“Your positivity makes me feel more low.”
Well, this really was a first for me. My being positive making someone else feel less positive? Wow. I was a little lost for words for once.
Someone who has always been in my life and loved me as I have loved them, told me that my positivity makes them feel more low. I won’t go in to the full conversation, to save the upset of the person should they read this blog one day. However in short, it was a conversation about some of the sadness we have experienced in life with our disabled children. Different eras and different disabilities and I’m inclined to say their experience has been somewhat more extreme than mine for various reasons but non the less we share a life path in many ways.
I wanted to know about some of the lovely memories and positives she could recall. Apparently life had been so bad she just wasn’t able to think of any and she told me that my positivity made her feel more low! I tried to talk it through with her but unfortunately the conversation didn’t end well which has made me very sad.
I regularly have days or moments when the chronic sorrow (click here for a previous blog post about this) is present and times when it’s a real challenge and I want to tell the world to get lost. However, I have worked really hard to build my emotional resilience. It doesn’t happen over night and it takes a sort of practice. You don’t suddenly get a six pack after twenty sit ups, you practice and repeat (no wonder I’ve still only got a one a one pack). For me, it started to build once I had accepted our current reality.
The grief I felt at each stage during the realisation that life wasn’t going to be as I had imagined was overwhelming at times. That phrase ‘heartbroken’ couldn’t be more apt. When my Dad died, at the young age of 56 just two years before Freddie was born, I truly felt my heart had been smashed into a thousand pieces and I felt that same pain at times with regard to Freddie. The fear, worry and sadness was immense, especially during my pregnancy and the early days. This was compounded by the lack of diagnosis to explain Freddie’s special needs and disabilities.
Our Words Impact Our Life
I truly believe that the language we use impacts our state. The more negative you speak, the more negative you are. This is one of the reasons you won’t hear me say, especially in a workshop, that I’m ‘fighting for services” or “it’s a battle’ for Freddie’s therapy needs or that I am “inferior to the professionals” in our lives. Yes, it is a challenge and to be honest, I am exhausted most of the time but life is short. The words we connect to our experiences can become our experiences. There is a great book all about this, Words Can Change Your Brain, Dr Andrew Newberg M.D & Mark Waldman.
“A single word has the power to influence the expression of genes that regulate physical and emotional stress.”
“Angry words send alarm messages through the brain, and they partially shut down the logic-and-reasoning centers located in the frontal lobes,”
If we use negative talk at home about Freddie and his needs and challenges in front of him or Bella and Jago, they too will feel that negativity. Our words are their words.
We want them to grow with high self esteem. If Freddie thinks we are sad about him, I can only imagine he will be sad also. So, we celebrate his achievements each day, the same as we do for Bella and Jago.
I totally believe I can get anything, any service etc that I need for Freddie and that he can achieve anything with our love and support. It might take time and I might need to try many different routes but I am determined. Don’t get me wrong, I’m not a robot and I stumble and fall at times but that’s all part of it. You’ve got to believe you can do it to give yourself half a chance if achieving it. Thats just my way and what pushes me forward.
I choose to focus on the positive side for the majority of the time and I choose to see and celebrate the positives. I choose to make the most of our life together and experience as much as possible, just as I had intended before we had children and before disability entered our lives.
I always hope my positive state and emotional resilience is a source of encouragement to others. I know that not everyone is in the same emotional place as me and I get that, I really do. I was there myself and I still have a way to go but if I give in, I think it would be a disservice to our family.
No one experiences their life without difficult times and without some sadness but we can chose what we do with those experiences. x