Posts Tagged ‘Judith’
Gelukkige Tiende Verjaardag – Happy 10th Anniversary
I fall in love with her every day as we wake and the first thing I see is her sleeping face, every time she smiles as she wakes. Her smile is the sun rising into my life. For eight years I have seen her smiles deepen the laugh lines like parentheses on her lovely cheeks, setting her mouth off from the sentence of her face as though it were a secret known only to me.â€
These words were written by Judith a couple of years ago as part of a lovely story of love, passion, and wonderful celebratory sex. Ever since I read these words the passage stuck in my mind having sparked one of those “Yes!†moments.
Cees, Peter, Mia, Nonke and I would like to wish Judith and Nina a very happy anniversary, May 12th will mark their 11th year together.
If you are new to this site, or a casual visitor you might not be aware of the extraordinary and painful events that brought them together, but from that dreadfull time we have watched this beautiful partnership grow as they have both grown. Despite some continuing challanges they have forged ahead to build a nurturing home for four children.
When Nina started dating Judith I seriously wondered if poor Nina had any idea of what she was getting herself into but then as I came to know her I realised that she knew exactly what she had gotten into, indeed she was just where she wanted to be. She has a warrior spirit and one who had found a cause she that felt was worth fighting for, it was perfect timing and Judith’s very good fortune. In return Judith brought the partnership the stability offered by a rock solid family ethic and the discipline of a sharply focused mind.
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Happy Anniversary my darlings.
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Lots of Love from all of us, XXXX
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Falling (The Need For Wings)

Judith Brain Surgery
“And here I am falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.
If it weren’t for your wings I’d be gone.”
From the moment Judith went into hospital Nicky (8) and Hilke (9) were constantly on at me not to let her have any surgery until they were there when she was woken up afterwards. I have to confess that perhaps I did not pay as much attention at first as I should, wrapped up as I was in my own worries about Judith, but the increasingly difficult behaviour of my kids eventually forced me to take notice. So while I set about trapping six of the neighbourhood cats they had set to roaming the house and cleaning the whipped cream off the kitchen floor, units, walls and ceiling I spoke with the kids while trying not to scream at them. Having spent the last eleven years living at close quarters with first one then two hearing impaired people I am a little surprised that it has given me both an insight and at the same time left me somewhat insensitive to them and their world, but sometimes the rush of life can blind any of us.
After Judith’s last experience of waking from surgery the children had later asked their mother what made it so horrid and frightening for her. They were confused as they had been told by all the adults around them that their mother would be fine, that she was in “good hands” and yet they had seen what they had seen and were therefore confused. Eventually they asked her and Judith had told them that she hated it so much because the first thing she felt as she started to wake was that she was falling, plunging down at great speed and without any control. This was not just a physical feeling, but she felt like she was falling in her heart as well. It is a legacy of the destruction wrought to her hearing and balance centres twelve years ago of course. When that hammer smashed into her skull it destroyed a great deal.
When we go through a change in the state of consciousness our sense of hearing is the last thing to go and the first thing to come back as we go and so it provides some sort of anchor to our senses but, just what do you experience when that sense is as well totally gone, and layered on top is compromised vision ?
The answer it appears is that you feel like you are falling, falling a very long way. I am rather ashamed that it took my children to highlight this and demand to be with their mother as she woke so that maybe they could in some metaphorical way catch her. I spoke with Nonke, the child psychologist of our little group and she thought that given Nicky’s extreme sensitivity to Judith’s problem following the encounter with the English tourist that it would be a good idea to do just as they were asking. So then we contacted the nurses and doctors looking after her and “wake-up day” was carefully planned for when the children could be there.
