Day 55: Sunday Confessions

Just when you think you knew it all about living with a person who is blind then think again...I know nothing Sansei! 

Picture of The blindmans wife and the Blindman at a recent wedding

Yesterday taking my daughter to a cake decorating class one of the instructors and I were talking about different techniques of applying icing...riveting I know! (Insert winkie face here) I offered to show her some of the creations I had made and proceeded to tell her this blog address so she could see the pics I posted yesterday of the cakes I had made in the past. She had a little giggle when I told her the web address was theblindmanswife. 

Explaining that it wasn't satirical that I actually was a Blind mans wife she looked at me and said "Wow that's amazing...I am a special needs teacher as my second job and I have worked with blind girl in the past". The lady continued to admire my cakes (blush moment) and then with a pause she said something that I will never ever forget! 

"Do you want to know the one thing I learnt about blindness while I was teaching this little girl?" My thoughts went to a million different learning experience she may have had...cane training...Braille...how to successfully guide a blind person through a crowd...how to use a magnifying glass without causing RSI...how to use screen-reading technology....how a blind person pours a drink...the cure for Retinitus Pigmentosa!!! Nope none of the above.

Looking at her I beckon for her to tell me her knowledge breakthrough. She continued with this next sentence that had me stunned...and feeling a little bit stupid! "Isn't it weird that mostly everyone calls people with some degree of blindness Visually Impaired?"  My response was, I am sure, a little amusing to her because of my black and white demeanour about her question/statement. "Well that's what everyone who has impaired vision is called right?"

Taking a sighing breath she said "Just pause and think about what the English language literal meaning is of describing someone as Visually Impaired. It literally means to you that person looks impaired...perhaps that they look like their face is melted" pulling at her checks she uses her hands to stretch down her face making it somewhat look unattractive. Then with a smile she says "The correct term to use to describe a person with limited sight is Vision Impaired!" Because of course I should have known this for TWENTY FIVE FLIPPING YEARS!!! 

My vision Impaired Man very attractive in his unattractive but fun Sherpas hat 

It's almost taboo in the community of the Vision Impaired...like a person giving a description of a person with colour...I don't think you are supposed to see a persons colour anymore...or describing a persons gender...is that even appropriate these days...I am so confused I just don't know...but this one fact about the English language I should have been all over....how could I have been so ignorant? Well today I have been schooled...by a special needs teacher none-the-less. 

Just in case anyone thought any different because of my uneducated descriptions Deano is Number 1 to me!

From now on my descriptions will be correct and bummer I will have to re-read all of my blog posts and edit the whole bloody lot. (Oops probs just offended someone else with that inappropriate swear word) I will even have to go so far as to now issue a public apology to my ever so attractive husband...whom all these years must have developed s complex because he can't see his own reflection and I have been describing him as the "elephant man" to so many people! Oh and what about his siblings who are also Vision Impaired...I will have to apologise to them for being such a terrible relative and offending them for many many many years. What about everyone else in the Vision Impaired community...oh those poor souls...I am awful! 

So it's with true and utter remorse that I wish to ask for forgiveness to the Vision Impaired community as a whole...you are not unattractive to me... To me you don't look impaired in any way shape or form and I truly and utterly feel ashamed in my lack of command over the English language. I could blame it on my middle class white Australian Sydney  south side upbringing but I am sure in doing so I would offend all of my friends who were Greek, Italian, Croatian, Yugoslavian (we used to call them Wogs back in the day and they called themselves this too...I am sure another taboo today) because who says we were white....some of use pale skinned people have red, brown or even black hair.....we aren't supposed to see colour remember! So I guess I have no one to blame but myself... From now on I will consider myself corrected! My husband is Vision Impaired not Visually Impaired as most Australians would say (or is that just me!) and I consider him to be the most attractive man in the universe regardless of what I have been uneducatedly (if that is even a word!) calling him for so long.

Day 54: I Love You More Than Chocolate!

