Time for some (not so) SENSEless humour!!!

You know, sometimes you can have the best intentions but things just always have a habit of getting in the way. Like when you make New Year’s resolutions…… you have all these plans for exercise regimes, less drinking, quitting smoking, starting something new and healthy, a diet maybe…. but there is always some VERY GOOD reason why these plans never come to fruition.

Well that’s what’s been happening with me and my training regime. I had all these great plans last week to up the ante on my training regime for my 100km walk of death. I was going to be walking across the hills and spending hours and hours fresh air being at one with nature, getting my little legs prepared for 24 hours of gruelling non stop walking when the fire happened….. yes…. you heard me…

FIRE!!!!

I have been walking everywhere as much as I can. The car has been ditched and wherever possible I am walking. I wouldn’t say training because there is only so fast one can go with a toddler in tow. First Born even got in touch with me and told me he was so touched by the tribute to walk 100km in commemoration of his impending 18th birthday and in aid of the charity SENSE who do some fantastic work for deafblind people and their families.

However, he quickly texted me after walking to his English tutor, a grand 1 mile and 20 minutes later, and said that perhaps it would be too much but he was willing to take his Toddler sister Child to the park and play on the swings with her whilst I did power circles of the park.

Read our walk story here!

This did bring me some sense of relief as I have to admit, I was imagining the scenario that would ensue if he even managed walking from morning into night fall and then freaked out. We would probably be in the middle of nowhere in the country side, not a road in sight, darkness would be upon us and we would be struggling even to have an argument about how I would get him home for lack of being able to see each others hands!!! So we planned a trip to the park.

I packed up the picnic and got us all dressed, walking shoes and all. Yep! I’m still breaking them in, I wear them every day. They are what I can only describe as my new “signature accessory”…. I tell you, my signature has somewhat deteriorated these days!!!

Anyways, there I am… about to leave the house and as FATE would have it, the phone rang. Now when I say “fate”, I don’t use that term loosely in this scenario. This was a proper INTERVENTION from the divine… or maybe it was SENSE coming to our rescue once again. They called to talk through a few things for a press release and I got tied up on the phone with them for about 15 minutes. When the call finished, I went into the living room and announced our timely departure when I smelled smoke.

YES …… SMOKE!!!!! I looked around and could see no smoke. I asked my friend who had been waiting if they could smell smoke?Had they created any smoke at all whilst I was on the phone? We both smelled it. My senses were not fooling me. We quickly went into the kitchen to find the source……

NOTHING….

Like fools we opened my kitchen window and climbed up to have a look outside to find the source…. were one of the other apartments on fire? Were we both being fooled by our noses? Finding nothing, I decided we were leaving and turned into the hallway where I discovered nothing but smoke billowing down the hallway. I went running into the bedroom and there it was……. My expensive John Lewis curtains were going down in a blaze of glory!

Toddler Child had climbed into my window where a lamp resides. You know those ones on a flexible hose like thing? She only turned the bloody thing on, pulled the curtains and  left when I had called for us to go to the park the first time! The flipping curtains had been so super heated by the bulb that they caught fire! My friend and I wrestled to pull it off the curtain pole. Why in God’s name I had secured it so well to the pole was now a mystery to me. And how on earth the children manage to pull the curtains or rails off the walls so effortlessly when I want them to stay up was also a mystery. Here I found myself struggling with this burning mess that wouldn’t budge. Of course we threw that thing in the bathtub so fast and doused it with water thereby creating even more smoke!!!!

Windows were flung open, doors pushed open, fans brought out. My friend and I were choking for breath and trying to air out my apartment with tears from smoke irritation running down our faces. Meanwhile Toddler Child walking around with shrugged shoulders repeating;

“Oh no….. my house on fire….. smokey smokey”

YES IT’S FLIPPING SMOKEY!

read about the great work sense do!

Needless to say, she now knows not to turn on the lamps anymore and the super power training regime went out the window that day as we spent the afternoon clearing smoke out the house and ash from all over the floors! However….. Tomorrow, my walking partner and I will be walking with all of the toddlers and we will be walking for hours and hours. Admittedly yes, we may have to stop for ice cream…. for the kids of course… but there will be training being done.

Coming back to my point about “FATE” however…… if it weren’t for SENSE calling me there and then, I would have left that house and the curtains would have burned to the floor and ceiling, probably ignited the rest of the apartment and the whole thing would have gone down in flames!

click here to sponsor me

Ironically, I noticed that the hole the fire left in my beloved window dressing was heart shaped…… funny that!!!! Just like my Virgin Money Giving Page! I figure it’s a sign! The sponsors and Donors have been rolling in nicely. Thank you all. Please keep sharing our story and the reason we are rallying for sponsorship. Will let you know how tomorrow’s walk goes!!!

