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Showing posts from 2020

Embarrassing or infuriating?? Both.

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 becau…

Trauma - and how I cope

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 …

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

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, ab…

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

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…

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

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 o…

The heart will never forget...

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: