Our story, our journey.....

Hobbies - sanity saving stuff!

2020-09-14T21:01:00.000+02:00

I haven't written anything in a while. Mostly because I've been keeping myself busy, quite productively I must say.

I started a whatsapp group more than a year ago, where I sell items I find at thrift stores. I hit an emotional bump in the beginning of the year and stopped the group for a few months. After some self reflection, I started the group again, and it's been keeping me occupied. And thus away from sinking into depression again. Depression as a result of PTSD from special needs parenting. But I have posted about this before, and this post is about positivity and hope. So I won't be going into depressing subjects today.

My whatsapp group's name is Interestingfinds. And that's exactly what I sell on the group. Treasures I find in thriftstores and similar stores. I also have a bidorbuy account where I sell similar items.

But the whatsapp group has been really therapeutic. I get to interact with other people (electronically) and I have made quite a few friends this way. Interesting and diverse friends who all have something in common. They all like the items I find...

I have thought about why I love thrifting so much, and I have come up with a few reasons.

I love the hunt. It's like I get to go on a treasure hunt every time I go searching for stock.

I love researching the items I find. To imagine the time it comes from. I have found a number of VERY old items along the way.

Some of the most interesting are old coins. ZAR coins - from 1896 - I had a silver tickey, sixpence and 2 and a half shilling at one point.

Another very interesting (and lucrative) find was a box full of old GI Joe's (and accessories) - from the 1960's. These were original Vintage GI Joe's and we made about 500% profit on this lot. I say "we" because Alta and I share this passion for old stuff, and we started the group together. She is however working full time as a physiotherapist now and I am running the group and Bob on my own.

We have had to make a lot of sacrifices on this special needs journey, and we make them out of love.

One of the sacrifices is "nice" things. We do not have any pictures on the walls (we had photos in frames, but with every one Jacques broke, I didn't bother to replace it) and thus, now, we have bare walls.

There are no cupboards or side boards with little ornaments, those we had to give up a long time ago.

The piano bench is empty, all the sheet music is locked away in a cupboard.

Our living room has 3 couches, 1 piano and a specially built, bolted to the wall, wooden TV case with perspex-like glass to protect the TV. That is it. There is no decor, no portraits, nothing.

You do not get a sense of family when you enter our house, but that's okay. We have accepted this, and it doesn't reflect our home at all. Our home is the people inside the house. The people who have sacrificed so much for one person, and who will continue to sacrifice whatever we need to.

We have adapted the house in such a way that we can keep Jacques from the back part of the house.

You could say this part is our sanctum, Johan's office and Ruben's room is in this part. My "interestingfinds" are also kept in this part of the house.

Jacques is not allowed in this part of the house without supervision.

This may sound harsh, but it works for us. And the fact that we can leave him alone in the front part (at least for a little while), really helps a lot!

Now, to get back to the reasons I love thrifting, I get to hold and admire items for a while. Items I can not keep because of the reasons already mentioned.

Beautiful, rare and old items, with rich histories behind them.

The money I make from the items have helped, especially during lockdown. But the therapeutic effects have definitely made the biggest difference.

I am grateful to have found a hobby I really love, and been able to make some money from it as well.

Embarrassing or infuriating?? Both.

2020-06-30T16:26:00.000+02:00

This special needs journey has been entertaining. It has been scary. It has been educational. It has been down right depressing at times. It has been humerous.

All of these emotions have been present for a while, and we experience most of them daily.

It has also been embarrassing. But we got used to the dirty nappies at inoppertune times. We even got used to impolite stares and whispers. All of these moments have been embarrassing in a way, but we got over it and learned how to cope with them.

We have recently begun to deal with issues that were not present before. It is embarrassing, but it also reminds me of how uninformed people can be.

We attended my niece's birthday party and one of the moms told my sister that she was worried because my son would be attending. She was worried he would try something with one of the girls. Now, for those who don't know Jacques, that is just plain hilarious. It is funny because Jacques doesn't understand sexuality. And it is hilarious because he cannot even pee in a toilet yet, so what exactly would he do?

But it is a bit embarrassing, and a lot infuriating, because it is a preconceived idea (although completely unfounded) people have of people with intellectual disabilities.

I am however not mad at her as a person, I am mad at society. I am mad at false clichés people believe to be true. And I am saddened by this lie, because people lose out on the phenomenon that is Jacques.

Because that is what Jacques is: he is one in a million, in every sense of the phrase.

Medically, he is very complex. I challenge anyone to show me someone with exactly the same combination of medical complications as Jacques.

He is also the most devoted Christian I have ever seen. He spends most of his day watching church services and church music. He also asks us everyday, when will holy communion be served again. Show me one other 15 year old kid who has asked for holy communion in this lockdown period.

His faith in God has helped me through this lockdown like nothing else. Because if he spends most of his time loving and praising God, who am I to feel depressed?

So my advice to my sister would be, share our story, as far and wide as you can. And I want to thank her, because she is one of only a few people who actually research Jacques' conditions to educate herself and other people. Estie, I love you❤️

We are lucky to be part of a few great groups on social media, where I get to share our story, but more importantly, I get the indispensable support and understanding we need so much.

Trauma - and how I cope

2020-05-15T12:30:00.000+02:00

Trauma is a slippery bastard. It creeps up on you and takes your breath away at the weirdest times.

It sneaks into your thoughts when you're lying in bed trying to sleep. Crowding your thoughts with doubts and deep seated fears.

It rears its ugly head when someone unexpectedly moves close to you and you cringe without realizing it.

As most of our followers know, Jacques was hospitalized for 6 days with a staphylococcus bacteria which triggered reactive arthritis. And with the current lockdown rules (as a result of the covid pandemic) my husband was not allowed to visit at all. It was Jacques and myself, alone, 24/7 for 6 days.

It was challenging, but nothing I couldn't handle at the time. The adrenaline caused by the situation kept me functional and we coped.

The first few days were "easy" as Jacques was in alot of pain and sleeping most of the day and night.

As he started to feel better it got a bit more difficult. He had the strength to fight against his situation, and unfortunately his "safe space" is me. He fought with me everytime they poked him, everytime they had to take x-rays or do some procedure.

I have quite a few new bruises. And unfortunately those bruises aren't just physical. The trauma Jacques experienced becomes my trauma because I was effectively a human punching bag for a few days.

But, as I said, while in the situation I could cope - I didn't have a choice.

The real trouble starts when we get home. When everything returns to normal and Jacques feels safe again. Then I have to sort through feelings, fears, doubts and other things I cant put into words.

This, I have learned is PTSD - post traumatic stress disorder. And it wreaks avoc on the psyche. It tries to invade precious moments. It makes you feel vulnerable and weak. You start to doubt in yourself and your abilities.

