Let me count the ways in which you frustrate me…

I have had this title sitting in my head for a while, finally it moved into my draft box and today a fellow SWAN Mummy inspired me to write it, as she had compliled a very similar list of her own.

You see I am always thinking, re-thinking, analysing, sometimes worrying, occasionly stressing and always making plans in my head. I find myself doing this whenever I have a spare minute (which isn’t all that often) Even as I sit here furiously typing away (so I don’t forget what I want to say) I have a dog sitting in front of me wondering where her dinner is, willing me with her eyes to go to the kitchen already and make it. I have washing in the machine screaming to be hung up to avoid being anymore wrinkly than it already is, guess that means I will have to iron this lot – darn! Pots and pans in the sink soaking and wondering if they will see the light of day again and a million other things that will just have to wait, just for a few more minutes. Just so I can get these thoughts out, before I forget them and they vanish to my version of Room 101 – good ideas that were sadly forgotten, never to be seen again.

Now that I write a blog all my thinking, re-thinking, analysing, worrying, stressing has a purpose. I now have somewhere I can put them, sort them out, sift through them and generally feel better about them. The difference is now I find myself, as well as this list, thinking of titles and posts, asking myself questions, What is appropriate? Will people find it interesting? Will they be bothered? Will I offend people? Then I find myself going with my gut, thinking about how writing the posts make me feel and if they have an impact and make a change then all the better.

So you may have guessed from the title I will be sharing with you some of my pet hates that I encounter on a daily basis. The ‘you’ is some of the general public, professionals and eventhough it saddens me to say it, some of my family and friends.

So here goes it frustrates me…

When you say, ‘There is nothing wrong with her, I mean look at her..’

This offends me greatly. Strangers who have never met Isabella can be forgiven, as her disbabilties are not noticeable at first. But people who know better say this. May be they are in denial (which is not at all helpful) may be they think it is what I want to hear – I can assure you it is not.

When you make Goo Gaa noises and coo to Isabella like she is a baby…

Isabella physically has been placed at the approximate age of a 4/5 month old, but she is cognitively much closer to her chronological age of 2. Isabella loves when you talk to her, the same way you talk to any two year old. Isabella will happily listen, laugh and respond in her own way. Sing to her and she will think you are the best thing since sliced bread.

The way you hold her like a bomb that is about to explode..

Isabella needs to feel safe and secure when you hold her. If you hold her with confidence she will fidget less and will be much easier to hold. Having said that she feels a lot heavier than an average 2 year old, as she doesn’t bare any of her own weight.

The way you look at her with teary eyes and cuddle her like it’s her last cuddle..

Isabella doesn’t understand when you cry. Isabella doesn’t need your sympathy she needs your support. She can breath, eat, drink, laugh and is very happy. So please don’t feel sorry for her.

When you say, ‘Oh she still takes naps in the day?’

Yes she does. It takes a lot of effort and energy for Isabella to do things. Although she is not walking, her body works very hard all of the time. She has an hour of physio a day, goes swimming, goes to groups and is constantly trying to sit up, practices standing and pushes up on her tummy. She does all of this as well as digesting and taking in everything around her. So it is no wonder she needs a nap to recharge her batteries.

When you say, ‘She is such a Mummy’s girl!’

Yes she is. We are very close. I am her Full Time Carer and understand her inside and out and she knows this. She feels safe and secure with me and in new situations will look to me for reassurance.

When you say, ‘She doesn’t like me!’

This is not true nor particularly helpful. Isabella needs time when adjusting to new people, or people she hasn’t seen for a while. She will go to you, just give her time and space. Remember if she was walking rather than cry and get upset, she would probably walk away and find some toys to play with and come back to you when she was ready.

When you continually rock her and cuddle her like a baby..

Isabella is not a baby. She loves to dance in your arms to music. She loves to be on the floor interacting with you. Put her on her tummy and she will roll over. Sit her between your legs and play with her she will reach for toys, but will need your help in holding them.

The way you stare…

If you have a question I would rather you ask. It is not enjoyable having eyes boring into you and it is not very polite. It makes me feel uncomfortable and as time goes on Isabella will begin to notice it too.

So there I have given you an insight into some of the things that frustrate and sometimes upset me. These things don’t all happen, all of the time, but I can assure it is not pleasant when they do. This list isn’t typical of everyone, we do have good experiences and in general people handle Isabella and her condition very well. I just felt a lot of empathy for my fellow SWAN Mummy when I read her list and thought it may be useful to share mine too…

Here is the link to the post that inspired me to finish writing mine. It is a new blog by a lovely fellow SWAN Mummy.

http://stressedbutsurviving.wordpress.com/2012/07/16/20-things-not-to-say-about-my-son/

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4 thoughts on “Let me count the ways in which you frustrate me…

  1. A really good blog to help you air your feelings,hope people will take it on board without being offended and if they genuinely want to help to understand Izzy and you they won’t!!! Well done,sending you big hugs and kisses oh yeah and tomorrow they for real!!! See you tomorrow 🙂 xxxxxxx

  2. A great blog and well put. It saddens me to think that people are actually saying these things to you and to other SWAN parents, another reason for disability awareness! This blog will certainly help with that. x

  3. At first when I read your list I felt angry – how can she be so unforgiving of people who are doubtless well meaning but simply don’t know how to respond to Isabella? Then I realised that if there were more people brave enough to speak out and help those of us who maybe don’t know how to respond to disability in as constructive a way as we would like to, then one day there might not be a need for lists. I’ve learnt something important and humbling today – thank you.

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