Choosing equipment that makes your child look multi handicapped at 9 months of age is a scary, uncomforting, depressing and overwhelming experience.
But it’s necessary if Jennifer is going to progress, we know that, but yet it still takes time for it to sink in and for us to accept our own choices.
A parent who fails to accept there is something wrong with their child, becomes a failure as a parent…!
Since the summer holidays, it’s been flat-out. Birthdays, Emma’s started dancing classes, Jennifer’s endless appointments, a funeral, choosing toys and equipment…..
Appointments have consisted of an eye specialist, to see if there was any damage to Jennifer’s eyes and to try to correct that or help it. There isn’t but we got told again that her nerve damage is beyond repair. We need to have another VER flash test done, I guess cause the results were inconsistent last time, and to save everyone’s time. If light signals aren’t reaching her brain through the nerves then there’s nothing more to investigate and we really have to move on….everything is black, not even light gets through. We think that it’s not that bad, but it’s probably not far off…..
An appointment with a nutritionist, very useful information!! Jennifer being diagnosed as allergic to all dairy products has really solved a lot of problems….she doesn’t have reflux anymore, she’s so much happier and she’s gaining more weight now than ever. She only weighs about 6.7kg. She’s gained weight at an extremely consistent rate, her weight curve hasn’t deviated at all. But she’s only in the 3rd percentile for weight, but after everything she’s gone through, and given the fact she eats until she’s had enough, we’re happy. Can’t wait to let the doctor who told us “there is nothing you can do about it, it’s the brain damage” know about that!!
The next few weeks is quiet, which is good for a change. But when it’s quiet we start to realise all the things that haven’t been done. We still don’t have an individual plan, no set goals and there’s no word about following up Jennifer’s malformation in London. We just found out that there is no other sight specialist in Stord, and Jennifer’s is retiring. Another strong case for us to move to Bergen, another appointment we don’t have to travel 2 or more hours for.
The first half of October doesn’t look so busy but after that it’s full on. After new years we have an MRI and contrast booked, that’ll check on her hydrocephalus and the contrast on the blood flow through her AV malformation, or for her sake, lack of blood flow through it.
It’s almost October, and although we’ve been through so much this year part of me feels it’s gone slow, and the other feels it’s gone quick. We forget quickly that Jennifer’s only 9 1/2 months old…..There’s so much focus on her it really feels like she’s double that age.
We received lots of tips on stimulating, and how to treat a blind child. There’s so much to learn….there will be a course soon before christmas so we’re looking forward to that. It’s starting to become obvious just how long and hard we will have to work with Jennifer, and for something we don’t even know will produce results….it’s a test of patience! She’s taking small steps all the time, and that’s all we can ask for.
Jennifer’s received some new equipment, Norway has a great scheme for equipment for people with disabilities, we don’t pay for anything yet. Torill suggests equipment, we choose it and she orders it. The physio has been great, she’s not just a physio, she’s a human resources worker too, whether she knows it or not. I’m sure she suggests equipment for us earlier than the intended date for use, it gives us time to adjust to the idea and except it….it also takes time to get the paper work done and get the claim excepted, then it needs to be ordered. I’m not sure how long it will be free, we recieve a pension for Jennifer now because of increased costs we have, and that has helped a bit. But if we want order a simple swing or something like the one below it costs around 11000 nok, or 1800 AUD. Ridiculously overpriced!
This chair Jennifer had before 5300nok or 880AUD!!
It doesn’t really matter how much things cost, we’d spend millions if we could. But it is an issue that needs considering.
The physio suggested this:
Scared the shit out of me at first……Odrun went to get Jennifer measured but the producer said Jennifer was too small. Nice way to sell your products!!!!
Anyway it hasn’t been ordered yet and Jennifer still needs her measurements taken. It’s to get her used to the feeling of standing up, so that when or if she finally can try to walk it’s not all foreign.
No-one knows when that’ll happen, she may be 6 by the time she’s ready, she may be 8 she may be 3 …..she may not walk at all
Will she talk? Will she be able to manage the most basic of everyday tasks like eating from a spoon?
When do you say, this isn’t working….?
What is the main goal and how do you achieve it?
When do you confine someone to a wheelchair? When do you say, we’ve done all we can?
