Reality Bites…

Every family are on a journey. Our little family is on a journey too, only our journey is different, we don’t know where we are headed. My good friend and fellow SWAN Mummy recently blogged about her family’s journey. She likened it to a car journey, with the car becoming more packed and the load becoming heavier with the equipment and the extra passengers on board http://areyoukiddingney.wordpress.com/2012/10/05/signposts-milestones-and-millstones/ I can fully relate to this and it has inspired me to continue with the car theme to describe our journey.

Our journey started about 2 years ago. At that point our load in the car was very light, just me Isabella and her Daddy. (and Daisy our Dog) We were sat in the Car Park for sometime, waiting for someone to tell us our destination. We had a map and we were guessing as to where we were headed, but were clueless. Now as the time has gone on the destination is still unknown and we are still clueless, but we are on the road. Our car is pretty full and we have a SALT, OT, pediatrician, Advisory Teacher, Neurologist and Physio on board. Not to mention the specialist equipment; a standing frame, corner seat, bath seat and Bee chair. The journey to date has been particularly bumpy and on many occasions we have wanted to throw some of the passengers out of the car! Like any long car journey tempers can become frayed. We have had scheduled stops and had to make a couple of detours, on the whole we have kept chugging along. Very recently though I have found the car coming to a stop sign suddenly, usually when this has happened we have stopped briefly and motored on.

This time with myself behind the wheel I have stalled the car and struggled to move off again. The stop sign on this occasion was Paul and I watching our Wedding and Honeymoon Video with Isabella. We were watching it, as we were showing Isabella where we are going on holiday for Christmas. You see Paul and I got married in Las Vegas and thought Isabella would love the bright lights and all the sparkle that is Las Vegas.

We looked at each other, as we watched back the vows that we had written. Paul told me that he couldn’t wait to start a journey with me that began that day. I felt my throat get tight and my eyes fill, then I saw myself utter the words that I wanted to have his children. I swallowed hard. Later on in the video both Paul and I apologise to our future children; Paul for swearing and myself for talking about my wedding negligee!  I looked over to Isabella, she was unaware of Mummy and Daddy on the telly or what she had heard. She was busy smiling, as she does, watching her hand that involuntarily moves into her line of vision. I held her hand and kissed her. That I think was one of the very first times the reality of it all stopped me in my tracks. I truly understood the meaning ‘Reality Bites’.

Then however she did something that made me want to cry with happiness. Although hadn’t seemed to notice Mummy or Daddy, she heard a familiar voice and looked directly at the telly and smiled. It was her Grandfather my Dad, Pops as she knows him. She laughed. Perhaps she had thought it was like skype, either way it made us both very proud.

Chugging along in the car these past few weeks there has been a lot of debris in the road that we have had to swerve around and on occasion stop and fix a puncture. Just this Saturday I was out food shopping without Isabella. Food shopping is never particularly pleasurable and this time it certainly wasn’t. I heard a Mother say to her child, who was sitting in the trolley blowing a windmill, ‘If you blow that windmill in my face one more time, I will stick it where the sun doesn’t shine!’ I was gobsmacked. Even the gentleman next to me was taken aback. Then a few minutes later I heard a Father say to his Daughter, ‘Will you just shut up I am trying on concentrate on shopping!’ I don’t know how I didn’t slap these two ungrateful people and tell them how lucky they are to be able to have a conversation with their child, for their child to say I love You. I have heard comments like this before, but this time they really got to me. It could have been for the fact that I had my right arm missing, whatever it was it threw me of kilter.

Just today I was in awe of a Mother and her Daughter, this time it gave me happy thoughts not anger. The Mother was sitting across from her Daughter. They were deep in conversation. Both of their eyes were twinkling and they had the biggest smiles on their faces. The little girl wasn’t much older than Isabella. (Then again she could have been, as I said before I have no concept of children and their ages.) They reminded me of Isabella and I. We often sit and chat. Isabella’s beautiful eyes twinkling and her smile captivating me. My eyes twinkling with her beautiful reflection and smiling because her smile is contagious. Anyone looking at the pair of us would see a Mother and Daughter with a very strong bond and a great love for each other. If they listened in though they wouldn’t understand the conversation, they would get the gist though I am sure.

I can’t understand what Isabella says, I can only guess. She may not be able to speak in the conventional way like you and I, but boy does she try. She screams and yells in excitement and giggles and laughs. I know in her own little way she tells her Mummy and Daddy that she loves them very much and although we hope that in the future she will say more, just seeing and hearing her like this makes us both very happy.

A while ago Isabella and I were out shopping together. We keep our shopping trips short, as Isabella is not a fan ( I think Daddy trained her to dislike shopping!) I saw a Mother and her Daughter out shopping too. Her Daughter was in a Wheelchair. They were both smiling and laughing. The Daughter was much older than Isabella – a Teenager. The Mother was slightly older than me, slighter more grey and a bit more tired looking, but she was happy. They both were. It may have been a glimpse into the future..

So having taken a brief stop I have refuelled and I am back on the road now chugging along, once again. I know there will be lots more unscheduled stops along the way, bumps in the road, diversions but I (we) can face them head on and ‘As long as Isabella is happy then we are.’ That is our family slogan, our bumper sticker, the rule we live by.

