Welcome to ‘Louis Sees’
We are Catherine and Tim, the very proud parents of Louis.
We wanted to take the time and give you a little background into our 2013 to help you understand the gorgeous gift that you have given to Louis and the impact it has had.
Three of our five children have a genetic disease called RetinitisPigmentosa, which slowly (hopefully) and sometimes quickly (mutter) takes peripheral and then central vision.
At this time there is no cure, so we tend to try and ignore it and get on with life.
We like to think that we have foot in each camp - on one side providing a carefree and joyful childhood, while on the other, trying to future proof them for when they are living life and kicking butt differently.
It seemed a cunning plan. Until March 2013.
In a routine visit to our very talented, trusted and delightful specialist, Diane Sharp, tests showed that Louis had swelling of the retina in both eyes.
As you can imagine, with children whose peripheral vision is being eaten by the disease, you are never keen to hear that something is attacking the central vision also.
Cue: Panic– Catherine
We immediately started on eye drops to control the swelling. Only when the vomiting, rash and swelling got really bad did the local doctoracknowledge that it could be an allergic reaction to the drops. Sadly, he may have received the sharper side of my tongue. I apologize... not really. (‘Trusting Mothers Intuition' should be in the Medical School Master program).
Note To Self: ATTITUDE DETERMINES ALTITUDE
When you don't like something it is best to keep moving-you might like to read that as denial and escapism... totally over to you. Nevertheless, get moving we did.
It was time to make this boy fearless!
For a family who has had this disease at the center of their universe for a very long time we have been given precious little advice.
Childhood progressive vision loss is rare so who is going to sermonize?
The two pieces of advice that we have valued the most are
1. Travel widely and focus on height, colours and texture.
Our friend, Don McKenzie, told us his parents travelled with him and showed him the Eiffel Tower. He has since used this memory of its height to reference any new building. When his daughter said she was wearing a red dress, he would ask if it was the colour of a ripe Tuscan tomato, or the red of a strawberry.
We know we have to saturate Louis with these images, combining sight, sound, taste and touch to embed them.
2. Have a profession.
Self-esteem and depression are the black spiders in vision loss. It is important for us all to have meaning in our life. To have a qualification means you are an accountant who is blind, or a physio who is blind rather being known as the man who is blind.
We are determined our boys won't be defined by this, so their education is at the forefront of our attention...and probably our anxiety.
From March we embarked on a specialist feast:
Ophthalmologist – Genealogist – Optometrist-Low Vision Specialist – BLENNZ-School
There were a few constants:
1. We never enjoyed them...well not the process, we enjoyed the people, they are special and incredibly talented.
2. They were always expensive
3. And they never gave us good news
Nevertheless, we were moving and feeling quietly pleased with ourselves.
New reading glasses, contacts, magnifiers, Oakley sport sunglasses, basketball branded sun caps.
You probably should accept it now - Louis came out of the womb wearing Nike.
Note to Self: PRIDE COMES BEFORE THE FALL
So why, by August, did we have a crying, angry, exhausted 12 year old on our hands? We had done everything?! Well?!
At the beginning of the year, he was a pig in mud, loving his new school, making representative basketball teams, high performance institute teams for cricket and water polo and getting awesome reports.
What's the problem?
We decided to go for the "Don't like this one bit, lets ignore it" approach.
Yes, ignoring things I don't like does work for me. I have a gift. Amazing selective hearing. Ask Tim.
I swear we kept putting it down to exhaustion from school, huge sport commitments, probably bad nutrition.
But, after three months, when I had my gorgeous 12 year old begging me to read his favorite new series, Rangers Apprentice, to him, again. And being prepared to sit waiting for me to finish something important…like brushing my hair, the horrible realisation came that he really couldn't see the print that he was desperate to read and no amount of me saying (with a pointed finger) “Put your glasses on", "turn on the light", "lift the book", "flare your left nostril", was going to work. I even sound like a ‘bag’ in print.
So...back to the specialist we go.
I really do wish that they would say something I like every now and then!
In a few short months, Louis had lost so much of his sight, that all the tools and resources gathered were now redundant.
Cue: Vicious Focus + Whimper - Catherine
Practical Action + Heart break - Tim
We realised that Louis's vision was deteriorating in a way and at a pace, that neither of us was prepared for.
WARNING: The content to follow is not to be trusted to work. All you should know is that we feel inadequate with the quality of our ideas, and the way we are implementing them so far, but we are a family who is trying really hard. We were hoping that someone else would have some better ideas...you can imagine our delight when we realised you did!!
We sat Louis down and asked him
"What do you think it would be really cool to see and do?"
You will love the response.
"I would love to see all the best beaches, waterfalls, and sunsets" (Applause for the parents)
"I want to play more sport please" (What! And you expect to fit more in, how?)
"No Louis", we said
"Think Bigger. If you could go anywhere and see anything in the world, what would it be? What would be your best holiday in the world?”
"I like the holidays we have" says Louis "I don't want to go anywhere, I like it here with my friends"
It is like his father is speaking through him.
It took all of my control not to hit him over the head with the itinerary.
Mind you, he did have a point. We do have great holidays. New Zealand is one of the most naturally beautiful countries in the world and we decided early on that we wanted the kids to experience it. So adventures of the Central Otago Rail trail, Routeburn Track, Able Tasman Tramp, Coromandel, Doubtless Bay, skiing, biking and adventure trails have filled their world. This is an easy country to be spoilt in.
How to make this kid think bigger?!!
The 12 year old Louis verses the 25 year old Louis. When he hears people talking in 10 years what would he like to recognise, share, experience? What are his friends going to see?
