Our story, our journey.....

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 b...

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...

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 h...

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...

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. A...

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 wor...

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: S...