It is SWANderful here…

Today is National Poetry Day. I wasn’t aware of this until a friend posted a poem she had written about children with ‘different’ needs, she doesn’t like to use the term special. She is the Grandmother of a lovely little fellow SWAN. Here is the link to her beautiful poem.

http://www.nanny-anne.blogspot.co.uk/

So following on from her theme and since it is National Poetry Day I thought I would share with you all the poem I wrote about what my SWAN family means to me. So here goes..

It is SWANderful here..

I found this group about 6 months ago,

And it didn’t take long for me to love it though,

Here we can share in our hopes and fears,

And share in our happiness and our tears,

 

Here there are no quarrels, anger or hate,

We are one big family- some might call it fate,

There is always someone there day or night,

When you feel down and no hope is in sight,

 

If you have been made to feel irrelevant and small,

The response you will receive will make you stand tall,

Lots of virtual hugs and kind words will come your way,

Making you feel brighter and lifted to get on with your day,

 

There is always someone there to share in the good,

And no matter how small you are always understood,

From learning to walk or simply holding a cup,

We all understand that our SWANs never give up,

 

When others fail and make us shout,

Here it is safe to simply let it all out,

To have a rant, a scream and a moan,

It makes you feel better knowing you are not alone,

 

The SWAN family is far flung and wide,

But with the click of a button you are by my side,

All of you have played a great part,

And share a place within my heart.

Sticks and Stones…

The well-known phrase says;

‘Sticks and stones,

May break my bones,

But words will never hurt me.’

I am sorry but I beg to differ. Words can hurt, they can hurt bad. They can sometimes hurt more and much deeper than physical pain. Sometimes the words that hurt aren’t meant to be spoken, they are accidental, unintentional, perhaps at cross purposes or said in anger or frustration but they have been said nonetheless. They have been released into the air, heard, absorbed and usually they are hard to forget.

This week a lot of my fellow SWAN Mummies have been made to cry over words that have hurt them. Words that they didn’t want or expect to hear. Sometimes what makes the pain harder to bear is the delivery of the words. The tone in which they are spoken in can often make the pain unbearable.When something is said so cold and matter of factly it can really hurt.

As parents of disabled child very often the words we hear aren’t meant to hurt intentionally. For example Isabella and I go to lots of groups where obviously all her friends are now walking and talking. On a few occasions I have heard sentences like, ‘Now that all our little ones are walking..’ Ouch painful, but by no means deliberate. In fact I don’t want people to have to make reference to what Isabella can’t do as that would be worse.

It has happened with friends and family as well, again by no means intentional but a bit painful nonetheless. Someone with a little girl younger than Isabella said, ‘I can’t wait til she is out of nappies and out of the baby phase.’ Slight stabbing pain, as Isabella may be in nappies for a very, very long time.

Then of course there are the times when people don’t know anything about Isabella’s situation and pass comment and use hurtful words. Here is a for instance. Isabella and I go swimming to our local swimming pool. On a Wednesday we attend the Disability/50+ session. (Personally I think it should be two separate sessions, but that’s another story. ) There is nothing special about the session, just that the only people allowed in the main pool are those that are disabled and 50+. I was warned a member of staff that some of the older people may look at us funny, however the first session passed without a problem.

The following Wednesday we went back. No sooner had Isabella and I stepped into the pool I felt and saw eyes boring into us. It was one lady in particular in a delightful purple floral swim cap. She couldn’t take her eyes off us, but she was too far away from us for me to say anything. So we continued our swimming session trying to ignore her, however it was very difficult. She got out of the pool close to where Isabella and I were swimming. No sooner had she stepped out the pool she collared a Life Guard. She hissed at the Lifeguard, ‘Why is that little girl was in the pool, she should be in the baby pool, she doesn’t belong here!’ I felt my blood boil. I shouted to her, ‘Excuse but my Daughter has every right to be in here she is disabled.’ She heard me, I know she did because she stepped away from the side of the pool and the Life Guard followed her. I could no longer hear what she was saying.  I could see she was angry from the way she was waving her arms around frantically. The minute she finished putting her two pence worth in, the Life Guard came over to apologise. It was the same girl who had warned me about how difficult the old people can be. She told me that the lady had said that Isabella should be in the baby pool for her own safety, apparently she wasn’t listening when the Life Guard told her Isabella was disabled. I was seething. What gave her the right to question our being in the pool?