I have at least acquired some coping mechanisms that I have found help.

I write - this blog has helped me tremendously. As I write this post I get to work through my scrambled thoughts and also acknowledge what I am feeling. I have found that this helps enormously. Acceptance is an invaluable resource. Acceptance of my thoughts and feelings and not feeling guilty for having them.

I spend time with Ruben. My youngest son has saved my sanity a few times, hopefully without him knowing it.

I cook up a storm. One of my favorite hobbies is cooking. This is a love I inherited from my mother and cherish with all my heart. The smells and memories are very therapeutic.

I research Jacques' conditions. I slowed down with this a while ago as it scared me, but knowledge is power. I try to keep up to date on treatments and new findings on his various health conditions. This way I feel like I can at least contribute to his therapies. I know his overall condition will worsen over time but I can try to slow down the progression.

The last coping mechanism I will share isn't all that productive and I monitor my use of it carefully. I binge watch tv shows. I have found that I can get lost in fictional characters problems and give my mind a rest.

It will take me a while to get back to the emotional space I was in before the hospitalization but the journey to healing starts with recognition and acceptance.

Day 10 of the South African lockdown for covid-19. A cloud with a silver lining.

2020-04-05T15:35:00.000+02:00

Our isolation journey so far...

With the outbreak of this pandemic on the world, I have to admit that it has not really affected me negatively. But I think I am the only one in our family that can say that with honesty.

Do not get me wrong, the Corona virus is horrible and what is happening around the world is terrifying.

It is especially terrifying for families like ours who have an intellectually disabled child who is also extremely medically fragile. As most know, Jacques has cvid (commom variable immune deficiency) as well as type 1 diabetes and ehlers danlos vascular type. He is thus extremely immune compromised and the corona virus will most likely kill him.

And that reality has been there for most of his life. The reality that the next pneumonia could be the end of his journey with us. And because that has been a reality in our life for so long, the adjustments we had to make has been minimal.

It is the two of us (Jacques and mommy) 24/7, with the exception of 2 days a week, about 6-8 hours a day. He also visits with grandma for about 2 hours a week. Thus a total of 18 hours a week maximum that the 2 of us are not together. And mostly because of Jacques' autism, we have been used to being isolated at home. We go out to a restaurant (Spur) with Jacques maybe once a month. We also visit church once a week.

We are fortunate enough to have daddy work from home, which has helped a lot. But Johan also frequently need to travel for work.
Since the enforced social distancing and lock down daddy has been home and not working. Unfortunately he has his own business and thus, no work, no pay. But those are worries we will deal with in faith and prayer.

With Johan home and free to help with Jacques, this has been a blessing in disguise.

I can spend time with Ruben, and help him with his home schooling in this isolation period. Because daddy is looking after Jacques.

We get to spend time together while he does his chores.

I get to sow tiny seeds of things that matter to me. For example, I love cooking. I inherited it from my mom, I even studied to become a chef. My mom could make delicious food, from sometimes limited resources.

I get to share this love, which I inherited from my mom, with my son. These are very precious moments I intend to use as often as this isolation time allows.

I also get to share some of the progress Jacques has made with Johan. I would usually not get the opportunity to brag about Jacques' "piano playing" progress.
The actual progress we have made is remarkable. He can now follow (with limited assistance) a row of different coloured shapes - basically reading the notes. He looks for the colored shape on the paper and then searches for the corresponding shape on the piano. This may sound very simple, but it is an amazing concept to grasp and we will explore it further.

Ruben and I get to play online games together. This may sound a bit unorthodox, but we play online poker together. Ruben knows it's just a game and no real money will ever be used. But it is still bonding time. I learn a lot about my son this way😜.

We get to watch movies together (though this has happened only once since the lockdown😳).

We get to braai together with ouma and oupa. We are lucky enough to live on the same plot as my parents in law and therefor at least get to socialize with them every once in a while.

It is day 10 of the South African lockdown for the corona virus and it has been like a cloud with a silver lining in my case.

Our sanitary supplies are out of stock, now what?!

2020-03-13T10:44:00.000+02:00

So amidst this Coronavirus madness, we cannot find DGerm or Bioscrub in any pharmacy😢. We have been using this for a long time before this pandemic made people go crazy and buy out supplies. Necessary supplies for families like ours.

Families with loved ones who are immune compromised. Like most of our followers know, Jacques has CVID (common variable immune deficiency). He is also still on nappies and we use Bioscrub, hand sanitizer, gloves and wet wipes to keep us and Jacques healthy.

I have read in a lot of posts that the corona virus is not life threatening to "normal, healthy" people. This virus could however be lethal to people like Jacques. People who don't have a working immune system.

We have decided to keep Jacques out of school for a while (luckily the holiday starts soon), we can't take any chances especially since he isn't getting Polygam infusions at this stage. The trauma (and risk of infection) is just to high.

If you're feeling panicked and need to buy some of the supplies mentioned, please keep families like ours in mind and do not buy out all the life saving supplies (life saving at least to families like ours).

To test, or not to test. That is the question...

2020-03-05T12:23:00.000+02:00

Sorry guys, for the month of March I'm going to post a lot about alzheimer's as this month marks 2 years since my mom passed away. My mom had a huge impact on my life and on how I choose to raise my kids. Please bare with me.

As I have mentioned many times before, my mom had early onset Alzheimers disease. Early onset refers to the disease's onset before 60 years of age. My mom was 57 years old when we started noticing signs. She was officially diagnosed at around 60 years of age. She passed away before her 65th birthday.

According to Mayoclinic:
A very small percentage of people who develop Alzheimer's disease have the early-onset type. Signs and symptoms of this type usually appear between ages 30 and 60 years. This type of Alzheimer's disease is very strongly linked to your genes.

What does this mean? And what does it mean for me personally?

Scientists have identified three genes in which mutations cause early-onset Alzheimer's disease. If you inherit one of these mutated genes from either parent, you will probably have Alzheimer's symptoms before age 65.

Oh boy. This has been one of my greatest struggles. Should I get tested? And if I have the gene, what then? It would be like a death sentence, because that is what Alzheimer's is. It is a death sentence.

It typically takes between 7 and 10 years before it kills you. And it doesn't kill you mercifully. It takes away everything that makes you, you.

It affects your whole family. I think the person suffering from AD is probably the one least affected emotionally, because you forget everything gradually. The family however never forgets. They never forget the years they have to watch their loved one disappear slowly until nothing is left of the person they love. They have to start dealing with the loss a long time before the person actually dies.

Now, I have a choice. I can get tested, and the results can come back positive for one of the genes. Then I get to know what awaits not only me, but my husband and my sons as well. And I get to worry, everyday, when will it happen? If I forget something, is it normal aging, or is it a symptom?