"I love you more than chocolate" was something I used to say to my husband when we were first married and still do from time to time ..and as any woman knows that is a massive statement to make when it's a few days before the monthlies are due and all that seems to go in the trolley is chocolate of any type of variety...chocolate cereal, chocolate ice cream, chocolate waffles, chocolate cake, chocolate cherries, chocolate milk, chocolate cream eggs! If I could find chocolate in any one of the food groups I would have it go through the checkout before even registering it was soon to be that time of the month...I know this is not just happening to me ladies...or am I just the crazy one here! 

Our wedding day not the best pic of everyone but I just love the way it captures Deano looking at me with a huge smile.

Now that I am a little closer to the second big "M" word that apparently  only happens to women in western countries (as told to me by a women's health nurse that women in Asia don't even have a word for "it" as they rarely go through menopause due to their high intake of soy) so that's something for me to look forward to...letting go of my chocolate buying habit and embracing one that includes the purchasing of hand held fans, moistened towelettes and ice pack thingies to wrap around my neck to prevent me from the overheating of my bodily functions as I crack into the day and night sweats...I think the chocolate has to stay...(probably why my mum caries a block or two in her bag at any time) Beside all of that my husband has loved me through it all and I still love him more than chocolate...even if I have to share it with him...and he can't see how many pieces I have eaten and that's another reason why I love him!

Today Is a day of deep reflection, one of those days where a woman hates to admit that she is another year older...and yet this year is a little different...it's been a year of massive consideration...a year of letting go of control of my own business in order to help my Blindman with his. It's been a year where I have discovered a part of me that never really existed before...the feminine part in all its problematics chocolate loving glory....the part that just says no mater what happens everything will be okay...and it's been a year where I have learnt to see the good in every situation even the ones that suck...because without embracing the suck I won't recognise the great things that can and ultimately do come out of difficulty. 

This blog has given me an opportunity to take a closer look at why things have happened to us as a couple..just like a plain block of Cadbury chocolate compared to a block with a gooey rich centre, life would just be dull without the sticky sweetness that's found in the centre of life...the little bit of drama...the funny mishap and the excitement of new discoveries. I have been married for many more years than I have been single and each day with Deano it has its challenges. I see what he doesn't and he sees me...the real me...more than anyone else has...and that's why I don't mind sharing my Mars Bars with him because I love him more than chocolate. 

Ps he gave me chocolate yesterday a day earlier than my birthday and then told me this morning "I gave you chocolate yesterday"...then hesitated when he heard my groan and quickly said "but I will buy you some more today" that's because he loves me too more than chocolate... 

Note to self: I think we will become diabetics together! Lol! Nope I can't have us both go blind...better tell him to lay off buying me more chocolate, perhaps I could settle for a chocolate birthday cake made in the shape of a handheld fan to help me celebrate my coming of age, I better get in the kitchen get out that Woman's Weekly Birthday Cake Edition and start whipping up a chocolate Fan cake storm! 

                             check out some of my cake creations below                    

Birthday Princess Dolly Varden Cake

Birthday Princess Fiona Cake

Hey Diddle Diddle The Cat Birthday cake

Humpty Dumpty Birthday Cake

Barbie Castle Cake

Day 53: More Jack Sparrow than Mickey Mouse

A friend of mine called me out of the blue and asked if we would like to catch up with himself and his lovely wife for dinner on Saturday. In the next breathe he tells me they are off to the states to follow a life long dream of his wife's to go to Disney Land. It sounds so very exciting and reminded me of the time I traveled to Disney Land with My Blindman and 2 year old firstborn in tow whilst I was 6 months pregnant.