P.S. I understand that if you are donating from outside of the UK that paypal might be the best option.

 

They’re not dumb…. you are. Have some SENSE!

It seems like yesterday, or not so long ago but how times have changed. First Born has been communicating with me a lot about how attitudes towards the deaf have changed so much in his lifetime, and it is true. They really have, but there’s still so much to be done to raise awareness.

I remember years ago when I was a young girl, there were a couple of families within our extended social circle that had children with “differences”. I never met them though. I think very few did. This was the way back in those days. “Difference” was to be hidden. To be “different” was taboo and was never acknowledged or spoken about.

As times moved on and the education system changed, inclusion became a hot potato and society was forced to deal with having children like these in and amongst them in mainstream schools. I’m so happy that I’m the age that I am and I didn’t have my son in those times. Society’s views were not moving as fast as those of the government or the parents of lesser abled kids or even the children who had these difficulties. Though integrated into mainstream schools, they were still shunned.

I read a book when First Born was still toddling, “The Feel of Silence” by Bonnie Tucker. Tucker grew up in America in the 40s. She lost her hearing at the age of two and was forced to continue to be aural though profoundly deaf. Her parents never let it be known that she had a hearing problem and her mother went to great pains to teach her how to use her voice. It’s a read I highly recommend, even if you have no ties to anyone with hearing loss or other type of “difference”.

Tucker’s book is a funny, witty and intimate memoir of her life. I remember being blown away by how this remarkable woman got through life in a hearing world without support from others as her deafness was unknown to all but her immediate family. Things I was taking for granted like waking in the night when my baby cried to tend to his needs. Tucker had to train herself to wake and check on her babies intermittently through the night.

She had a successful career as a lawyer, married and had children, divorced and continued to raise them on her own. I take my hat off to this woman and give her every credit for her success. As heart warming as her story is however, it’s not a true picture of how the deaf world can be. She lived in a time when “differences” were hidden away. She survived. Not only did she survive. She has an incredible success story.

Sadly though, mainstream society is fooled into thinking that all deaf people can speak. They assume that all deaf people can lip read. Like it’s some sort of compensation from God….. “I’ll take away your hearing but give you the gift of lip reading”.

No no no no no!!!! It doesn’t work like that!

I used to get so fed up of explaining this to people over and over and over again. You can’t just shout louder. You can’t just make a deaf person hear, or talk. It’s like a double edged sword though however. We want society to change and to embrace difference. But how are they meant to embrace it unless they are educated into what that difference entails. As a parent of a deaf person, or for a deaf person it’s probably worse. The incessant questions are tiresome. I say this is tiresome for deaf people but to be honest, it’s tiresome when dealing with any type of “difference”.

Society is in a state of metamorphosis right now. People are open to being educated about difference and to embracing it into everyday lives. We live in a time now where society is ripe for including all levels of ability – physical, mental and emotional – into what will become “normal” one day. A time where we won’t have “disabilities” hidden away or sectioned off into safety zones. We want to aim for a time when we recognise that;

EVERYONE IS ABLE BUT DIFFERENT IN THEIR ABILITY. 

The education of difference must continue.

I can advocate for deafness and some other differences. For instance; I can tell you that how aural a deaf person is depends largely on how profound or small a hearing loss they have, when they lost their hearing. Perhaps they already had speech? More importantly, I can tell you that lip reading is not a given. It is a gift and even then it must be honed and worked on. The same way a person has an artistic skill, they may have a lip reading skill. To an extent yes, it can be learned but really successful lip readers have a gift.

Often I would be asked when I said my son was deaf, “Can he talk?” I would try to explain that because he was so profoundly deaf AND had never heard speech that this was difficult. I would often hear the term “Deaf and Dumb”. This really old fashioned term used to make me so angry. Angry at the person using it, angry on behalf of my son who is in fact one of the most intelligent people I know and I would hear myself screaming inside…

“HE’S DEAF, NOT STUPID!”

Times have changed though. We hardly hear terms like that at all anymore. The movement for deaf people has been amazing. It’s a hard task to do as an individual though sometimes. For a deaf person I imagine they want to experience life, not continually explain their existence and deafness to everyone. I certainly know as a parent I found it tiresome, wanting to enjoy a day at the park with hearing peers and their children but finding myself having to explain “deaf” rather than just enjoy the day.