Thirty hours after the surgery she was unhooked from ICU and taken to the neurology ward where she was brought up from the induced coma with Hilke and Nicholas either side of her clinging onto a hand each. Movies and TV always get it so wrong in their portrayals of waking from a coma. The heroine, hair and make up all perfect, flutter their eyelids and gracefully wake up. It is all very clean, very lady like and utterly false. Back in the real world there were naso-gastric tubes, central-lines, breathing tubes, drains and pressure sensors springing from her partially shaved head like some StarTrek cyborg. Waking up can be anything but pretty and dignified as the person chokes, coughs or vomits, sometimes waking up only to go straight into shock. No it is definitely not as shown on TV.
We had prepared the kids carefully to focus just on their mother not on what else went on around them. Then the agent to reverse the effects of the muscle relaxants was injected into the central IV line. As she started to wake and fight the ET tube it was swiftly removed. Normally at this point the patient would be talked to, told where they are and what is happening and about to happen in order to reduce the waking distress, but of course when you are deaf you have to be left to wake into confusion, disorientation and panic. Nicky was signing onto the palm of her hand and it did appear to work to some degree. Hilke was caressing her face and neck in the same way we had caressed and tickled all our children to calm and reassure them all their lives, it made me smile inside to see it. Considering that on previous occasions I have seen Judith wake fighting and screaming and kick a doctor so hard he became a patient himself this was a peaceful waking by comparison.
Then she was there, Judith was back. She was groggy, sore and not firing on all cylinders but she was definitely back, the rest would come over the next few hours and days but I was happy and relieved that the big hurdle had been cleared.
Then it happened – my heart was pierced.
I watched as Nicky signed to his mother that he and Hilke had been there, to stop her “Falling”. I saw the look of recognition cross her drawn face as then in slow and painful movements Judith replied in sign;
“Don’t worry [precious ones]. You are MY wings, and when you have wings you cannot fall”.
My heart felt like it was bleeding as the message of this little exchange swept over me. From my eight year olds seeing what I had not, to the realisation that for all Judith’s apparent inner strength she was in fact so totally reliant on the infallible and imperfect people around her, to my total pride in the empathy shown by the children. This was the beauty of the small moment born of love that I had just witnessed. The rewards of parenting really do come from those unexpected small moments of revelation – and for me at that moment it was almost too much bear.
It was not until late that evening back at the house on the Singelgracht that I cried. I had been recounting the day’s events to Nonke, Tyjardia and my sister in law Carol when Tyjardia got up and dropped her iPod into the HiFi dock. As the music played I listened, LISTENED – a privilege that I still have. As I absorbed the words of the song I dissolved into tears as I remembered my day and seeing Judith’s wings in action, helping prevent her falling. I often try and imagine the fears that life would hold for me if I were deaf and my sight inefficient. I could manage a day, maybe two, but a week, a month, a year, ten years ? I believe I would be looking for my wings very quickly indeed as fears and terror slowly tried to squeeze the life out of my life. I could understand her fear of falling now and her words to the children.
So, my thanks to the wonderful English folk singer Kate Rusby for expressing what I am sure Judith would express if she were able to still enjoy music, as well as my thanks to my little bundles of character and contradiction commonly referred to as my children. Between you all you gave a perfect moment of happiness and pain, yin and yang.
Falling by Kate Rusby (1.9mb download)
You heard me shout hear me shout when no one’s about,
You find me where I can’t be seen.
I feel the air flowing for life’s in full swing,
So tell me why I cannot breathe.
And here I am falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.
If it weren’t for your wings I’d be gone.
Time moves on and time won’t be long,
In time I will fear not the day.
I’m endlessly knowing that you’ll never know
What I might want you to say.
And here I am falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.ings I’d be gone.
My back it aches, my body it breaks;
To grow my own wings I have tried.
And painless I came no aim must remain,
Alone and adrift on the tide
But here I’m still falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.
If it weren’t for your wings I’d be gone.
And here I’m still falling,
Oh why am I falling.
Take me to where I belong.
I’m standing here falling,
Before you falling.