After Deano and I had bought our very first home it was a dream to travel and so we decided to sell the family car to help fund the trip and hit the road before having two little ankle biters to care for. With much anticipation and not travelling overseas as a couple before it was a highly nerve wracking experience...I never anticipated it being so stressful. At this stage Deano had not begun using the cane so there was no indication to other travellers that he had a vision impairment. On top of trying to guide him in the right direction without him tripping over people, carrying our suit cases and chasing a toddler it was all quite a juggling act. Oh and don't forget I had a belly like a whale so bending over to pick up any dropped toys, hand luggage or baby items was not exactly a breeze. 

After being trapped like sardines in a flight that was delayed on the Tarmac for an extra 3 hours our journey to LAX took close to 17 hours. No leg room...or belly room for that matter, we he let the airline know we had a toddler, they only catered for a baby giving her baby food instead...don't they know that feeding a fussy toddler is like s fate worst than death if the food is custard carrots and mushy peas out of a jar, and not cheese sticks and familiar real food...ahhhh..and not getting more than 2 hours sleep you can guess what state of mind this pregnant whale was in when she arrived with her Blindman and by this time a terror of a toddler at the gates of the LAX international airport. I was beside myself. I was an over tired, over emotional, and over hormonal bag of baby carrying, Blindman guiding, toddler chasing waste matter. Actually to say I was wasted was a huge understatement! What happened this was meant to be a trip of a lifetime? I was literally shattered. 

Standing in the airport waiting at baggage claim we watched the luggage go around and around...with LAX being one of the largest and busiest airports in the world there was so much luggage...I am kinda wishing I could recognise out bags! A kindly friend had loaned us some luggage to use, never travelling before I made a massive rookie error when packing...I didn't add any identifying markings on the bags to make it easier for me to recognise them as they travelled around the conveyer belt with what seemed like 6000 other pieces of luggage...yes a pink hair ribbon would have saved my life right now. With Deano's eyes making him redundant to the bag search I watched the luggage rotate for around for 2 hours (may be not that long but it certainly felt like it) not identifying one single piece of our belongings. Panic being my next hormonal reaction to my situation. Foreign country, no clothing, limited funds to replace lost goods and extremely tired I turned to my husband with tears in my eyes and put my head on his shoulder a cried a little from pure exhaustion and a little for the unknown. 

Have you ever had a feeling or some might call it a prompting, like a thought out of nowhere just when you think all is lost...when you are all out of answers...well this was such a time. I got this thought telling me to walk about ten metres around to the back of the carousel. At this point there were three bags no longer on the conveyer belt just left right there like they had been abandoned by their owners...these days people would have the bomb squad out inspecting them but this was 19 years ago when abandons bags and terrorism wasn't an airport related fear!

The moment we reached Hollywood

Now just nineteen hours into our journey we were ready to take on our USA adventure...yep no longer caring about Disney Land all I longed for was a place to rest my spinning head, have warm shower and collapse for the night...or the day...or whatever time it was for how ever long it took for us to feel normal again...

Up on the deck breeze blowing in my hair, much happier way to holiday

Can I say I no longer get the exited to say we are flying overseas...in fact the only overseas holiday we have taken since then have been literally overseas...cruising has been the choice of this Blindmans family ever since. Where the luggage is delivered to your door, the Blindmans wife doesn't have to drive on the wrong side of the road...or in fact drive at all for 10 days..or make meals...or do the washing...or the cleaning...or entertain the children...STUFF DISNEY LAND!!! This is the way to holiday where the rollercoaster is built into the fair when the seas are high and  when I know I don't have to search too far to find a place to rest my weary head, with a choice of 1000 deck chairs and my own bed a stroll down the corridor I would have it any other way.

Ready to Party with my Blindman sailing the high seas

Cruise night fun with two of our girls

Day 52: Do you Stand or Do you Sit?

I want to share something with you that I know has been and still is a very embarrassing situation that happened to My Blindman. So just to let you know I have his permission to share because it was such a hideous situation that I am sure you will agree, if it were you dealing with it, you may never want anyone else to know, but alas it is a reality for people with RP, well men anyway, with this disease and something they need to consider that a sighted person (perhaps only if you were blind drunk) has probably never had to think about.