This is why organisations like SENSE are amazing. They work to raise awareness in society and clear a path so that the deaf/blind/deafblind may enjoy life; rather than explain it and go into the world without fear of ridicule, questions, even a raised eyebrow or slighted glance and just be themselves.

Please help me to help them continue in their plight to offer the support and advice to the individuals, families and communities of people like my son so that they may enjoy the things in life that we take for granted. Click on the Virgin Giving Money link to sponsor me in my 100km walk on May12/13th 2012 in their honour. If you would like to read more about my family’s story and why I’m doing this walk, please click here.

Spread the word, share these stories and let’s see if we can raise the £3,000 target I;ve set to try and raise. In the meantime….. I’ll keep walking in my efforts to train for this event. (If anyone knows a good masseur who’s willing to meet me at the finish line, I’d be most grateful! 😉 )

P.S. If you think lip reading it that easy, put on a pair of headphones, play your music really loud and try to see if you can interpret what someone is telling you. Also, if you ever do encounter a deaf person, don’t be afraid to try to use gestures, even if you can’t sign. Use facial expressions for sure and if you’re really struggling to communicate, don’t give up; use a pen and piece of paper, or type it out on your phone. All deaf people try to follow some lip patterns as well, regardless of how good they are at lip reading. Don’t shout at them. Speak slower and try to emphasise your lip pattern (WITHOUT patronising them). Keep your lips toward them and don’t block your mouth. Have a look at the video clip in the link below.

The deaf don’t want to be patronised OR ignored.

They just want to be heard too!!!

Thank you again to all of you who have been donating and sending kind words of support. If you can’t help by donating just a pound or two, please help by raising awareness of this challenge by sharing, spreading the word or help by raising awareness on behalf of deaf people by sharing what you may have learned today!!!

 

Nothing is making sense anymore!

When I first started this blog just under a year ago, it was meant to be a hilarious diary of the stuff I encounter on a near daily basis whilst I experimented with writing. As it turns out….. it would seem that I have a rather eclectic style of writing. I don’t seem to be able to write in just one fashion. Trouble is, my friends have been on at me to write a book for years now and I can never come up with the story. I don’t have “A” story. I have several. I have been trying to merge all these stories in my head for months now and to come up with a “genre” in which I can pigeon-hole them and today I realised that I can’t. So maybe I don’t have a book to write. Maybe I just have several stories to tell…. hopefully some of them with a moral or best case scenario… maybe I’m sitting on a trilogy of books in my head.

Today I went walking. No easy feat when Toddler Child insists on walking with me…. so I wasn’t exactly doing the power walking for the training regime I wanted to do, but at least I was breaking in the walking shoes. Middle Child has gone off for the week and oddly, this leaves me feeling like there is a bit of a gap to fill, both physically and mentally. First Born also brought up the topic of cochlear implants last night which was quite profound and, over breakfast this morning, he made me watch a very interesting  YouTube video which was even more profound.

On my walk, I started hashing over some of the events of his early life on the back of the whole cochlear implant topic. I asked him outright if he thought it was something he would want now. His response was “No. It’s just good how deaf people are more accepted now”. And it’s true. I remember back when he was a tiny baby, it was rather taboo to be “different”. I don’t like using the word “disability” because it’s never a disability unless you allow it to be. It may make things more challenging, but owning your “difference” can make all the difference. It’s the people and society around you that are disabled!

When I was first letting people know that Josh was deafblind, the first things they would ask is what surgeries he could have to FIX that. Also, in some circumstances they treated him like he was contagious. People would stare, stay on the other side of the room and keep looking at us but not talking to us. I would avoid the mother toddler groups because I was made to feel like we had some kind of contagious disease. One of the most hurtful things I remember was sitting at a family gathering with members of my extended family that I hadn’t seen for a long time who had come to visit from far away and they actually took their ward of kids away as if they would get infected. I was so hurt and upset. But when I look back now with the wisdom I’ve acquired over the years, I’m glad they did this. I’m glad the people who shunned us in one environment or another did so because there was an infection to be had. We weren’t going to infect anyone but I’m glad they did not infect my son with their prejudices and warped outlook on life. We weren’t the ones with the problem…. they all were. My son’s deafness did not need FIXING.

People just need to be more AWARE!!

I thought about Joshua’s early days and all that he went through and we all went through as a family. Often times in those early years of his life, people would pity me and say how sad it was and how sorry they felt for me and him and my family. Thing is though, I had the benefit of being on autopilot then. We were so consumed with hospitals and appointments that there was no time to stop and think about any of it really.