If I'm being completely honest, I have already started to worry, even without the genetic test. Did I forget something because of normal stress and aging factors, or could it be an early symptom?

I have however made some decisions. Decisions for now, they're not final and will be reevaluated at some point.

I have decided not to get tested. This may be me, burying my head in the sand, but it's my choice. I get to make this choice for now. I get to choose to live everyday fully. To enjoy my time with my family.

I get to watch my sons grow up now, I get to enjoy seeing their personalities develop. If I tested positive for the gene, I would worry about myself and my symptoms non-stop. I would probably miss out on a lot of awesome moments.

I choose to spend the time I have, living everyday, as if I could die tomorrow. I choose to do things today. I choose to go on family vacations, and to enjoy swimming and supertubing with my sons.

I choose to go fishing with my boys. This is something we never did as kids. We were three girls, so fishing was never an interest. I love to go fishing with the boys. To watch the anticipation and excitement when they have a bite on the line.

I get to go on mother and son dates with Ruben. This is an important tradition we have. It is time spent, just the two of us. Making memories.

Memories that will last a lifetime, and if needed, be a crutch for my family, if I should get the dreaded disease.

I choose to build memories with my husband. On our weekends away, alone. Just the two of us.

I have learned in the two years since my moms passing, that memories are VERY IMPORTANT. I have been able to start forgetting the last few years of her life because of the memories I have of her when I was young. I can remember her impact on my life. An impact that was made long before Alzheimer's disease entered our lives.

And I choose to build memories with my family. Memories that will be healing someday, if needed.

The heart will never forget...

2020-03-03T16:46:00.000+02:00

I did it! I got my first tattoo. And it wasn't nearly as bad as I thought it would be.
I'm really proud of myself. I have wanted to do this since before my mom passed away, and decided it had to be done before the 2 year anniversary of her passing.

I have to give special thanks to my sister in law - she went with me and encouraged me from the start.
So, dankie sussa! Lief jou sommer baie!

I was very nervous, but Adri was amazing and quickly put me at ease. I can definitely recommend her to anyone looking for a tattoo artist.

So, without further ado, here are pics and videos of our adventures this morning.

Estie also had a tattoo done in remembrance of her two doggy kids that passed away recently.

These are pics of her tattoo:

Almost 2 year anniversary

2020-03-02T12:24:00.001+02:00

The 11th of March is fast approaching. On 11 March 2018 our lives changed forever.

My mom passed after years of battling Alzheimers disease. And it was a battle, not only for her, but for everyone who loved her.
We battled against her memories fading. We battled, trying to accept what this most horrible disease did. We battled our feelings of helplessness as everything that made our mom, our mom, was taken away viciously and without mercy.

I still have her ash, we have not decided where we want to scatter her ashes. She never really mentioned what she wanted us to do with them, she only told us that she wanted to be cremated. My sisters and I will decide together how we will take that final step of letting go, but we aren't in a hurry. It may sound strange, but for now, it brings some peace knowing a part of her is still with us.

I have however decided to do something, for me, before the 2 year anniversary of her death. It's something I never imagined I would want to do. And now, I can't wait.
I will share this big THING tomorrow. Yes, I'm leaving you all with a bit of a cliffhanger, sorry😜.

So come back tomorrow for the surprise...

A typical day in the life of Jacques

2020-02-28T08:35:00.000+02:00

I made a video of what a typical, non-school day looks like for Jacques.
Enjoy!

Special needs families are made from strong stuff.

2020-02-24T11:04:00.001+02:00

This is gonna sound really strange, but sometimes I almost envy people in "normal abusive relationships". They have the luxury of hating their abuser. Of maybe finally getting out of the relationship. They get sympathy and maybe finally get to escape their circumstances.
Parents of certain special needs kids never have that luxury. Sure you can be pushed into placing him/her in a home, to make them the problem of the state, or to have them live with relatives for a while. But, you never escape the sense of responsibility. Or the pull of a parents love. That love that would move mountains for someone. That kind of love that may eventually become your undoing.
(Un)?fortunately, special needs parents are made of really strong stuff. They learn to focus on the small victories. On the happy times, the times your heart feels like it might burst out of your chest with love for that child. You focus on the effect that child has on everyone he comes in contact with. The immense pride you feel when people take time to notice how far he/she has come.

You focus on the impact that child has had on his/her siblings. The amazing young human beings that are being developed through circumstances you would not wish on your worst enemy.
And you pray, you pray for strength, you pray for patience, you pray for understanding and you pray for answers. Answers to questions you cannot ask anyone else. Questions you do not wish to reveal to anyone else.
And you wait, patiently, for the answers to your prayers. Because they will come, you know without a shadow of a doubt that they will come, because He has always answered your prayers, in His own time. When He knows you are ready for the answer, when you will be able to handle whatever He decides is for the best.
Special needs families are some of the strongest people you will ever meet, remember that next time you feel the urge to judge or to stare.

Weird things we say and do on this journey...

2020-02-12T08:44:00.000+02:00

My last few posts have been on serious topics. I think it's time for some lighter reading.

I herewith present:

Weird / crazy things we say or do almost daily on our special needs journey.

1. "Are you high?" - this is something most, if not all, type 1 diabetic parents must have said to their type 1 at some point. When Jacques' blood glucose is high he gets very thirsty, after his second glass we usually start to consider a high blood glucose. You can imagine the looks we have received when strangers overhear us talking about our 14 year old disabled son being high.

2. "Where are your pants, and your shirt, why are you naked?!" Boy oh boy, we ask these questions at least once a day. Jacques loves stripping, if his pants or shirt are slightly wet, he will strip, without any shame, where he is, in front of everybody. As you can imagine there has been quite a few embarrassing moments over the years.

3. "No, don't, stop!" To late, there goes the cat, flying through the air, again. Our cats definitely have more frequent flyer miles than we do.

4. "Say thank you." This is Ruben's favorite phrase to use on his brother. We call him the thank you police. If someone gives Jacques something and he doesn't immediately say thank you (or show in sign language at least), Ruben will remind him very quickly.

5. "Not so loud, Jacques." This is a very common phrase in our house. When Jacques has the mouse or remote control for the tv he doesn't have a happy medium with the volume. It is either very loud or there is no volume, there is no in between.

6. The next word we use A LOT in our house and needs some explaining because it is in Afrikaans and the english translation will sound very crass. Jacques only has a few words he can pronounce quite well. And "poepol" is one of them. Now, the translation is "asshole". And we use this word as a joke when we speak to him and about him with each other. When we are in other company and he uses "poepol" it quickly changes to "popcorn" as it sounds a lot alike when he says it.

