cry, I was so proud of him. The feeling in my heart when he does things like that is so huge, it feels like my heart is going to explode out of my body.
On Sunday, after almost 3 years of swimming lessons (and lots of special therapy to deal with his issues), and a point blank refusal to even contemplate the possibility that he might one day be able to swim he just suddenly 'got it' on Sunday. All by himself. O.M.G. You don't understand how excited/proud/elated I was.
Look at him go!
There are so many examples I could share. Glimpses of 'normal' that are almost too scary to believe. Normal, ordinary 6 year things that make me so so so hopeful that he is very quickly catching up to his peers to the point where he can comfortably find his groove.
He has worked so hard for this. All his 'village' have - I am so thankful to his teachers, the OT, the speech therapist, my family and friends and everyone else who 'gets' him. And especially to his brother and sister who have had to exercise a lot of patience and understanding.
Max is an awesome, quirky, funny, loving, handsome, charming little boy and it makes me so happy to see him grow and develop like this. All we want is for our children to be happy, and Max certainly is a happy chap. And happy children = happy mom.
PS I know people say "he will be fine" and of course he will be. He is and will be fine because I will do whatever it takes to make sure he is "fine", whatever "fine" is for him. But I want him to be more than "fine", I want him to be happy, I want him to be proud of himself, I want him to like himself and I want others to like him. I want him to have friends, I want him to feel part of a group, even if that group is just two people. Because every little boy needs to have friends who like him and want to be with him.
Life is hard, we know that. It is hard for everyone, no one is exempt from the knocks, bruises and challenges of life. But at the end of the day, as a parent what you want is for your child to hopefully navigate life with as few bumps, bruises and challenges as possible. Life is hard enough with having the deck stacked against you, no matter how good or bad that deck is.
I am feeling a little annoyed and a little ranty. I would like to start a savings plan for Happiness to help her save for a rainy day / her retirement. I went on to Google to look for the best savings plan for a Domestic Worker, hoping that there would be a product that was aimed at the needs of Domestic Workers.
I found this. Looked promising:
Which led me to this article on Women24:
"Domesticsure" by First For Women sounded like something that would be a great option for Happiness. I eagerly googled it and found these many links:
However each link I clicked on came up with a 404 error:
I tried several different ways to look for the First For Woman product, but each time I got a "page not found" error. Feeling quite annoyed, I googled some more and found another product that sounded like a good option, this time by Old Mutual:
But when I clicked on the link in the article, I got this page:
I am feeling completely irritated by this. I understand that these companies have an obligation towards their shareholders to make a profit, and quite obviously domestic workers are not a profitable target market for them, but this feels like spin and PR without any substance. If the product was discontinued then I think the links should go to a page that says "Sorry, we don't offer that product anymore, however can we interest in another product". Or something like that. To direct the link to a 404 feels like cheating. Old Mutual and First For Women, that isn't very nice of you at all.
Maybe I am just a bad Googler and all those pages do exist. In which case my bad, I'm sorry. Maybe you are better than I am at finding information on these links: http://www.firstforwomen.co.za/products-and-benefits/personal-insurance/Domesticsure/?vdn=16229
Does anyone have any tips or advice on an investment product aimed at Domestic Workers (perhaps some retirement benefits / some life insurance / funeral policy / basic health cover)?