I remember when I was pregnant with him, I sat staring out of my parents’ living room window deep in thought and my father enquired as to what I was thinking. I was worrying about the kind of life I would give him. I was young and didn’t have very much money, but I dreamed of being able to send him to the best schools and being able to give him the best in life and I knew I was in no position to do so. Little did I know, I had much bigger things to consider than what money could buy. We all take it for granted that we’ll bear healthy, happy babies and in those early days in that whirl of hospitals, suddenly the last thing I was worried about was whether I’d be able to buy him the latest toys.

At 3 weeks old, First Born had his first surgery. We nearly lost him owing to his heart murmur. But he came through fighting. By the time he was 2 months old, he had cataract removal surgery in both his eyes and contact lenses were fitted. His prescription then was +42 in both his eyes. The eye that they operated on secondly though had developed a scar in the pupil and was not getting enough light stimulation, and on top of having to ensure he had clean contact lenses that often popped out because they were so thick, he then had to have his “good eye”, the one he could see out of, patched so that the weaker eye would get light stimulation. It was horrific. This tiny baby had been given sight and then had to have it covered with a patch to give his weak eye a fighting chance. On top of all of this, he had to contend with his body-worn hearing aids as well. Twice a day, sometimes more if his lenses fell out, we would have to wrap him up in a blanket really tightly and force his eyes open to put in or take out his lenses. He suffered numerous eye infections, trauma from being wrapped and what I call nothing less than “abused” in the process, and still the appointments rolled in. I’m not sure he ever had a stretch of a week of just normal in that first couple of years. We always had to be in some waiting room for hours somewhere.

The thing is though, so many people felt so sorry for me. People from this outside world that is. In there in the hospitals. That’s a whole different world. I was also introduced to many other different types of mother toddler groups through the hospital and through my Health Visitor. When people said they felt sorry for us, I did not. Behind those walls in the hospitals I met other people. We were lucky compared to them. My baby boy may have been deaf and had some serious sight issues but he was alive and well and at home. I met so many people who were, in fact, confined within those walls because their child was terminally ill or so ill they did not even know when they would be able to bring them home. I met people at groups whose beautiful children were dying slowly though diseases that were going to rob them of a chance of even seeing adolescence. So how on earth could I feel sorry for us? We were blessed. We had life. I didn’t grieve, I was in a better place than them.

Ignorance can be bliss however. It was probably a mistake not to grieve and take it on the chin. Being my first baby, what I had at home was normal for us. We had our own way of communicating and babies don’t talk, so First Born was making all the right noises and I was oblivious to, or had hidden away, the fact that he couldn’t hear me. There was so much else to deal with, the contact lenses, cleaning them, the patches, the physiotherapy and occupational therapy, all the other ways of stimulating him with lights and textures etc. As long as he was making those noises, then I was able to forget about the deafness.

My mother had started taking him to a mother toddler group run by our local deaf centre whilst I was at university. He had been going with her for a few months and was toddling by this stage. If I recall correctly, he would have been about two. She called me and told me of the Christmas party and what time to bring him there and meet her. I went up there and remember clearly walking through the double doors. I expected tinsel and decorations and a Santa Claus and chattering and music. Only, there was no sound. It was a world I’d never seen. I was horrified. I didn’t know if I could cope with this. Just when I thought I’d got to grips with the contact lenses and the patching, a curve ball had been thrown at me.

I was the parent, I was supposed to be bringing my son to this gathering when all of a sudden I realised that I wasn’t bringing him. He was bringing me. He knew everyone. He was in his comfort zone. He ran in and SIGNED at someone and they were all signing back at him. Adults came up to me and were signing furiously at me and I didn’t know what to do. He may have been in his comfort zone but me…. I was completely out of my depth and I looked at my little boy and for the first time in that two years, I realised the reality of his deafness head on.

I went home that evening and I cried. I finally, for the first time, cried for his loss. I was drastically upset but I never told anyone. How could I now after all this time suddenly say it was a problem. Quickly over the coming months as I observed First Born integrating into the deaf world I realised something though. This was his comfort zone.This was his world. He was happy here and the words of a woman form the Department of Sensory Needs who came to see him when he was just a few days old rang though my head.

She appeared on my door step unannounced and said, “I am here to see him”. (Like Jesus).  She barged her way into his room  when I told her he was asleep and she stood there looking at him… Honestly… it was like a little Messiah was born when he came into the world. I had to quickly ask her to leave though. She stood there and then turned to me, looked me right in the eye and she said, “He’s not yours you know. You’re just borrowing him. He belongs to the deaf world”.