7. "Where are the janitor keys?" The janitor keys refer to all the rooms in the house's keys, including the security gates to and in the kitchen. If we ever loose these keys we will be royally scr#wed. These are arguably the most important keys in the house, more important than the car keys, even more important than the front door keys. If we lose them we cannot sleep on our beds, or get in the bathroom, thus these keys are worth more than gold in our house. And someone usually asks this question at least once a day.

8. Jacques' way of apologizing when he has done something naughty is saying "skiesie" in afrikaans, which means sorry. He uses his index finger when he signs the word. We always tease that he uses the wrong finger, it should be the middle finger because he doesn't mean it. And we have adopted his way of apologizing to each other, but we do use the middle finger then😜.

Hypervigilance and PTSD in special needs parents

2020-02-10T12:08:00.000+02:00

When does helicopter parenting become something more in special needs parenting?

Photo by Alex Kremer from Pexels

Helicopter parenting is described as follows (according to Wikipedia) : A helicopter parent is a parent who pays extremely close attention to a child's or children's experiences and problems, particularly at educational institutions. Helicopter parents are so named because, like helicopters, they "hover overhead", overseeing every aspect of their child's life constantly.

Sound familiar, special needs parents? I think every single special needs family can be described as being like this at sometime or another. With the meltdowns so common in autism, we have to be aware of everything that could trigger one.

But what if this phenomenon becomes something more? What if you can't seem to relax even when there is nothing around to trigger a meltdown. What if you can't seem to switch of your fight or flight response, even when safely at home?

Luckily, we have access to A LOT of information online. You can research anything, including your own symptoms.

That is how I learned about hypervigilance. People who experience hypervigilance are unusually sensitive to their environment and people around them. Now, I am constantly with Jacques and therefor my subconscious is constantly anticipating his next moves. As a result, my senses are on high alert all the time, I feel like I have to be ready to spot and respond to any danger, to Jacques or to myself. And this feeling NEVER switches of. As you can imagine this is not just tiring, it is draining.

Now, hypervigilance is a symptom of PTSD. And PTSD stands for Post Traumatic Stress Disorder. To my surprise, I found out that it is quite common in parents of special needs kids. Exactly for the reasons mentioned above.

I know exactly what triggered my PTSD, it happened in July 2019. We were admitted to the hospital AGAIN and Jacques was understandably very aggressive because of all the trauma he has been through.
If you have read some of my previous posts you know how many times this poor kid has been hospitalized.
I ALWAYS sleep in when he is admitted to take care of his diabetes and to stand in the way of his aggression towards the staff.

These pics are of only a few admissions in the last 3 years or so.

His aggression peaked the one night and he attacked me, and I snapped. I could actually feel my heart break and I gave up. I didn't fight his attack, I just let him hit me and scratch me.

He went in to theater the next day and I admitted to myself that our lives would probably be alot less chaotic if he never came out. And for a split second, I didn't care if he came out, and in that admittance I felt like the worst mother on earth. My husband had to sleep in with us that night after theater as I could not cope alone. It was the first time ever that my husband had to step in like that, to take care of us both.

I really dislike this picture as I know where my head was at when I took it. But this is the closest pic I have to maybe convey my emotions at that time.

That incident in the hospital is what triggered my PTSD, and it took me a little more than 6 months to realize this.

If I'm honest, the last six months have been a blur. I shut down almost completely, I tried to stay functional for my family but I can now see I didn't really succeed.
I am so glad I started writing again, as through my writing, and the encouraging responses I received, I found the courage to really look at myself, to recognize I am in trouble. I have taken steps to start my own recovery but I also recognize that I need help, professional help.

My timing couldn't be worse however. We changed medical aids this year and we are in a 3 month waiting period now. I did speak to my husband and he has promised to help me through until April, when I can see a specialist mental health professional. This is however again not going to be easy, as I need to find someone who really understands PTSD in parents of special needs kids. I am however hopeful that my sons neurologist will have someone she can recommend. She has been a constant in our lives and we would not have come as far as we have without her help. I trust her completely.

In the meantime I will continue to write and to research treatment options for PTSD. And I will try to take better care of myself because I know my family needs me.

Music - a special part of our life

2020-02-07T08:39:00.000+02:00

Jacques and I have a special connection through music. It is hard to explain. He loves when I play songs for him on the piano. He will sit next to me and then I have to play. He will sit still the entire time I play (usually around 45 minutes), and this kid cannot sit still for more than 5 minutes usually. He switches couches while watching tv...

But something strange happens when I play, it is like we can communicate more effectively through the feelings the songs awake in us. I can feel when a song has made him sad, I feel it while playing. It has happened once or twice that I even stopped playing that song and went to another because I instinctively know if I finish he will be to emotional and will start to cry.

I know which songs he absolutely loves so I keep them for times a song has touched him deeply. I immediately go to one of his favorites and play that.

Another strange thing he does, he gives some of the songs names. When I play a specific song, he will say oupa Danie - he refers to his grandfather then. And he says that everytime I play that specific song. He has songs for both his aunts, his grandmother and grandfather.

Every single time I play them he mentions their names. I know the song for my sister Elna, was the song we performed on their wedding. I assume that is where he connects the song to my sister. She has been married for 8 years already😱. There is definitely nothing wrong with his memory.

And afterwards he is so calm. He has this euphoria surrounding him for quite a while.

You can probably imagine, I have been a weeping puddle at the piano a few times. This connection we have through our shared love for music is something I treasure more than words can describe.

I also try to instill the same love in Ruben, but that is a bit more difficult. Where Jacques' love for music is untainted by outside influences, Ruben's is not.

Ruben hears the bullies comments about boys singing in the choir. He knows what other boys think about boys playing the piano or any instrument.
I am also very proud of the way he deals with this aweful biased world we live in.

He basically ignores the comments, he has been singing in the senior choir of his primary school for 3 years now.
And something I am so eternally grateful for, he has started showing real interest in learning to play the piano.
I will nourish this love very carefully, and that is why I will teach him. I know my son and I know what will push him away from the piano. I want him to play for himself.

To experience the same emotions his brother and I share, and hopefully they can connect on the same level later on.

I guess it is true, music really is a universal language.

Our greatest fears came true for a friend of mine.

2020-02-06T11:44:00.000+02:00

The third angel I had the privilege of knowing has passed away. And my heart breaks for all of the parents of the kids taken away so young.

This is a pain I am not yet familiar with, but it is the pain I know that will hurt the most.

This is the pain many special needs family's fear more than any diagnosis or treatment. The pain of saying goodbye to the person who formed you more than anything or anyone else ever could.

And this special person formed the whole family dynamic. Everything revolved around their care.

Vacations were planned around their needs.

Their parents were absent for a lot of their siblings life.

I fear for the time, just after the loved one will be taken, what will the sibling/s feel? How will they react? How will we react? I know there will be sadness, but what other emotions will be lurking around?
Anger? Resentment? Maybe even a sense of relief? How will we deal with that?