I think sometimes Jennifer is made to be sicker, or worse than she is, and I think sometimes we envisage that she’s better than actually she is…it’s pretty blatant when she’s put in a room with a child who’s 6 months younger and that child is bigger, stronger and looks healthier.
We recently had a meeting with a group of individuals who will help Jennifer locally….half of them were absent sick but it was a useful meeting none the less. We met Jennifer’s occupational therapist…an occupational therapist helps with facilitating day-to-day living, including the right choice of car, Jennifer’s bedroom and any other aids or stimulants around the house.
I mentioned a car….we can apply for a car, I think it is exempt from government charges, which basically halves the price since the norwegian government loves raking in money on their additional charges on imports etc…. A big transporter costs around 700,000 nok or 120.000AUD new. That’s a class 2 car, class 1 is smaller but can still take a lot of equipment. We still have to pay for the car, but can get grants towards it and towards the fitting of any specialised equipment if needed depending on our income. The car should suit Jennifer’s needs for 12 years…..
12 years……no-one can tell us how Jennifer will turn out, no-one probably wants to. Will she need a wheelchair? Does she need support to sit upright for ever?
Who knows, but one things for sure she will need some form of equipment over the next few years….and our car now, a Suzuki Grand Vitara, really can’t fit heaps of equipment in the boot. It’ll take a big pram, and a couple of big suitcases but that’s it. If we need a pram, a special high chair, and anything else when we go out we’ll need a bigger car…sucks cause I love that car, but gotta do what you gotta do!
She also mentioned housing, and the fact that we need to be very careful choosing a new house in Bergen….we’d thought of that of course, but some things she mentioned raised some concerns….might delay our move a bit too.
She was keen on getting a carer for Jennifer, someone who can take care of Jennifer and let us have some time off. It’s starting to feel like we’re drowning lately, every corner we turn seems to present another challenge, another obstacle or another wave of emotions….
Having a carer will give us time to be alone with Emma too, seems everything is about Jennifer, “shhh Jennifer’s sleeping, or don’t touch your sister she’s not feeling well, or make sure you remember to tell Jennifer what you’re going to do before you do it, she can’t see you know so you have to talk to her”…the list goes on…but to Emma’s credit, I think she’s only ever complained twice about Jennifer and that’s usually when the TV is on and Emma can’t hear it! Jennifer is the first one to get a kiss in the morning, the first one to get a kiss goodnight and Emma never ever forgets to include her name in everything we do, when we get places Emma’s always keen to let everyone know that this is Jennifer, my little sister!!! So proud of her!
The carer can be anyone, they get paid by the government and no experience is required. It’s Odrun and I who choose the carer.
We’re doing the best we can to stay on top of things, I’ve taken a leaf out of the Lean manufacturing handbook and added a “to do” list to our fridge. Helps us keep track of everything else, and it’s a good way to follow-up Odrun! haha…We get out of the house as much as possible on the weekends, takes ages to get going (I do live with 3 women) and the weather isn’t always favourable but it’s great to get out and take your mind off things for a while. The amount of information we process literally hurts my brain!!
We’ve applied for a day care spot at a local kindy, Jennifer is prioritized a spot by law . She is required by law to have a specially educated assistant with her at all times. Although I think anyone with a brain could look after her the law’s the law. We visited the kindy with Jennifer, we didn’t get the greatest impression….but we could be wrong.
And that’s basically how this year has turned out, and probably the next few years won’t be any different.
One day things look bright and the future not so bleak, the next you feel like you’re not a part of regular society because you have a child that is different and people seem scared of her, people create fictitious situations to avoid the truth, others don’t want to believe the truth and some seem bemused by the choices we made. People forget our main goal, to help our children. We put them ahead of anything else and we are literally so busy that we don’t have time or energy to deal with the negativity. The challenge is upon those people to do something noteworthy, not us! I couldn’t live with myself if I felt that in 10 years I haven’t done all I can to give my kids the best quality of life as possible. We might find out that the decisions we’ve made were wrong, but at least there will be no regrets that we haven’t tried. We have a small window of opportunity and it’s open now.
A few days later you wonder if this is all just a bad dream and the next day you’re ordering equipment for your child that really makes Steffans scale look pretty much spot on……