WHAT? WHAT? What was this woman telling me about my days-old baby? What on earth did she mean he wasn’t mine? Of course he was bloody well mine. I felt so threatened. Like she was going to run away with him and give him to the deaf. I think subconsciously this may have even been why I blocked out his deafness in those early days. In retrospect, as insensitive as she was about saying this, I realised, for the first time at that Christmas party at the local deaf centre, that he did belong to them. Over the years it has become clearer and clearer to me that there is a divide between the deaf and hearing world and though we are all of one family, my son and the rest of my family are of different worlds.

Hence why of course, I gulped a bit when he brought up Cochlear Implants with me and I had to check if he wanted one. We had the choice of letting him have one when he was two and we declined on his behalf. It has always haunted me that he might say we made the wrong choice for him. So last night I was relieved when he said that he was, “impressed with everything as now that society acknowledge of us deaf people, giving us a support all we needs”.

This is the video he brought to show me over breakfast this morning. It impressed me even more. It does remind me though, that the collision between the deaf and hearing world is almost non existent to me now after all these years. To those who have no need to be around the deaf regularly, there is a huge divide… and for the deaf who live in this hearing world, they feel the divide too… but it’s nice to know that with the help of organisations like SENSE making society more deaf/deafblind/blind aware, less inhibited and more accommodating, that people like my son feel more accepted in this world we live in.

I haven’t touched much on my son’s sight problems in this blog post as it is his less profound loss compared to his hearing. However, he’s considered legally blind. We’re lucky though, he operates at a level that would make most people think that he just wears really thick glasses. There are so many other people out there that have a loss of sight as well and can’t use sign language the way he does and depend on other means of communication like touch. This takes so much more skill to teach and learn, and funding is needed to help people who communicate in this way as well as to help them with the day to day tasks they undertake.

I refer back to the reasons for these recent postings which is to make society more aware of the deafblind like my son and the 100km walk I’ll be doing on May 12/13th to raise money for SENSE, the deafblind charity who have helped my son and others who have much more profound losses than he does.

Please click on my Virgin Money Giving link to pledge even just a few pounds so that I may raise money in order that SENSE may keep helping people like First Born and continue to give, not only them but their families, the support that they need. Organisations like this offer practical, emotional and sometimes even financial support to families who, without them, may not be able to cope or give their child or family member the best help or support they can. They have been an invaluable resource to us, please help them to keep being an invaluable resource to others as well.

To those of you who are following this story, thank you. And a big thank you to those of you who have been pledging money and sending kind words of support and encouragement.

I only walked a few miles today to “ease myself into my training programme” and I’m EXHAUSTED. Your words of encouragement and donations will be what keeps my legs moving when I take off on what I hope will be a warm and sunny morning!

Night night x

As a footnote, I just wanted to add that, as First Born developed his relationship with the deaf world, my wounds of his deafness hitting me healed quickly. I didn’t feel sorry for myself before, I felt sorry for him. In that instant, at that Christmas Party and for a few months afterwards, I did feel sorry for myself. But I stopped feeling sorry for him and for me because, when I looked at him with his deaf peers, I realised that neither he nor any of them felt sorry for themselves and if this little boy who had been thrown a bag of lemons didn’t feel sorry for himself, why should I feel sorry for me? That was not my right! He gave me the strength to carry on.

Also, if you have no idea how the deaf and hearing world can collide and the impact it can have on a family or a deaf person, the whole reason this conversation came up with my son was because we were discussing a TV series which came out recently about a couple of girls switched at birth. One of the girls is deaf and grew up in a deaf friendly environment and is then thrown into a world with no experience of hearing loss. It is very interesting to watch from the perspective of gaining insight into how the two worlds can collide. Have a watch if you can!!

 

These feet were made for walking……The shoes however make no sense at all!!!

OMG! Well look what I went and did! I toyed with the idea of doing this walk which my parents really took the mick out of me for and did all they could to make me feel I couldn’t do it. A couple of times I went to sign up and something or the other happened with one of the kids and I got pulled away. I tried to cajole a few friends into it and just kept getting a big fat no, a guffaw and an inquiry as to my mental status, this just added more fuel to the fire. Finally on Friday I actually sat down and signed myself and my friend up for it despite the fact that all my friends and family that knew I was toying with the idea and thought I was mad.

I quickly created my Virgin Money Giving page and last night sat down to write my blog entry which I posted on Facebook to try to muster up some donations and sponsorship. I have to say. Neighbour Man got in touch almost immediately to inform me that he thought my target was a bit high. I did laugh…. I wasn’t sure whether he meant the target of the amount I was hoping to rustle up at such short notice or the very long distance I was pledging to walk. Both he informed me…. and I have to say…I did agree.