I think it's important to start dealing with these emotions while our loved one is still alive. And that may be easier said than done.

As for the resentment and anger emotions, we try to do as much together as Jacques will allow.

We take holidays with Jacques. We go camping as a family. Jacques loves the outdoors, he loves swimming and he LOVES socializing.

Weird, right? He loves mingling and interacting with strangers. BUT, and this is very important, ON HIS OWN TERMS.

When he has greeted you, and maybe pulled your hair, he has had enough. He will say bye and go seek his next victim.
This is why we let him mingle on OUR TERMS. My husband and I understand each other so well, that without saying a word we will know when Jacques has had enough and it's time to move before a scene happens, and it will happen. But that understanding didn't come all at once, it comes from years of caring for our son, together. Going on camping trips, together. Ruben is amazing at these camping trips. On our last holiday, Johan and I had reached our limit. We were on the verge of packing up and calling our short camping trip off. When Ruben came and took Jacques, he helped him into his wheelchair and he took him for a stroll around the camp site. It gave us the opportunity to breath and to recollect ourselves.

We stayed until the end of our planned trip and had a great time. All thanks to our 10 year old acting a lot wiser than his years.

We also take trips without Jacques.

Johan and I try to take at least two trips a year without the kids. Just the two of us for a weekend. We catch up. We reconnect. I cry, he listens and then we let off some steam. That is all I will say about that. 😜

We have had one long weekend away with just Ruben and I really want to do it again. It was amazing. We got to see a side of our child that we rarely have the opportunity to enjoy. He could let loose and be a kid. I am happy to say that his inner Ruben is becoming more evident even to other people, and I am very proud of him for that.

What we also do, and my fb friends can vouch for this😜, we do a mother and son afternoon/lunch.
He picks the restaurant and we spend a meal together, talking and reconnecting. And sometimes daddy gate crashes, but we don't mind...

We catch up on each others lives. This way I can maintain a strong bond with him, while knowing that he understands I have to give Jacques more attention.
And what I have come to realize about this incredible little human, is that he is a funny, bright, amazingly intuitive, sarcasticly brilliant little man, and I thank God for him, every single day of my life. And the little man part is correct. I think some people may get the wrong impression of him when they first meet him. And I ask you, if you do know my son, look deeper. You will be amazed when you see him through my eyes.

I really pray that these things we do now will be enough when our time comes to face the pain we fear the most.
I am still a bit worried about the feeling relieved part of the emotions we will have to face.

But I pray everyday for the Lord to guide us further on our journey. And I believe if there is more we can do now to ease the pain later, He will reveal it to us in time.

What makes a special needs family?

2020-02-05T18:16:00.001+02:00

People can be cruel
Not think before they speak
But you just play the fool
Not bothered by what they seek

People can be curious
Or give you funny stares
Then you turn real serious
They're lucky all they get are glares

Cause mom's always there
The peacekeeper in her cape
Trying to keep things fair
With slaps and kicks we barely escape

Dads the back up, never far away
He's our own Clark Kent
We know he'll always stay
Lucky for us he's not just for rent

Lil bro brings up the rear
And he's wound tight
But it's not from fear
All he really wants to do is fight

Fight the rude stares and judgement
This little warrior protects his own
Mom and dad stand in agreement
Proud of how much he has grown

We didn't choose this life
And definitely wouldn't, had we a choice
But despite the struggles and strife
We still have reason to rejoice

This journey has not been dull
We have learned a lot
Met many interesting people
And oh boy, have we fought

Fought for acceptance
And sometimes we'd succeed
But sometimes had to distance
Otherwise we'd just bleed

So if you share our journey
Please comment and say hi
You can help us share our plea
And help us, the odds defy

Ehlers Danlos syndrome, Type 1 diabetes, Right ventricular hypertrophy, Autism and Common variable immune deficiency. Oh boy, that's a mouthful!

2020-02-04T13:00:00.000+02:00

I thought I'd do a refresher post to keep all our followers up to date on the obstacles that's been placed on our journey so far.

I first have to refer to my mother's diagnosis and her lingering influence on our journey. She was diagnosed with early onset Alzheimers disease when she was 57 years old. She died 7 years later on 11 March 2018. I have mentioned her in a lot of my posts and that is the reason I begin this list of Jacques' diagnoses with my mom's last.

Jacques was born with obvious genetic signs, the geneticist could however not give a definite diagnosis.

We received his first confirmed diagnosis when he was 8 months old. It was type 1 diabetes. I think this was the most difficult one to accept. It was the first chronic condition that they could tell us would be permanent and it would be a life long sentence.

I now realize that it was definitely not the worst diagnosis of the extensive list we have. The type 1 diabetes can thankfully be treated and people can live a relatively normal life.

The second condition that was diagnosed was Ehlers Danlos Vascular Type. This diagnosis came from my own research. It happened after an emergency laparotomy incision wouldn't close. The incision herniated four times before it was fixed. We finally convinced the very popular Paediatric Professor of Surgery that what he was doing wasn't working. He then (after the incisional site started bleeding so profusely we had to see a haematologist) decided to consult another surgeon (not paediatric) and this surgeon then fixed the hernia with surgical mesh. It has thankfully held until now. He has a small hernia above his naval now but it does not cause any problems.

I had also noticed strange stretchmarks on his hands and that combined with the atrophic scarring was enough to send me on the trail of a connective tissue disease. I googled these two symptoms combined with his left clubfoot (at birth) and found Ehlers Danlos Vascular type. I was pretty sure the rheumatologist would diagnose him with either vEDS or with Loeys-Dietz syndrome. The rheumatologist didnt know enough about Loeys-Dietz and said that Jacques' physical symptoms was enough to convince her that he had vEDS.

The third diagnosis goes hand in hand with the vEDS - he has developed Right ventricular hypertrophy. This is partly due to the vEDS and partly to severe sleep apnea. We did try a bipap machine but Jacques couldn't tolerate it. We also tried oxygen, but again without success so far. Jacques was born with a hole in his heart - an atrial septal defect. It caused severe pulmonary hypertension when he was a baby. It got better after a while (as the ASD closed) but after the connective tissue diagnosis we knew it would probably be back, and it was. He now suffers from moderate pulmonary hypertension. The treatment of all these conditions lie in oxygen therapy, but he cannot tolerate it. It is therefore a work in progress and this serves nicely as introduction to the fourth diagnosis.

The fourth diagnosis was autism. This was a weird diagnosis as by this time the neurologist and I had become such good friends that she had assumed I either already knew or I didn't care about a label. I asked her if she thought Jacques could be autistic and she replied that yes, he definitely had autism but she added that she didn't think I needed or wanted the label. I think this is definitely the diagnosis we struggle the most with. But I know that most of his aggressive behavior is born out of the trauma of years of "medical abuse". Abuse I am mostly accountable for. We tried so desperately to keep Jacques mobile and healthy that we missed what the trauma was doing to him.