In this incredibly beautiful world we live in what would be the ultimate...
And he said...
"Watching a basketball game in a huge stadium in America"
Really!! That’s first pick!!?
Well, I'm sorry but that is not going to happen, Young Padawon.
What you really meant to have said was history, languages, art, architecture, food and different cultures.
And that, of course, is Europe. We could do eight countries in ten days.
It would have worked if Tim and Louis weren't in fetal position.
Obviously I had to start educating - read brainwashing them.
We bought out the books and started researching.
Then, as a family, we made our 'Cool Things To See' list.
Note, the basketball game is still at the top. Tough customer!
We watched amazing films and documentaries on the nature and history channels. “Supersize Earth" was a favorite.
The darling Dani at Porters Paints made us test pots of every colour imaginable. Think in the 100's.
We sorted them into the colours Louis loves best...lots of blue as it turns out. Then he had to choose the top colour from each block. Hard to do but at least now we know what colour pink to put him in at his wedding.
Now every time we see something of interest we try and match the colour pot to it:
The green of grass
The green of an apple
The green of a feather on a dead finch
The green of a boggie
You get the idea.
We have started to make 3D puzzles of iconic buildings. We are hoping that seeing the Eiffel Tower at 230 meters and comparing it with the Sky Tower at 328 meters and the Big Ben at 90 meters will help cement height and proportions for him. This has backfired somewhat as every model is made to 60cm so the Big Ben will never have SMS (small man syndrome). Louis on the other hand will forever see the world as flat and his mother as 45...silver linings!
Gotta love those decor magazines!
They are making our life so much easier. A big, grateful shout out to all editors, designers, photographers and stylists for the fixture pages on design, textures and colour on one page.
Louis can see Aztec prints, seventies swirls, the many versions of monochrome, art deco, French renaissance, classicism, modernism and kiwiism.
We are watching decorating shows. Think TV, couch, chocolate, Louis = Mum heaven. Difficulty getting the rest of the family to buy into this one. It merely acts as payback for all the basketball, cricket, hockey and multisport being watched if the truth be told.
We have decided to go with 'as much as we can, for as long as we can'
This is harder than it sounds. Mainly because of the rock at the pit of Ma And Pa's stomach.
The reality is that Louis is loving it, apart from smashing into a few walls and numerous balls in the head, and we have to get over ourselves...faster.
We have being trying some gentle encouragement into sports like rowing (Brother Terence is a diamond and a fabulous co-conspirator, he is also teaching Louis some targeted language that will come in handy when Louis wants people to get out of his way in the future) and Judo.
We are having limited success at the moment because this kid is a ball freak. So we will have to watch and wait.
One of our favorite moments in the last few years was Louis watching the Para Olympics and saying
"I'm going to play that ... and that... and that...."
For as long as we can remember Louis has had a cool dream that he will go to the States and win a basketball scholarship. Because words like 6ft 9in aren't in his vocabulary yet - refer height section -it seemed a great goal and we encouraged it. Great sport is based on goal setting, determination and hard work. We know these attributes will apply to Louis now, more than ever, but it is hard letting go a long held passion... segue with me. I think we should back off dance mums and soccer dads. There is nothing like spectator sport.
Louis has always been able to focus and has a 3rd eye (ironically!) for detail and expression. We are keen to give him an artistic outlet but are low on ideas. Sculpture seems the obvious. If you could see the sour look on his face when I have approached it. Pure Picasso. Oddly for a kid who is now struggling to see print he can still execute lovely artwork, A4 size. For now we are doing lots of art galleries, art shops and world art. Criticizing like only the most ignorant can.
Flash forward. At the beginning of this week, Louis's class was given a book to read. We frantically tried to find it on Kindle,iBooks etc. but had no success. By the third day Louis was devastated because he was falling behind. Then Tim had a flash and found a free app magnifier that meant that Louis could run his iPad over the page enlarging it enough to see. It is moments like this that parents like us, thank God for Google, Steve Job, the designers and app creators who gave our son the tools to engage and achieve.
We got Louis an iPad at the beginning of term 4 and it transformed his classroom life. He now photographs things off the board, textbooks and worksheets and can enlarge them independently. It has taken all the stress out of it for him. He still has to work twice as hard as others to keep up, and tires easily, but at least growing independence, problem solving, great communication and excellent IT skills are on the cards.
Changes are happening so quickly in IT that it will be a challenge to keep up with it - and Louis.
Now that is a nice problem.
Christmas 2013/14 was all about fantastic beaches, waterfalls and sunsets - good sunsets being hard to find as it turns out.
The highlight was our dear friends, Viv and Tim lending us their beautiful home at Matapouri. We had a brilliant day with 'Perfect day-Dive' snorkling at the Poor Knights. Schools of fish, huge snapper, and the largest natural sea cave in the world. Awesome!
We went to the Wiatomo Caves. Not quiet so successful given the boys night blindness - it was worth the try.
Before this summer is out we are hoping to walk the Tongararo Crossing, one of the best one-day walks in the world with amazing blue lakes, forest, river, mountain and lunar landscapes.
And then came you.
That is the snap shot of 2013. It was huge and we would rather not do it again.
It left Tim and I whimpering in our corner.
Where you all found us.
The journey from here has been amazing, if not a little scary.
At the moment we still have lots of tears, but unlike last year they are tears of delight and awe. The type of tears we didn't even know existed.
The next part of our journey has been well documented. The gorgeous neighbors, friends, community, country and world who have created a wave of kindness and generosity for a little boy with big dreams.
We are sending our kindness, love, support and prayers back to you and all your families.
The World Is Good.
Catherine and Tim