BUT….. there’s always a but isn’t there….. I kind of thought that I wouldn’t get much of a response and that if nothing else it would be one of those things I would do with my girlfriend for a laugh and we would proabably fail dismally but put it all down to experience and something to have a giggle about in the future. You know… over a glass of wine…. “Remember the time we thought we could walk 100km?” kind of conversations and everyone would laugh along with us, at us, whatever… we would just laugh. I kind of knew we would end up being rescued come nightfall…. HOWEVER… yeah… there’s always a however too….. something happened!

ALL OF YOU happened! I was amazed by how readership and shares of my blog shot up! I have been receiving private messages, sponsorship, words of encouragement and support. My sister shared my last blog entry on her page via her twitter account and someone is actually sending her nutrition advice for me! OMG! This has enlightened me to the fact that I HAVE TO DO THIS NOW! Not only does it seem like I will be raising rather alot of money. My son has been so touched by this commemoration that I was originally thinking to ATTEMPT and all these people have been so supportive, plus my sister threatened me, I realised that I have no option but to really start taking this super seriously now and even if my girlfriend flakes out at dusk…. I am gonna have to keep walking through the night alone.

Fuelled by all of this, I made a couple of flyers to try to rustle up more sponsorship to take to the local shops. There I bumped into a good and old (of the long variety) friend. He pointed out that it was going to get cold in the night. His friend then enquired about my shoes. What? It’s walking silly…. how hard could this be?! I found myself being lectured as to the trickery and enormity of the task I had undertaken and realised something quite obvious….. my lil feet???? OMG…..

THESE FEET WERE NOT MADE FOR WALKING!

Hell! They were hardly even made for shoes!!!!! Let me explain something to you… my feet….. come rain, snow, sleet or sunshine…. they live in flip flops…..constantly. And I sure as hell can’t walk in them. Well not 100k cross terrain anyways! If they aren’t in flip flops it’s because they are in a pair of seriously uncomfortable heels. And suddenly it occurred to me… the last thing I need is to be getting some blisters and still have 99km to walk! That would not be good. Cause I have now decided….. with all this support…… by hook or by crook…. I am finishing this walk! The organisers give us 28 hours in which to complete it… I will be leaving London at 7am on Saturday the 12th May. By noon on the 13th I should be crossing the finish line. But now with all of you people sponsoring me and sending kind words of support…. I will be finishing that walk even if it takes me a week!

So I need some decent walking shoes.

No biggie….. popped on a bus… I know I know… I should have walked….. and went into town with the girls to kit myself out with some decent all terrain walking shoes. Now I know alot about shoes. Walking shoes…. NO!…. Sadly my knowledge extends to this… THEY ARE SUPER UGLY! But I need a pair. And the organiser’s website said two important things…..

1. Start your training at least 6 months before the event, rest 1 day out of 7 and try to walk a full 7 hours on one of the days.

2. Ensure you have comfortable shoes and that they are well worn before the event.

Now clearly I have only two months before the event so I will not be training for 6 months before. Currently my training plan is extensive…. I am walking for miles each day and also at night to get used to that…. however this plan exists only in my head currently but they do say it’s the thought that counts right?

I figure I have to pay serious attention to one of these important factors soon…. and since I have decided that walking is quite natural…. then I must focus on the shoes…. plus I am female and this gives me the perfect excuse to buy a pair of shoes, albeit ugly ones. But seriously… my feet have to get used to having shoes on them for the next two months. So there I am in town, in an outdoors store, checking out the range of ugly brown leather walking shoes. I was so focused on finding an attractive pair. What I failed to notice was the price tag.

HOLY FRICKING CREAM CRACKERS!!!!!

Why were these things so expensive??? No no no no no!!!!!! I do love a pair of shoes but I could not warrant spending £100+ on a pair of shoes I would be all too glad to get rid of after this walk…. cause my darling girls (Middle and Toddler Child) …. if you’re reading this…. you are NOT getting any kind of gesture like this for your 18ths! This is a once in a lifetime thing from me thanks! No no no no no!!! Ran out of there so fast I could have sprinted that 100k there and then!

Nope… we found ourselves down in good old TK Maxx where I found a nice (or ugly as) looking pair of Merrells that must just be about 5 seasons old…. but to be honest… it made no odds to me. Every season of their shoes looks the same to me. Brown, ugly but I am assuming totally practical and I have to say, they did fit like a glove and were super light so we picked them up, some walking socks and came right on home….. I have been wearing them since I got in… though I have been sitting down. I have to say. I feel like the blood to my legs has been cut of just because I am not used to even wearing shoes. But these shoes and that walk… they make sense.