He had 3 surgeries on his left club foot when he was a baby. He also had further foot and leg surgeries. Both feet were operated on in 2013 and then again in 2018 (this time they operated on the knees as well). These were in an effort to keep him mobile for as long as possible.

He had the 5 hernia operations as mentioned already. The initial laparotomy was an emergency surgery - he had an obstruction which the surgeon had to remove. After the laparotomy, the incision site herniated until it was fixed with the mesh.
He had a lot of trips to theater for grommets. We really struggled with his ears when he was younger.
He broke his left leg twice with very little weight bearing - the first time he had a spiral break, as he broke it while turning around quickly. The second time he fell over a small toy and it broke again.

We also had a scare after his tonsils were removed, he was around 5 years old. He started to throw up blood 10 days after the surgery. They had to burn the tonsil incision site closed again.
Years after this incident it finally made a bit of sense, the connective tissue disease explained a lot.

The diagnosis that finally sent us into panic mode and activated my fight or flight instincts was the common variable immune deficiency diagnosis we received. Again, this was not supposed to be a really "bad" diagnosis as there is treatment available. Very invasive, painful treatment called IvIg. It involves an infusion of immunoglobulin every 4 weeks.

And we tried the treatment for 18 months. It took 18 months to make both Jacques and myself finally snap.

I attribute our "resilience" upto that point to my family's unwavering support. We have the most amazing family who really support us in everything.

But after the many years of supporting Jacques through his "medical abuse", I decided that enough was enough. I had been selfish in my need to keep him with us, because it broke him mentally.
My husband and I made the decision to stop all treatments and planned surgeries. We agreed to create a calm environment and to avoid any and all medical facilities as far as possible.

This decision had some nasty repurcussions for me. I had some real trouble accepting the fact that I had essentially given up.

Now, here, I can finally refer back to my mom. Like I mentioned she had early onset Alzheimers and the last few years of her life was really rough on all of us.
This disease takes and takes and takes until there is nothing left to give. It is the most vicious and undermining disease I have ever come across, and I think that should say a lot in the context of this post.

But what this most horrid disease could never take away is the remnants of her teachings. The memories in which she passed along her wisdom and which I can now use as my guiding light. And I know without a doubt that she is proud of my decision to make Jacques' life as carefree as I possibly can, for as long as I possibly can.
Therefor the main diagnoses that we have will only be the five mentioned above. I am not looking for more, and I am sure I could find more if I continued searching. We will manage the conditions to the best of our ability, without invasive treatments. Thankfully, the type 1 diabetes is relatively under control, and that is the one diagnosis we need to keep an eye on the most. As long as we can keep his blood sugar within an acceptable range, we will be able to keep him away from invasive medical interventions. The rest of the conditions will take their toll, and, for me, it is a daily work in progress to accept that reality.

Footprints of a giant.

2020-02-03T14:37:00.000+02:00

Isn't life strange?

When I was a child I had a very close relationship with my father. He was my hero, I looked up to him and I have him to thank for my love for music. His passion for classical (and church) music was my inspiration and the reason I learned to play the piano.

My mother was the reason I continued with the piano lessons. Her encouragement when I wanted to give up is what pushed me towards becoming a moderately talented pianist.
I have come to realize, in the almost two years since her death, that my mother was my real inspiration in life. And thankfully she still is. When I am sad and discouraged, it is her voice I hear. I can hear it clearly in my mind, encouraging me not to give up, and then I feel her presence so very clearly next to me.
And with her ever present nearness I have nothing to fear or be sad about.

These last few years have been an eye opening experience.
Ever since my mom's passing I have been struggling with my spiritual life. I have discovered deep seated resentments and hurts I honestly never knew existed.

I am also very glad I had the mother I had. I can imitate her courage, her determination, her love and her unwavering support to the people she loved. March 11th will be the two year anniversary of her death, and I can honestly say that it is getting easier.

Easier to recognize her voice when my thoughts get too dark. Easier to recognize her courage coming through in the tough situations. Easier to love the people I am close to despite their faults. Easier to practice the same devotion she had to the people she loved.

And I know I have God to thank for this, because He gave her to me. I now know her purpose in life was to prepare us for the journey we find ourselves on. God really does work in mysterious ways!

I have a new favorite country song, it's titled "Footprints of a Giant" by Dean Brody. I definitely have footprints of a giant stretching out in front of me, and I thank the Lord for them everyday.

Jacques' confirmation service - done and dusted...

2020-02-02T13:52:00.000+02:00

What an emotional day this was!
My mommy heart felt sooo many overwhelming emotions, but the greatest emotion was definitely pride.
I am so proud of Jacques and the enormous impact he has had on so many people's lives. He brought together our family for this great day in his life and I am very honored they got
to share it with him.

This kid has definitely been the greatest teacher in my life.
I've been having a difficult time in my spiritual life. This special needs life and journey we are on can become a bit much. I have been worried about the future, about Jacques and our futures.

Sometimes it looks kind of dark - when I cannot control him. I fear the aggression that sometimes overcome him because he is becoming stronger everyday.

Jacques is still growing, he is almost 15 years old and he has not reached his final adult height. He already towers over me by almost a full head's length.
I feel intimidated by his size when I stand next to him. Most of the time, I only feel this way about his size and not him personally. But unfortunately, the bigger he gets the more intimidating those few times get when it's not just about his size.

And then I realize that the intimidation I feel for my own son, even though it doesn't happen a lot, is becoming something else, something more.
It is morphing into something close to terror. But, and I have to emphasize this, the terror only surfaces once in a while.
The slaps and the kicks and the things that get thrown around are normal occurrences that we actually turn into games most of the time. That is how well adapted we have become at this strange life journey we find ourselves in.

No, the terror surfaces when I don't see Jacques in the eyes looking at me during a meltdown. I see a stranger, and I can see that the stranger also doesn't recognize me. That's when I get frightened. I'm not scared of Jacques, I'm scared of what the stranger may do until he recognizes he is safe and among people who care about him.

I believe that the stranger was born out of trauma. Trauma born from years of pain and suffering in hospitals while we tried to give him a better chance at survival. Therefor the stranger that sometimes emerge is partly our own doing.

This morning in his confirmation service I was reminded that Jacques' soul is a lot more mature than the rest of him. Although his "tantrums" can be terrifying - mentally he is at a 3 year old level, and 3 year olds can throw some mean tantrums, not to mention a 3 year old in a 15 year old's body.

The officiant mentioned to the confirmants that although they may be mature according to the church, they still have a lot to learn about God's work. I was hit with the realization that Jacques' soul is more mature than mine in most ways.