Do you stand or do you sit?

Let me come back to that question after I paint you a descriptive picture of the situation. Driving in the city yesterday Deano asks me what we are near to get his bearings  and with hesitation I told him the landmark,Qscan. I say this with anticipation of the anxiety it could cause in a man that totally lost it in that very building a few years earlier. With nervous laughter he leans back in his passenger seat and grabs at his legs and adds some commentary..."Hey girls that's where Dad famously..." I will stop there and paint you another scene...the actual scene

Deano was having acute stomach pain and took himself off to the Doctor who ordered an ultrasound to be taken. You see it's not just the ladies that get ultrasounds that consist of drinking 1 litre of water and are asked to hold onto it until after the procedure. With me being at work on this day Deano assisted by Daughter number three caught the bus to the Qscan building. In the waiting room  the duo patiently sat waiting for Dads turn but the scanning technician were running s little late. Ladies, now you know how annoying this can be, especially if you are 6 month pregnant and told to drink a litre and hold it for your ultrasonic enjoyment...NOT!
Finally it his turn to have the cold gel added to his abdomen only to be poked and prodded by an alien looking instrument in order to capture a glimpse of the effected area. As the procedure went on Deano tells me he felt like his kidneys were about to burst but being in true Aussie bloke form he never complained, just sucked it up (pun totally intended) and went with the flow!!!...insert winkie face emoji here!

 On completion Deano is directed to the bathroom which is set right between two of the scanning rooms. Architecturally designed for this very purpose...to relieve the ailments of those who are subjected to  ultrasound water torture treatment.  In a complete frenzy he whips it out and relives his sinking kidneys of the drowning water that was backing up in his pipes. Completely emptying the entire litre and any other fluid that was in his system before he forced in the the excess water prior to the scan.  Deano felt the satisfaction of a job well done and zipped up his pants ready to flush and exit the room. As he went to push on the flusher he could not find the button...in fact the toilet was not there at all...it was to the left of where he was standing...not where he had just emptied his funnel. Oops! Splashing his way out the door he tells the staff member "I think I  peed on the floor" or something of this sort...he didn't really remember what he said being highly embarrassed he just wanted out of there ASAP! The tech takes a few paper towels in with her to wipe up the dribbles she thinks are on the floor only to find that Noah had left the remainder of the earths flood within the walls of the Qsan toilet amenities. Poor woman...Poor Dean!!!

 So I will pose my question again...Do you stand or do you sit? From this point on Deano has decided it sit!

BTW....those disabled toilets are not just for those in wheelchairs...they are used by those who need direction from their spouse or someone who needs to find the toilet without everyone else in the room looking at them, while they use their hands to feel their way to the cold porcelain bowl in a room so Noah never has to build an arc again!

Day 51: Finding Joy in the Journey

When Dean worked at the Waste water plant he noticed that his eyes were not managing to see as they once did. Knowing that this could possibly be putting the men's lives that he managed in some danger (those airation tanks at the plant make the turds sink not float and as such if one was to fall in drowning in poop is a very possible outcome and a gruesome way to die.)

It was the first time I noticed that My Blindman decided he needed to make a decision based on his diminishing eye sight. In the past Deano never let anything lick his spirits but just this one time he knew that his sight was putting other people at risk and knowing this was not okay he handed in his notice ...even if it meant rearranging our whole lives and uprooting the family from the country town and go back to university on a mission to retrain.

This would be just house move in a series of 19 house moves over the period of 25 years, mostly made so we could redesign our lives to fit in with the changes happening to Deano's eyes and career choices.  Whilst back at university with the announcement of a significant first home buyers grant most rental leases were only allowing a three month stay due to the requirements of the newly acquired owner to qualify for the grant must live at the property themselves for a year before returning it to a rental status. Being that this was a study faze in our lives we were unable to purchase a home in this time and were forced to move home many times in a short window of duration to keep a roof over our heads. In this time Deano became an expert furniture removalist. With enlisted the help of family and friends we made our moves form one house to another. With one person guiding at the front My Blindman would follow their lead and trail with the tail end. We had many different friends we would call on to help us move and so each time our pals were amazed with the agility and strength of Deano saying nothing stops this guy.