So on a final note…. thanks to all of you who have been donating, spreading the word and sharing my blog posts via twitter and Facebook. Please please please keep sharing. Every pound I get for SENSE fuels me more and if you missed out on why I am doing this…

READ ABOUT IT HERE.

And to sponsor me… please click on the link to give even just a couple of bucks! Tomorrow I have to consider the notion of the clothing, how I am going to fuel myself (this is off the beaten track and I won’t be walking past any food sources) and apparently I will need a headlamp!?!?!? OMG….. scary!

 

Walk a day in my shoes and then tell me it makes SENSE!

In April 1994 I was happily 8 months pregnant with First Born. I was young and oblivious to the trials and tribulations that life could throw at me when suddenly at a routine check up, I was whisked off to the hospital for an emergency scan. The midwife was concerned about the size of my baby and thought hat he should be much bigger at this stage. She did not alert me to her concerns and made it sound all very normal and routine. Being my first baby, I thought this was all very normal.

At the hospital though, this state of oblivion was all very suddenly turned on its head. My first clue was the fact that this scan was already taking three times longer than all my previous scans, then there was the “Excuse me” and the return with another health care professional and talks in whispered voices. They then went away and came back with another and continued speaking in hushed tones. Suddenly the room started spinning as they told me that I was to deliver the baby early the very next morning, I was to return home and gather my belongings and come into the hospital at 6 a.m. the next morning.

I wasn’t ready. I had one more month to go and hadn’t gotten everything I needed yet. I didn’t understand. Neither did they it seemed. All they could tell me was that my baby was “small for dates” and they needed to get him out sooner rather than later.

I returned the following morning with my parents, my sisters in fast pursuit and the induction process began. It was all very fast,  much faster than anyone anticipated. After a quick half an hour delivery, First Born came into the world. Only he was not screaming. He was quite non responsive and had to be taken away and resuscitated. He was so small and so frail and delicate and it was all spinning so very fast. I still could not understand what was so wrong that they had to deliver him early. They didn’t really know either.

Health care professionals were in and out constantly, monitoring him, poking him, prodding him, taking bloods. He was too small and weak to breast feed and much to my dismay, they put him on a bottle by the end of his first night. Something was wrong. I had no experience of newborn but my instinct just told me that something wasn’t right.

The following morning, a pediatrician came to see him and I still don’t know why, how or when I had come to this conclusion, but I said to her “My baby can’t see or hear me”. She laughed at  me and told me I didn’t know what I was talking about. I still had no clue why I had said such a thing or how those words tumbled out of my mouth without thought. That’s the way of my mouth though. Often things fall out without me having thought twice. As offended as I was about her laughing at me, I relaxed in the knowledge that a doctor said he was fine and as a young mother I just had no experience of what was normal.

This was just the beginning though. Soon enough an eye specialist came by and did some checks. He was rushed and at the end of an all day shift and obviously perturbed by the fact that he had been called back in to the maternity ward just when he thought he was heading home. He announced brusquely that my son could not see and left as quickly as he came. It was late into the evening and I was confused. My family were all nearby. One or another of them. That same evening, a specialist pediatrician came to see him, my mother was present. A scan was done through his Fontanelle and he announced that First Born had scarring on his brain.

In asking for more information about what this meant, he told my mother and me that it meant that we should “just take him home and cuddle him, that’s all he would need”. The world stopped spinning again. In those few days, the world was always spinning too fast or had stopped altogether. Nothing was “normal” anymore. My mother and I deduced from the sugar coated way this doctor was trying to put things that my son had brain damage and would never be normal. In fact, that he would be like a vegetable. The question of his hearing was addressed a couple of weeks later and it was confirmed that he was in fact profoundly deaf as well.

That was eighteen years ago. I left the hospital with a very tiny baby having been told that he was deaf, blind and quite probably a vegetable. I was scared, anxious but fortunately not alone. I had a most loving and supportive family around me and I had the added benefit of having slipped into auto pilot. Our days were filled with one hospital appointment after another with various specialists. Sometimes two in one day in different hospitals. By the time First Born was 3 weeks old he was having his first surgery to try to restore his sight.

Over the coming months he had several surgeries on his eyes, contact lenses, patches and fortunately had some sight recovered in one of his eyes. He was fitted with hearing aids. Not the behind the ear types but a body worn aid that looked more like he was using an iPod. It was HUGE on his little body and had grotesque beige curly wires leading to horrible moulds in his ears.

