Being blind…..

Imagine what it is to be like a nine-month old baby who is blind……..

As Jennifer lies on her tummy  she can  feel vibrations through her hands, knees, tummy and head.

Jennifer hears sounds, some soft, some loud. While some sounds come from the same place others move and become louder or softer. The door closes and she stops up, someone’s coming, she hears the footsteps gradually nearing her until they stop, a quizzical look on her face, somehow she knows it’s me….maybe she can smell me, but none the less she gives me a big smile.

Comfortable around others now...

Tastes are different too. A toy is put into her hand, if she manages to get it up around her mouth she chews it. As she places her face into the play mat she tastes it. When she feels objects some things are hard and soft. Like her teddies some are furry, others smooth, warm, cold or rough.

She is aware of movement by herself and by others. If another toddler runs past her, if a noisy toy is put into her hands or if she is lifted too quickly it can be scary.

Gradually things will begin to make sense. When she hears our voices, she’s reassured. But when she hears a different voice, she doesn’t  know what will happen. Some people feel familiar and safe, while others are strange. She has begun to learn when placed in a high chair or when on the couch getting ready for a bottle, food is not far away.

So even without sight, she is learning to anticipate what will happen next and she  now feels secure in certain situations. It’s only in the last 6 weeks or so I can finally hold my daughter without her crying…….that can mainly be blamed on her lactose intolerance and the fact she was always feeling unwell, but we can’t forget that she’s had to learn who we are without sight.

Maybe that’s a good thing….I’ve always been of the opinion that “everything happens for a reason”, that reason might not seem clear until well into the future, but it will become clear one day…. Maybe by being blind, it’s forced Jennifer to use her brain, and get the most out of it while she’s young and it’s still developing.

 She is still unaware of much around her. There might be toys next to her, but if she doesn’t touch them she might never know where they are. Although we’re moving her out of her little room, she has got the hang of it now, she bats at the bells and other toys and makes herself laugh, she waits and does it again……..

Taken from the vision australia website;

“Sighted children learn mostly because they are curious about objects that they can see. Children who are blind are unable to see interesting things to grasp and will not develop curiosity about objects unless they are in direct physical contact or encouraged to do so.”

” A nine-month old baby who is blind is unlikely to reach for something that makes a noise, no matter how interesting it may sound. If they drop a favourite toy, they are unlikely to search for it. However, if through touch they are given the slightest clue as to where it is, they will grasp it quickly. A child who is blind can appear uninterested and lacking in curiosity, even though they may be listening intently to what is happening around them. To reach the stage where they will reach to sound and search for objects, they must be given experiences to encourage their curiosity.”

I like that sentence ” A child who is blind can appear uninterested and lacking in curiosity, even though they may be listening intently to what is happening around them”

A lot of people, ourselves included, have asked the question “Is there much going on up there?” The last 2 months we’ve learnt more about Jennifer than we had in the first 6 or 7 months. We know our daughter now, and she knows us. And our gut feeling is that  this little girl is not stupid. We’ve had to learn how to interpret her facial expressions, her different pitched cries….she now lets us know when she’s lying on her play mat that she wants some attention, she loves her little stretches that we do, she smiles and laughs at Torill now, she’s never done that before!

We’ve seen the looks on people’s faces when Jennifer just lays there, might not be the brain damage that makes her all quiet…….I guess that’s just a part of having a child with a disability, we’ll just have to get used to it and except that they are curious too…..

But something that people don’t understand about brain injuries is that before in time, they would be called mentally retarded…not the case anymore, not just because it’s socially unacceptable to say that, but because research has shown that these brain injured children are as smart as you and me….but the brain injury is classified as disorder…and that’s exactly what it is…..the brain is in disorder, the electrical impulses that are sent out are crossed and twisted and the result is a person who doesn’t have control over certain actions or movements….control….not retardation…in some of the worst cases, it could be quite sad that a grown person has lived in a body over an extended period of time that they have no control over, a living nightmare. And that would drive anyone insane……….

There’s different reasons for why I’ve written this blog, it’s a really good way to inform my family and friends in Australia and Norway of what is going on, it can be easy to leave out details when talking on Skype or on the phone.

It’s therapeutic, there’s a lot of emotions involved in what we’re going through and this is a good way to express them. It’s also a good way for people to understand why we do the things we do……

There’s been a lot of misunderstanding, there was conflicting diagnosis’ when we first found out…It’s in black and white now so there’s no excuse for not understanding!

And for anyone who is going through the same thing, that they’re not alone……

When we came home from the hospital with Jennifer, I especially, searched the net for blogs and other stories, pictures and so on of what a severely brain-damaged baby looked and acted like. Trying to compare Jennifer and trying to find some positives in what was otherwise a really uncertain time……there was little if anything I found. I hope someone stumbles across this one day and gets something out of it!

Sick kid=sick parents. Never understood it, do now!!

I was offered sick leave many times at the start, but I refused. What’s the point in staying home? Following in each others footsteps all day is not gonna help.

One of us had to get away from  home life, and work was  refreshing in a sense that when I came home I could relieve Odrun a bit whilst still feeling fresh…..

Stress has become something we’ve had to learn how to deal with……whether the stress is from having too much on your plate or the fact that you feel like you’re living in a nightmare and there’s no way out…….the entirity of all of this, the check ups, the medicines, the financial aspect, the headaches, the anxiety, the frustration of ignorant health care workers etc….

People ask with a confused look on their faces; “Yeah but it’s going better now, you’re over the worst?……. Jennifer’s better than she was and is  fairly easy to deal with but the simple fact that her future is so uncertain is something we have to live through everyday. Nothing is more unnerving than an uncertain future, especially when it’s one of your kids who is completely dependent on you.

Nothing hurts more than knowing there is something wrong with your child….give your child a brain injury, make your child blind….see how you deal with it!!!!

I don’t think you ever get over it……you just learn how to deal with it.

Like losing someone close to you, you still wait for them to come home…….

I still wait for Jennifer to look me in the eyes…….I sit next to her and look at her………and wonder what if!

It’s hard waiting for something to happen when you don’t know if it’s ever gonna happen!

Said it before but life has changed dramatically this year. We’ve evaluated what we can do to ease the pressure on ourselves and what we can do to make everyday life as stable as possible for Emma and Jennifer.

We’ve decided that during next summer we will move closer to the hospital in Bergen, not having a ferry between us and a hospital.

It reduces the number of doctors we have to deal with, which is at the moment a major pain and extremely ineffective.

Generally not the people, but the fact that we have to visit 3 different places, all the time meeting new faces, we think we can cut that number drastically if we only have 1 hospital to deal with. Stord is probably the worst place to live if you have a child such as Jennifer, there are no specialists here, only 1 pediatrician and the hospital has no children’s ward.

Sandwiched between Haugesund and Bergen hospitals is agonising, they don’t use the same computer system which makes referrals and following up a nightmare! Doctors never talk with each other and when they do they seem to fight over who gets to treat Jennifer. Results get sent everywhere except to us, and we have to ring around all of these places and no-one ever knows where it is!

We won’t waste a whole day traveling if (when) we meet a doctor who wastes our time. We’ll save a bit in travelling costs too…..

A change of scene is almost as is important as the rest. A new start in a way,  we’ve never really liked living here but I’ve got a good job  and that’s kept us here. Money isn’t important anymore, our children are and I as I said before, we’d do anything to give our kids the best quality of life we can!

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