I was cross, but I calmed down so Isabella and I could enjoy the rest of our session, but it plagued me. I said quite loudly to Isabella in the changing room, ‘That old Lady best not be in here or else she will have a piece of Mummy’s mind.’ We got changed and sure enough on the way out I saw her at the mirror. She was no longer wearing her Floral number but I recognised those pursed lips. I said to her ‘Are you the lady who has a problem with my Daughter being in the pool, she is disabled!’ She turned to me, mouth wide open. Crap, Crap I thought it’s not her! Only it was. She went onto tell me how she was only concerned for Isabella’s safety and thought it best that she go in the little pool. I went on to tell her that I am her Mother and responsible for her and can take in her in which ever pool I please. The next thing she said infuriated me further still. ‘Sometimes the older ones come in, oh and they make such a lot of noise and fuss and they writhe and splash around. Terrible it is, so may be then you should take her in the baby pool.’ I could have slapped her. By the older ones, she meant the teenagers who we passed in the changing room. They had obviously swam before us and clearly their enjoyment in the water annoyed Mrs Floral Cap. I told her quite frankly that I didn’t need her advice. She could see I was upset and she tried to touch my arm and stroke Isabella. I pulled away. She asked me if I will see her next week. With a great degree of dignity and firmness, I told her yes she would. Funny thing is I haven’t seen her since.

Then there are the hurtful words that are completely intentional and deliberate. To date I have only had one experience, but no doubt over the years will encounter many more. We were shopping back in the Summer and we passed 3 girls who were at a guess 9/10 years old. They smiled at me and looked at Isabella, as I walked by I heard them laughing. ‘Ha ha look she’s disabled.’ I froze and said nothing. I was shocked I guess I couldn’t believe they had laughed at my little girl. They were only little girls themselves, but old enough to know better. They had laughed at my little girl, used the word ‘disabled’ in a such a way I haven’t forgotten about it. So much so the next person to laugh deliberately at my little girl will know about it. There will be no freezing next time.

I honestly don’t know who wrote ‘sticks and stones’, but they were wrong, very wrong. Words can hurt and their impact can have a lasting effect.

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.

Life in a slightly slower lane..

When you have child it changes your life. Just how much it changes is up to you. Every decision you make is made with your child in mind(well it is in our case) Where you choose to live, work and go on holiday all have an impact on your family.

Now anyone who knows me well knows I used to like a good drink or ten. Paul and went out a lot drinking or would stay in drinking a lot! That obviously all stopped when I fell pregnant with Isabella and I haven’t really returned to that since she was born. For two reasons a) I can’t hack that pace anymore and b) my priorities have changed. Now don’t get me wrong I still like to drink and have a good time, just not as often and not to the extent that I used to.

Having a child means you have someone else to care for and look after. You are no longer number one – they are. Isabella and her needs means she needs more looking after and caring for than most. Her needs are much greater and she has and will always come first. As Isabella cannot do anything for herself she is fully dependant on me and Paul. So we cannot afford to be anything less than 100% on the ball. This means on occasions we have to forgoe somethings. That is something we have accepted and I for one don’t resent that fact.

We don’t have family living close by, so we cannot do things last minute or spur of the moment like we used to. Isabella is very weary of strangers, so I wouldn’t leave her with just anyone. One of my best friends lives about 50 minutes away and is wonderful with Isabella. She has been there from the beginning and she knows Isabella very well and Isabella feels very safe and comfortable with her. This in turn makes me feel confident and comfortable in leaving Isabella with her.

Having someone like this in our lives, gives Paul and I the outlet we need. The chance to go out together and spend some quality time together. Don’t get me wrong other people have offered but without seeing Isabella regularly, she doesn’t know these people as well and similarly they don’t know her. So leaving her in the day or night with someone she didn’t know would make me feel anxious and I wouldn’t be able to relax.

Some people understand the situation others find it difficult to get their head around. Friends have said can you not just a get a baby sitter, if I have had to cancel on a night out. Simple answer, No. If Isabella woke in the night screaming (which she has been known to do ,we think they are night terrors) and a stranger went into see her it would freak her out and she would be uncontrollable. Isabella is heavy and when upset she writhes around in your arms and arches her back. I know how to hold her and calm her down, often it isn’t what I do, it is just because it is me – Mummy. A stranger would panic and Isabella would sense this and it would make her worse. On occasion even Daddy is not good enough and the screaming reaches volumes I am sure villages miles away can hear.

The fact that we don’t get to go out together as often as we used to means that we really appreciate the times when we do. I usually go all out and buy a new outfit, slap on some war paint and wear heels! The heel wearing is because I wear flats all day everyday and having heels on makes me feel feminine and sexy. Sadly I don’t look either sexy or feminine as I have lost the ability to walk in heels. I now look like a drag queen and more often than not, they spend more time off my feet than on them!

With my drinking habits having totally changed, I am a complete light weight. Friends that know me would argue I was a light weight anyway. In fact before Isabella I had the nickname ‘Tracey Two Sips’, meaning two sips and I was drunk!! Now that isn’t very far from the truth at all. I am an extremely cheap date. Now that I am all grown up and mature (supposedly) and a Mummy I often move onto water, as the thought of dealing with hangover and a hangover with Isabella is not at all appealing for either of us.

Now don’t get me wrong I still let my hair down and there have been nights where it has got a bit messy and the night’s events somewhat hazy, but they are far, far less frequent. They have to be, it now takes me about a week to recover from a heavy night out!

So I may be living life in a slightly slower lane than my friends, but I really don’t mind. I do enjoy the simpler things in life. In fact there have been nights where it has taken so long to get served at the bar, my feet were aching from my heels, that I actually wanted to be at home with a pizza, a movie and in my Pj’s!