A profound moment for me was walking down the street to the grocery store one day with im in his pram. All snug and sleepy with his hearing aids in. A woman coming towards me peeped in to have a look and the horrified expression that came across her face. She actually doubled back and went around my pram to have another look. She was clearly trying to figure out why I had outfitted my newborn with a music listening device! She never did ask though. She just stared. This changed my approach to all “different” people then. I never stare or look anymore. If I really need to know I walk right up and ask.

This was the beginning of a new chapter in my whole family’s’ lives. First Born was different. We were different and First Born was one of THREE people in the country with his condition. Congenital Rubella Syndrome.  So our days were filled with nosey doctors and junior doctors or students coming to see him all the time. Lots of people from Local Authority departments were coming to see him. It was like I had given birth to Jesus with all of these visitors. However, none of them were really that useful.

My mother was a pillar of support. We could not actually get much practical help from any of them so she organised sign language classes so we could learn to communicate with him and ensured that steps were put into place so that he would get the education he needed. And sometime in his fourth year at his end of term play at school, we all went to see him. I remember I just cried and cried the whole way through. Everyone else was smiling and laughing at this Christmas play. All I could do was cry. There was my boy. It was like nothing was different about him at all. He sure was DIFFERENT to the prognosis I was given in the hospital when he was born though. He was up on a stage, signing furiously and enjoying his part in the play. He was a healthy, walking, signing and intelligent boy! He scored top of his class most times and I just couldn’t help but sit back and think of the early days. It wasn’t bright. Not like the bright spark that was lighting up that stage at that Christmas play!

Over the years he continued to thrive and prosper. He has always been in and out of hospital appointments for his eyes and ears and general check ups however there have never really been any Local Authority (Government) Agencies that have been able to deal with his deafblindness as a package. Very early on in his life we were made aware of a charity called SENSE who specialise in people with deafblindness. They have been a pillar of support and advice from the very start. And we never felt like we were alone.

First Born will be 18 in April. I have been racking my brains about what to get him. Eighteen year old these days don’t want the necklace or souvenir key. Noooo… they want so much more. Knowing my son as I know him, he probably wants a new computer especially built for his online gaming. That should only set me back a thousand pounds or so….. *FAINT* Or maybe he wants an iPad to complement his Mac Book. Or whatever else he wants, I guarantee, it doesn’t fall into the category of meaningful, sentimental or could be considered a keepsake. And it certainly doesn’t fall into the category of affordable either. So as part of his birthday present to him this year, I have decided to commemorate the eighteen years he has walked in his not so easy life with a not so easy task.

First Born has walked all these years, through all the trials that life has thrown at him with dignity, with pride and has taken every challenge head on. As hard as he may have found some of them, he made it look easy. Easier than I know most people would find it if they had their hearing AND sight ripped away from them. I am so very very proud of him. And so very grateful to my family, my friends and to SENSE the deafblind charity for walking this journey with him. But he will be eighteen soon. He will be starting to walk this path of life alone without his family soon and I rest assured knowing that SENSE will always be there for him. They will continue to offer him support and advice throughout his life even after we are all long gone.

So what better way to commemorate his birthday with doing a walk of my own. I have pledged to walk the London to Brighton 100km cross country walk across all terrain and through the night in aid of raising money for SENSE. Please help me to help them and click on the link and donate even just a dollar or a pound. Every little will help me to reach the huge target I have set.

This is a terrifying task for me. Terrifying that I have entered late and have just 55 days to meet the target I have set and also terrifying that I have committed to walking 100km. I can’t even remember when was the last time I walked as much as 2km at a time. I have never been in a marathon and I don’t exercise regularly. I can’t even repeat what my mother told me when  I told her what I was doing….. in a nutshell all my friends and family think I am crazy… but you know what???? If First Born can walk the path that life has carved out for him for the last 18 years and keep doing it with a smile on his face then I can walk a crappy 100km through the night over a 24 hour period of hideous uncomfortableness….. and I pledge to try to do it with a smile on my face too.

CLICK TO SPONSOR ME

If SENSE can offer the support and advice and help to all the deafblind people in the world that need it, and do it with a smile on their faces and with love, compassion and understanding in their heart… then I can do this too. Can you sponsor me to do this so we can keep this charity alive and keep a smile on my son’s face and the faces of many others like him? Click on the Virgin money giving logo to sponsor me.

Many Thanks for reading, for all of you who sponsor me and to my very dear friend for walking this walk with me! Hopefully we will still have legs at the end of it!!!!

Single Mother Stories

xxx