Daughter number one climbing our backyard trees

The girls hitching a ride at a friends property in Northern NSW

In hoping there are not too many more moves for the rest of our lives, I reflect on the outcomes of each move and find that it wasn't that bad at all. It helped me clear out sooo much junk we had acquired and made life more interesting discovering new kitchens to use, new neighbourhoods to walk, new backyard trees for the girls to climb, new pets to take care of,(one house was on a sheep farm) meeting new neighbours (one of which we loved so much we named our fourth child after her)  Each time we moved it was a new adventure. 

Friends in Northern NSW

Life Long friendships have been made through us moving house

Perhaps the biggest obstacle with moving when you are blind is rediscovering the layout of the new property and committing that to memory. Having to remember where and how many overhead cupboard doors there are in the kitchen for example is important to a blind man. These are usually just at his forehead height so if left open Deano would often walk away with a head wound that would make him look like he has been bashed at a bar the night before. Or having to remember where he had placed the lounge or dining table setting so he did not fall over them when moving about the place. 

Daughter number 3 and her cousin from Northern NSW

Our time here on earth is only short and while some may focus on the trials in life. Having to rearrange life to suit an ever changing circumstance like going  blind might not be considered exciting for most I have chosen to take this journey with my husband...probably not really understanding the full commitment I was making when I said yes to marrying him at the tender age of 18. We have decided to find happiness wherever life takes us. 

Friends from Tamworth

Perhaps when we are old and grey we can look back at all the changes we have made, the people we have met, the places we have stayed, and feel satisfied that we enjoyed and embraced each opportunity and feel at least despite the odds we gave life a go and found joy in the journey and feel gratitude for the life we have been blessed with. 

Friends from Brisbane

Friends from The Redlands and a couple ring ins from Melbourne

Day 50: Driving Blind

There once was a movie I saw of a blind photographer played by the actor Hugo Weaving. And his mate played by  Russel Crow The movie was called Proof, made In 1991 it has the best scene yet that I have ever witnessed of a blind man trying to drive a car. It's not that he wanted to drive but he just ended up driving 
Warning this clip is hillarious and may have you wetting your pants with laughter but there is some nudity and a little political incorrectness!

Driving has always been something My Blindman dreamed about from the time his Dad let him use the ride on mower when he was a kid. He often says to me..."In my next life if God says that I can go somewhere just by thinking about it...I'm gonna take the long way around and take you on the back of my Harley Davidson or you can hold on tight in the passenger seat in my V8 super car!" 

Being one of 6 children Deano's parents had the quintessential Aussie 1970's family  people mover...the old Valient Station Wagon in metallic bronze with a white roof.  Only having 6 seats My Blindmans seating position was set in the middle at the bench in the front. The headlight clicker switch was on the floor in this model car so Deano's Father would let him change the headlights from high beam to low beam and back again on family outings. My Blindman recalls how important this made him feel and how all the other siblings wanted to sit in the front middle seat but his Dad saved this position for him and wouldn't let any of the others sit in little Deano's seat. The only time Deano would swap this seat for someone else was on long hall family car trips when it was his turn to sleep in the back boot area of the wagon....(before judging remember people, this was the 70's and although there were seat belts there certainly was no child car seat restraints. It was almost optional to buckle up! 

Living in the country it was a habit for Deano's Dad to leave the keys of his ute in the ignition parked out the front of the house, a huge temptation to would be thieves or one wanna be driving vision impaired son. Deano tells me his younger sister found herself without a lift to a friends house a few blocks away in an adjoining street  and with night already well and truly on its way, too dark for a young girl to be walking the streets even in a country town. Deano being the big softy, he is, did what he had always been dreaming of. The temptation was too great. He jumped in the drivers seat and offered his sister a ride. 