He is not worried about people's reactions to his excited behavior when he visits God's house.
I will work on my own insecurities and I will help spread awareness and promote tolerance for people who are different.

Jacques' happy place is the church, but it's a lot more than the building responsible for his joy. His soul longs to be in God's house. When he watches tv at home, it is either a service that was streamed on YouTube or it is a music concert by one of the cape choirs.

His hero is our congregation leader, he loves him and he always greets him like he's a part of the family. Because to Jacques he is.

That's why I know his soul was confirmed this morning, his fragile body could not stop that from happening.

Thank you God for this amazing privilege to raise Jacques, and thank You for his faith that inspires me to be a better person.

The isolation of special needs parenting...

2020-02-01T11:50:00.000+02:00

I wanted to title this post, the loneliness of special needs parenting, but halfway through I had to change the title. You will find out why as you read, so hold on to your horses and read at your own peril.

I looked up the word lonely, and according to the dictionary the definition of lonely is: "sad because one has no friends or company".
I guess, according to the meaning of the word, I can't call my journey of special needs parenting lonely.
The second part of the definition is mostly correct, most of the time I have no friends or company, I only have Jacques' presence, always there. But I cant say I'm sad. Most days I have a lot of happy moments, with Jacques.
A synonym for lonely is isolated, I guess that is a better way to describe the special needs journey.
The meaning of isolated is: "having minimal contact or little in common with others." Unfortunately, our journey has forced us to have very little in common with most people.

And it is the journeys fault. If autism was not a part of our journey, if type 1 diabetes wasn't a part of our journey, I am a hundred percent certain our journey would look a lot different.
We would be able to go out to eat at whichever restaurant we feel like, not Jacques' favorite EVERY SINGLE TIME. And we could do that whenever we feel like it. We could quickly stop at the shops and go into all the stores we would like to. But if we do those things on our special needs journey we get hit windows, we get a hooter blown at every stop or traffic light. In short, it is overall a traumatizing experience.

Ruben would be able to have friends over who wouldn't leave our house with PTSD after a visit.
That is why this special needs parenting thing is such an isolating experience.

You lose most of the people you thought would be in your life forever. And please believe me, I am not bitter about this. I really understand the reality of our life, I know Jacques can be VERY intimidating. And if I am completely honest, I have to admit that I have considered drastic measures. Measures I do not wish to discuss at this stage because it hurts to even consider. And no, it's not as bad as it sounds. Let's just say that I have had fantasies of placing Jacques in an institute.

But, and this a BIG BUT, you gain a village that helps you through the isolation.
When I feel like my last marble is about to roll into the ether, my mother in law will come to fetch Jacques for a visit. Without me having to ask, she just senses somehow I could use the break. She is part of my village.

I am very blessed to have a sister and brother in law that travels 260km to come through for a special event in my sons life. They are a part of my village.

I have another sister who is always available to babysit for a night or a weekend so that hubby and I can escape from the journey for a little while. She is part of my village.

These woman are my rock, they keep me sane on this very insane special needs journey.
Our village include men that are always by our side, no matter what, we can always count on them.

And I thank God everyday for blessing my little family with these amazing people who carry us without even realizing it most of the time.
My sincere prayer is that my fellow special needs mommies and their families have the same type of village to help them.
And if you don't, please reach out, there are a lot of other people in similar situations. I am blessed to have other mommies of warriors that I share a lot of my struggles with. And sometimes I share things with them that I wouldn't even share with the people in my village.

7 honest tips for parents hearing a diagnosis for the first time

2020-01-31T08:22:00.003+02:00

I was thinking back to the first time we ever heard a diagnosis, and I was trying to relive the feelings and emotions I had at that time. I have come up with seven honest tips. I don't want to sugarcoat anything therefor some of the tips may even sound a bit harsh, it was not meant that way.

1. Breathe - take a deep breath and let it out. Take a couple more. It's going to be okay. Sounds cliché, I know, just do it. It may not feel that way now, but things will get better. You will get into a new rhythm and things will start to make a new kind of sense.

2. Talk to your other half - this is very important and gets neglected a lot of times. Tell your spouse how you feel. If you're angry, say so. If you're scared, admit it. This is a huge hurdle that has been placed on your path. Your journey is about to take a drastic turn, you need to be on the same page. If you are not on the same page, work together to get on the same page, otherwise things will only get worse.

3. Ignore unsolicited advice - oh boy, the advice well meaning people will try to give you will be overwhelming. My advice - smile and nod. Take the pieces of advice that you know will help you but ignore the rest. You will find your own answers in time.

4. Research - this is a tricky one to advise correctly. Do your own research and make notes as you search for answers. Take these notes with when you speak to doctors and discuss it with them. The doctors involved in my sons journey are all very open minded people who listen to the parents of their patients. Make sure your childs medical team are on board and committed to your child's health. If you feel they are not a good fit, look for recommendations for medical professionals from people in similar situations. This leads me to the next point.

5. Build your tribe/village - you will need support on this new journey. Talk to your family and extended family and ask if they will be willing to support you on your new path. You will likely find a lot of moral support from your close family, you will however need physical support as well. Ask if they will be willing to look after your child for short periods of time. You need to take a break from your new journey every once in a while.

There are many other people on the same or very similar path as you are on now. Search the internet for blogs and forums about your childs newly diagnosed disease. You will find a lot of support and comfort from other parents going through similar circumstances.

On this topic, here is a very useful blog post which lists practical tips on advocating for your special needs child.
https://wraemeredithblogs.wordpress.com/2020/01/16/ten-tips-for-becoming-an-advocate-for-your-child-with-special-needs/
Wrae's blog is about mental health and parenting - as her tag line states - a bit of an interesting mess. Go read her blog now!

6. Don't forget about your other kids - this one is probably the most difficult piece of advice to follow, but it is also the most important. Your other kids are terrified at this stage. They probably don't understand the new terminology and they are overwhelmed with uncertainty. Talk to them. Spend time with just them. Make sure they know their family foundation is still rock solid. I often feel really sad for my youngest son. He has never known a "normal" life. He is the youngest, therefor Jacques has always been in his life. I had 22 years of a "normal" life before Jacques was born. It's a scary thought actually, to realize Ruben has never known life without autism or diabetes in it. But I have to add, Ruben adores his big brother and I don't think his thoughts have ever ventured in the same direction mine has.

7. My final piece of advice - pray. This is a very personal thing. This is between you and whoever/whatever you believe in. Personally, I believe in God and in Jesus Christ. But pray. Talk to your maker. Fight with him. Plead with him. And always remember to listen for the answers. And they will come, if you keep on praying, pleading, fighting, begging, you will get the answers. They may not be the answers you were hoping for, but they will come. So make sure you recognize them.

