The invisible cord…

Isabella and I do practically everything together. We have to. I am not only her Mother, I am her Carer, her voice and her advocate. Like I have stressed in previous posts Isabella cannot do anything for herself, she is totally dependant on me. I never returned to work, so I could care for her and I wouldn’t have it any other way.

We fill our week days with what most mothers (or fathers) that stay at home would. We play, go shopping, have lunch out, visit parks, farms, visit the library, walk our dog Daisy and go Swimming and to Music groups. Then we do things that most children (unless they have a disability ) wouldn’t. We have our physio sessions in the morning, administered by me. We practice sitting, rolling and pushing up on Isabella’s tummy. We practice trying to hold objects and take objects out of pots. (This is done with my hand over Isabella’s, as she is unable to do this herself.) Then thrown in for good measure we have visits from the Physio, Occupational Therapist, Speech and Language Therapist and Advisorary Teacher. So our days are pretty full as you can see and we are always on the go. Most of this is done while Daddy is at work.

When Daddy comes home he helps with feeding Isabella dinner, her evening playtime, bathing her and putting her to bed. He often says how he couldn’t do what I do everyday and is very happy that I decided to stay at home with Isabella and spend all this time with her. As a way of showing his appreciation and getting some Daddy time with Isabella, on a Saturday he will give me a lie in whilst he gets up with her, gives her breakfast, does her physio and walks Daisy. Then when I get up I feel refreshed and we can spend the day together as a family.

Now I love our family days out, but I also love my ‘Mummy Days’. These are days where Daddy will take Isabella out for the day, so I can do whatever I like. Now it may not be to everyone’s liking but I usually choose to have a ‘Duvet Day’. Some women would take themselves off to be pampered, go shopping or meet up with friends. Not me. I am very easily pleased and like to do a whole lot of nothing.

My days are so busy with Isabella and I am certainly not complaining. I love my days with her, but it has made me appreciate the simple things in life. We are usually darting off to a group or rushing around to get back for an appointment, so simply doing nothing is a luxury.

I start the day off with a lie in. I have never been one for staying in bed all day so I am usually awake by 9:30 am. I will then drag the duvet into the front room where we both will remain for the rest of the day. I will enjoy a leisurely Quorn sausage and egg sandwich and a diet coke (not the healthiest breakfast combination I know!) but I don’t have many vices, I rarely drink and I don’t smoke. I then watch chick flicks and US boxsets throughout the day whilst snuggled in my duvet and eating chocolate.

Now reading this you may think I am a professional at doing nothing and relaxing, it took some practice believe me. The first time Daddy and Isabella left me I sat there wishing I was with them. I then wasted time thinking about what I could be doing. It felt strange not doing anything. I was under strict instructions to relax and not to do any housework! I failed miserably. I was pottering around whilst the bath was running and it ran cold. I had wasted so much time ‘thinking’ about what I could do, by the time I had finished my cold bath, it was nearing lunchtime. I also burnt my sausages and overcooked my eggs. When I finally sat down and relaxed I found it wasn’t that hard. It was actually very, very enjoyable. I recieved a text from Daddy and Isabella and they were having a ball. I realised it was ok to relax. Isabella was fine. It was my time to relax and do nothing, and that is exactly what I did.

I like to watch chick flicks and US Boxsets because they are so very different from my own life. It is not because I wish for a different life, it is sometimes nice just to be lost in a world that isn’t your own. Having said that being a Mum changes you. I could watch these ‘crappy’ (as my Mum would say, I disagree) US shows and get totally absorbed and distracted from my uni course work and not really be affected. Except for the romance, always a sucker for romance. Always hoping that Paul could sweep me off my feet in the same way.

Now as a Mum watching these shows I find myself reacting to anything to do with children; a mum and daughter argue, I cry. A child gets bullied, I cry. A child gets hurt, I cry. A child dies, I am practically struggling for breath and hyperventilating. You get the picture.

As a mother of a disabled child I find myself reacting in other ways. Crying when the little boy rides his bike without stabilisers for the first time, wondering if Isabella will ever walk, let alone ride a bike. Crying when the little girl turns to her Daddy for advice, wondering if Isabella will ever talk. I think I react in these ways as Isabella isn’t there. So a part of me is missing her, asI feel a tug on my invisible cord and the other part is allowing myself to cry the tears that I hide from Isabella. Now this doesn’t happen for the whole of the day. Just a small percentage. It is just a tiny blip. Just a release of emotion. The rest of the day I am back to drooling over the fit guys, wishing I had the girl’s figures and style, wishing my hair was as shiny and wishing Paul could sweep me off my feet in the same way as the fit guys!

Even though Isabella is happily spending the day with Daddy, I find myself thinking oh it’s ‘lunchtime’ or ‘snack time’, but I have no little mouth to feed. So I just feed my own big mouth! It is strange when Isabella isn’t around, it is like I have lost an arm. I think that is another reason why I choose to stay in, as when I am anywhere without Isabella, I never know what to do with my arms, as there is no buggy to push. I talk to myself, as if Isabella is there. I look at other children and their parents as they pass me by. It is indeed very odd. Having said that it makes food and clothes shopping a hundred times easier.

I digress. This Saturday I got so engrossed in a show that I sat in my PJ’s all day and took myself off for a bath at 5pm. I made the mistake of not bringing music in. Now I like the quiet but this was just too quiet, I could hear my own heart beating in my chest. After a day of doing very little I was relaxed and chilled and was ready for Isabella and Daddy to come home.

The smile that greeted me when she came home gave me such joy and warm fuzzy feelings in my tummy. She was so happy, as was Daddy. They had a wonderful day, as had I. It is always lovely to see her so happy with her Daddy, that also gives me the fuzzies.

I love the time I spend with Isabella and the time without her. When I am away from her my invisible cord keeps me close to her and reminds me how special she is and how much I miss her, even if she is just away for a day.

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3 thoughts on “The invisible cord…

  1. Ahhh. You will be amazed at how flexible the invisible cord is. It can stretch well over 3000 miles you know. Love and miss you both loads xox

  2. Brilliant blog. I can really appreciate the joy of doing nothing, and having to learn to relax, and crying at things that would never have affected you before, and… well everything!

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