How did he do it still puzzles me,(And In writing this blog I in no way condone his daredevil actions at all) this Evel Knieval want-to-be says "I knew how many light posts there were in each street and each intersection had a larger light so I could tell where I was on the journey" These days he is not so proud of the stupidity of his teenage decision to break the law but can't help himself and loves to impress his mates with this tale of his death defying stunt. It's a man thing I suppose! 

These days Deano has to settle for being in the passengers seat. He loves having the Dog in the back seat of the car as it his excuse to put the windows down and along with the dog lean his head out the window and feel the breeze run through his hair. If there is ever a cure for his blindness heaven help me...I'll have to learn to be his pillion passenger and be known as his bikie mole! Until then enjoy this clip of a middle aged couple, the husband is blind and the woman takes him to the Harley shop to purchase some shiny wheels....only to tow him on it sitting on the back of a trailer pulled behind the family Volvo!

Day 49: Mighty Mouse is in the House

What the general public know about Retinitus Pigmentosa we have found is really limited. It is a eye condition where pigmentation blocks the retina over a course of time. When and how long a person will keep their sight is unknown, a little like a ticking time bomb without a countdown clock. For My Blindman his sight was effected right from the beginning of his life. However he did have some vision as a little child and can remember watching cartoons on a  Saturday morning like any other Aussie kid in the 70's. One of his favourites was Mighty Mouse. He tells me he would prop a little wooden chair up just left of the TV set, about 1 foot away so he was up close and personal with the moving pixels before his face. 

As Dean got older his eye sight has slowly became worse with the pigments growing and blocking his vision. Deano still has residual vision in his left eye. Many a time sitting in the passenger seat in the car he can warn me of a car approaching in the left lane when I want to merge in that direction. He can somehow see the approaching lights without even turning his head in the direction of the vehicle beside us.

It has always amazed me that this little bit of vision is still in tact and believe it or not  it has has been life saving for one of our daughters when she was a toddler. Being a cash strapped young couple we had second hand and antique furniture in the house we were restoring. The high chair we bought was lovingly sanded back  by Deano with anticipation of the children who would be seated within it during meal times. It took a few weeks of preparation but it looked amazing once it was done. Being new parents it never crossed out mind to install a seat belt onto the high chair. 

 Having our oldest daughter use the chair without any hiccups it was a natural progression for us to have our second daughter sit in it during meal time. As I was feeding her the Australian favourite breakfast cereal, mushy wheetbix, I leaned over to wipe up the slop she had spat out on the floor. As my head was low to the ground I failed to notice the toddler had stood up I the chair. Deano was sitting on the opposite side of the chair assisting daughter number one with her meal when  his residual sight in his left eye noticed a child toppling out of the high chair in his direction. Like a black and white Mighty Mouse cartoon Deano's reaction to the situation was instantaneous. In a sudden moment without moving his head in the direction of the tumbling toddler he reached out with his left arm and caught the falling child by her little chubby leg with his strong hand just before her melon shaped head hit the timber floor boards. 

Yes I often wonder how our children have made it through to teenage years and young adult hood without too much physical damage. It's been a miracle and I have seen many over the years that have kept them in tact. I feel blessed that we have a God in all his mercy that has blessed us with a vision of the future even if this vision is limited it has proven to still be a blessing in our lives. We love and adore all our girls from the oldest right through to the youngest and with every trial weather that is sight related or not we know our Heavenly Father has sent them to us to take care of. We have always done the best we can and that is all He asks. Deano having reduced eye sight has just been another blessing that has made our family unique and that's a blessing in itself. 

PS As loving parents we did add a strap to that high chair. It was the only strap we ever gave our children. One of Deano's leather belts worked a treat to hold them securely and we never had a child topple out of the chair again. 

Child number 2 has her first birthday standing in the high chair