Writing - my childhood fantasy may come true...

2020-01-30T07:07:00.000+02:00

Writing - my childhood fantasy

I have always had this silly dream of writing a novel. It started in my childhood. I have started a few times but have failed every time. I think the failures happened because I didn't have the right inspiration.
I have however realized that I have the perfect inspiration for my long standing dream in my own circumstances.

I would like to share my novel writing experience with my blog followers and I will post updates, as the novel progress, on the blog.

The story may not make sense as I post updates on certain scenes etc. I ask you to please bare with me. I will share the entire novel with my readers when I am finished writing it and I believe it will make sense when completed.

The title of the novel has changed once already and it could possibly change again. It was first simply titled - Brothers - as this is the main focus of the story. The bond between two brothers. But it is about much more than that.

The current working title is: Sometimes it's a curse. But like I said it is likely to change again.

I have classified it as young adult fiction because I would love for Ruben to read it and it is therefor mostly aimed at the siblings of kids with special needs.

So for those brave enough to enter the special needs journey with us, keep an eye out for my first attempted novel.

February challenge - post something everyday

2020-01-29T07:06:00.002+02:00

Hi all.

I am issuing myself the challenge of posting something on the blog everyday of February, starting today (the last few days of January included).
This coming weekend brings with it a big event in Jacques' life. It is his confirmation service on Sunday.
Auntie Elna and oom Ruan are

coming through especially for his big day and we can't wait.

Ouma Mina bought his outfit, thank you again ouma and oupa. Auntie Elna will paint a tie on his shirt, it's the closest he will ever come to wearing a tie😜.

The doctors didn't give this kid a year to live, he and God had other plans however. And that is why I want to celebrate this big day in his life although we will always be responsible for his soul salvation, I realize he will not be able to say the words of his confirmation vow. But I also believe that his soul is very ready for this vow. It is only his body holding him back and that's why myself and daddy will always take him to church as much as his condition and our sanity allows.

So congratulations my son, you have reached this important age despite all the odds being stacked against you.

We love you forever and ever.
Mommy, daddy and Ruben

The question I hate most. What do you do for a living???

2020-01-05T18:52:00.001+02:00

"What do you do for a living?" Innocent enough question. But this question brings up so many mixed feelings. The short answer: I'm a stay at home mom. But my staying home looks a bit different from other stay at home moms.
I'm a stay at home mom of a child with complex medical needs, a special needs child.

I always struggle to answer this simple enough question. One part of me wants to answer it with just the stay at home mom part. I don't want to go into details, I don't want to give the reason for being a stay at home mom. And this has nothing to do with feeling ashamed, but everything to do with the reactions that will surely follow, especially if I have to go into details of Jacques' very lengthy medical background. The reactions are quite predictable by this time (almost 15 years since his birth).

First the reactions are mostly of amazement and some times a bit of anger. Anger for the doctor not picking up on anything before birth.

The amazement morfs into horror as I explain the many theater visits, the many hospitalizations and the to many to count times he's been sick.

The horror becomes sympathy. Sympathy for Jacques, for going through all of this, sympathy for us, his family, who goes through everything with him.

And then finally, the sadness turns into the reason I hate to answer this question (and mention Jacques) - acceptance.

I see the acceptance I still struggle with.

Accepting that Jacques will probably not live to see his 30's. Accepting our reasons for not visiting regularly. Accepting our reasons for keeping Jacques away from certain activities. They realize and accept a fate I have not yet fully accepted, but I am close.

All of the above being said, I still usually answer the question with: "I am a stay at home mom of a child with special needs."
And I answer the question like this because without the reason, I feel ashamed.

I feel ashamed to answer with only "I am a stay at home mom". I know the judging looks I will get. The "Oh no, you're completely dependent on your husband" replies I will get. The off-hand comments of "I wouldn't know what to do with myself with all that free time". And the reply I detest most, but usually get: "I could never ask my husband/boyfriend for money."

So to avoid the above mentioned replies and comments I go into our "sob story". I mention Jacques' journey so far, I sometimes even add a bit of maths. I explain to them that a place/home that would be capable of caring for Jacques would cost about R25000 a month. So I would have to get a job that pay at least R25000 a month just to get Jacques into a place that would be able to care for him almost as well as we do.

Why can't we as women be more supportive of each other? If you are happy with what you are doing in life, I am happy with you. ❤️

Special needs siblings - the real superheroes

2019-11-22T08:24:00.000+02:00

Sometimes it's a bit hard to post, especially when you don't have something positive to post about. It's been a rough couple of weeks. I've decided to try to post something positive so here goes...

Special needs siblings - the real superheroes:

Here is a list of the most amazing qualities of a sibling of a child with special needs:

1. They just "get" their sibling - in a way no-one else does. They pick up on their siblings moods and know exactly how to handle it.
If their sibling is sad, they know how to cheer him up. If he is angry, they know how to calm him down, or how to dodge the hits and kicks.

2. They have a wicked sense of humor. Any sibling has to have a sense of humor to survive living with a special needs brother/sister. They see the comedy in situations that may not seem funny to any "normal" human being.
When your autistic child claps his hands very loudly in the restaurant and his brother joins in to spite the people giving his sibling dirty looks, you know your kid has a somewhat "off" sense of humor, just like you. And you're immensely proud of that.

3. Siblings of special needs kids have so much empathy, not just for their siblings, but for any individual that may not be "normal" in the conventional way. In one of Ruben's softball games, he was about to pitch to a boy, when said boy's insulin pump went off. Ruben knew exactly what it was and when he heard the boys bloodsugar was low he helped the boy to bring his bloodglucose back up. And even felt bad for striking him out (after the boys bloodglucose came back in normal range).

4. These amazing siblings also have fears that no child should have. Fears for their siblings future. Fear of their brother/sister dying. Fear of their parents dying and having no-one to care for their sibling.

5. But then they also have such selflessness and sense of responsibility that they offer to be their siblings caregiver when they are both adults.

These are just a few examples of the ways special needs siblings are superheroes.
Jacques truly has the best little big brother anyone could have.

Update on ketogenic diet...

2019-11-07T13:54:00.000+02:00

The keto diet is going well. I have lost about 4kg already, although this is not my aim with the diet, it's still an added bonus. I am in light ketosis at this stage (my blood ketone level is 0.9 mmol). It took a while to get used to the carb restrictions but I am quite adapted now and I can honestly say I dont miss the carbs nearly as much as I thought I would.
Also, because of the high fat intake I do not get hungry, also bonus. I'm not sure if it's all in the mind, but my thoughts feel more coordinated and clear. Hopefully this is an indication that my brain is starting to use ketones for energy.
All in all I feel good and very hopeful for results towards fighting early onset alzheimers disease.