Our story, our journey.....

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 p...

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 i...

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:

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 ...

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

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 p...

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!...