Our bubble

Published August 28, 2012 by swanfreddie

One thing that seems quite common among some parents of SN children that I have spoken to is that we like to live in a bubble. For me our bubble has become a very important part in leading a ‘normal’ life. When you have a child with special needs there has to be some level of acceptance to be able to carry on with life which is where the bubble comes in to it. I suppose the bubble is like a protective shield, a place to hide that is happy and ‘normal.’
Living in a bubble is defined as a place to live sheltered from the outside world, which is exactly what we use it for. In the outside world 2 years olds walk and talk, in our bubble they don’t. In the outside world 2 years olds feed themselfs and are begining to potty train in our bubble they are not. When we are at home, just the 4 of us in our bubble we have a great life with Freddie. Most of the time hes a pretty happy little boy, he enjoys toys that spin & he loves to hit at his ipad. Most of the time we are able to block out the fact that he is severely delayed in his development & the fact he doesn’t walk or talk isn’t really even noticed any more. We embrace Freddie for who he is as a person. We don’t dwell on the fact he has some kind of mystery syndrome and we love his quirky personality. Hes a very unique little boy who makes us very happy.

But the thing with bubbles is that they get burst very easily. Today was no exception. We had to take Freddie to hospital for an eeg scan. I have been quite anxious about this visit as i’m not sure theres a good outcome to the scan. I feel whatever the results we won’t get any good news. Freddie has been doing lots of new jerking movements lately which has left me quite concerned. If these new movements turn out to be epilepsy then it means more medicines to try to control them or if it turns out not to be epilepsy it means more tests & more of the unknown. This is hard enough to deal with but then seeing Freddie getting very cross & upset over having the probes glued to his head is pretty heartbreaking. Then he had to have his eyes held shut & bright lights shone in his face to see how he reacts. It wasn’t a nice experience for him or me. Freddie was a very unhappy little boy the whole time. The nurse was brilliant with him though but it was as if as soon as we walked into the hospital somebody got a great big pin and popped our lovely, happy bubble and forced us to step into the outside world. To look at our son sat headbanging in his chair with all the wires connected to him, to realise that actually this isn’t normal.

Our bubble does get popped alot. Theres been many times when we have just been out for a walk and i’ve seen a little boy run past me & ‘pop’ i’m out of my bubble and everything dawns on me…Freddie shouldn’t be in this pushchair, he should be running too. We went to the beach a few days ago for a walk, Evie was running and having fun and again ‘pop’ went the bubble. Freddie should be playing with his sister, they should be chasing each other or even arguing! I’d give anything for them to argue! For Freddie to take a toy off Evie and say “NO IT’S MINE!” to just hear his voice.

It would seem since having Freddie my whole outlook on life has changed. Things that never used to annoy me now make my blood boil. There are days when it’s impossible to be sheltered from the outside world. Social media has a big part to play in this. I don’t even have to leave my house to have our bubble popped. I’ve found since having Freddie everything in life has become so much more precious. Maybe in some ways i’m lucky to have had my eyes opened, to realise how precious things in life really are.
I can be sat having a cup of tea checking out facebook & see people moaning about ridiculous things such as how boring it is sitting in the park watching their children play! Seriously i’d do anything to watch Freddie play in the park. They have no idea how lucky they are. Another thing that never fails to pop my bubble is seeing people use such offence, horrible words such as retarded without any care or thought to what it actually means & who it may offend.  A retard is defined as a person with a mental deficiency… Freddie is classed as having severe mental deficiency…
It’s time likes this where i’m so glad that I can go back into our bubble and appeciate our life. We may have a very hard time with Freddie but at least we don’t take life for granted anymore and are not shameful enough to use derogatory terms.
I’m sure I hope over the years our bubble may get a bit thicker and pop a bit less easy. But for now i’m still getting used to dusting myself off and scurrying back into the bubble everytime it bursts, back to our own ‘normal’ world(With a nice glass of wine waiting inside it for me!)

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3 comments on “Our bubble

  • This makes perfect sense to me luv, it’s a world I share with you often more so in the first few years before Archie went to full time school. I still have the dark days and I am guessing tomorrow will be one when I have my meeting with the head of disabled children’s team. But till then I am enjoying my bubble with my family xxxxxx well written mrs bubble

  • There are some pretty amazing things going on inside our bubbles. I know I for one have had my world view turned upside down by being catapulted into the Orange bubble and while it is often very hard indeed to be inside it and feeling pressure from the outside, I know I am a kinder, more tolerant person because of it. Sorry today was so difficult for you and Freddie. I’m very glad to hear there is a soothing glass of wine inside your bubble xx

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