Always there

Kades illness and recovery changed everything forever. It will be 7 years this October that everything started to spin out of control. Watch the video of Kades on set and progression of disease https://thisisit.blog/2017/10/15/no-more-boxes/ I cannot speak for him, that is his own story that he may or may not tell one day. I have …

I Love her

Lock down hit just at the beginning of Kades last year of high school. Education being important to him, I never will forget the words, "mum I don't want to be forgotten about", they still rang loudly in my mind. It was happening all over again, louder than before, they played on. For the last …

Quite something

I am happy. For the first time in the last five years I can say I am the happiest I have ever been. I still have days when I feel like I cannot keep fighting, but I will not ever give up and they are becoming less and less. Kade was awarded PIP for the …

By his side

Lockdown for us was life. I never realised until Covid came along. Chatting to Kade, when it all began, I asked how he felt. "Well it's no different to how things have been for me"...point made. As time went on and I watched every one lose it. I reflected upon how I had felt for …

Always Right

It is exhausting. Constant fighting. Arguing with strangers for pennies. Begging for help, I am not ashamed to say I have begged. I have asked the same questions a thousand times and still received no answers. I am more quiet than normal, people notice. I just need space to gather my strength to carry on. …

This Way

While we wait. Once again I consider what the future holds. Assuming you have watched the video of my sons condition, you will understand what I say next. (See his video here https://thisisit.blog/2017/10/15/no-more-boxes/) What happened to him is something you cannot describe with words. To see it is to believe it. Even then, I have …

The Fear

In our currant situation due to this COVID-19 out break many thoughts have passed through my mind. Sometimes I sit for hours just pondering what to think of it all (yes I am weird like that) After listening to many of my fellow PANS parents, likening the worlds currant situation to PANS itself, I whole …

When lightning strikes twice

When you have a child diagnosed with a rare disease nothing prepares you. Growing up for me, life was ordinary, the only significant ailment I remember, was my brother breaking his arm when he was about 12 or 13. The second of four siblings, life was good. We had a nice home, we were happy …

Each and every single one of them.

Sometimes when I look back I wonder how we got here. The last four years have been intense to say the least. It is difficult enough having a child with a medically complex condition but harder when no one has the confidence to help. It is not like in the movies, every one rallying around …

Your absolute best

Recovery is an entirely different rabbit hole in my experience compared to the illness of PANS itself. Unique to each child it brings with it new challenges. I have followed many a families stories to date. Some recovering, some relapsing, some still in the throws, some just starting out. Each one grips my heart the …