If it weren’t for your wings
I hope Mevrouw Rusby will excuse my providing this track (albeit in much reduced quality). I urge you my dear readers to visit her web site, purchase (as I have done) her albums and help in some small way to promote her lovely talent
Kate Rusby on Amazon:
Amazon.de
Amazon.co.uk
Author: Nina
Judith Surgery
You may have noticed that Willothewisp has been a little quiet of late, there is a reason for this. Judith has had to go back to hospital after she developed some problems with the area around one of the metal plates in her skull. She had been scheduled to go back later this year to have both the plates replaced with new ceramique ones after it was noticed that she was developing early signs of her body rejecting the original plates. A couple of weeks ago things suddenly started worsening and her vision was again in trouble so it was back into hospital with her. Given the amount of work already done inside her skull, and her reduced senses, we do not take any chances with her health, hence the swift hospitalisation. The timing was rather unfortunate with Joost so recently added to their family so we have been pooling resources to help out with the child care and as a result we have all been rather busy.
Judith was released today and is convalescing at the town house in Amsterdam. She is comfortable though she does get tired very easily. Happily it is clear that her vision is within her normal range again. Her scalp is sore where it was peeled back for the surgery but it is healing well with the help of Far Infrared Light Therapy.
A big concern for us is the impact on the children, especially Nicholas who has never quite recovered emotionally from the incident with the English tourist and seeing his mother unconscious and bleeding in the street. He finds seeing his mother hospitalised very tough going so we are investing a lot of time in him right now.
I expect things will return to normal by this time next weekend, until then we are forcing rest and inactivity on Judith while supporting Nina and the rest of the family.
Kind regards, Tyjardia vL
WiFi Dog !
I love my father in-law, actually I adore both my father and mother in-law but today I am talking about my father in-law.
My father in law Harry is this placid, patient, generous farmer who is incredibly skilled with his hands in mechanics, electronics, in fact in almost anything. His mind is this boiling, bubbling pot of inventiveness that he applies to everything.

Sissi & Saddle Bags
One perennial problem for Judith has been keeping in touch when out and about. This took on new urgency and increased complexity after the injury that damaged her eyesight. Speech to text phones are less than perfect , SMS texting and e-mail messaging are definitely useful but once Judith’s eye sight was damaged we encountered a new problem, she could not see the text on the screen of most mobile phone texting devices. Apple’s iPhone was a possibility because applications have been developed that enhanced screen text but the down side is that iPhone is expensive to buy and run here in Europe, and it is so locked down by Apple that truly innovative development for the people with disabilities is severely restricted. There have been some interesting devices developed in the area of mobile phones but they are always expensive and the pace of development now is such that any investment in those devices effectively ties you into an expensive one or two year contract on technology that is very quickly obsolete.
The solution lay in the Netbook end of the PC market. These cheap devices are much more useful for deaf and visually impaired, but they are usually restricted to wi-fi networks limiting your to communication to only when you are in range of a public access point such as in a café, library, train station etc. This can be got around with 3G modems running off the mobile phone networks. The modems are now cheap and as long as you are not downloading large files they are cost effective but they plug into your netbook and run using power from the netbook shortening battery life and tying the modem to just that device.
One day at a family dinner at which we were discussing this problem and  Nonke’s oldest son Cees said, “What you need is a wifi router connected to a 3G modemâ€. Clearly the comment struck a note with Harry because the other weekend while spending the day at my in-laws farm Harry showed us his solution. Contained within the saddle bags worn by Judith’s guide dog Sissi were a lithium ion battery pack on one side with a 3G data modem attached. There was also an Apple iTouch, plugged into the battery pack and charging. In the other pack was an ASUS T91 Tablet PC with an 8†screen. The combined weight of all this was perhaps more than Sissi would normally carry but it was there to make a point. Harry told us that the MiFi battery lasts for five hours after which it can draw on the main power pack battery. The iTouch has it’s own internal battery but can also be charged from the main power pack battery. The small touch screen netbook runs about three and a half hours but can also be powered by the external battery. Coming onto the market now are a number of larger format touch screen devices in the 15cm to 25cm ranges, all of which could be suitable and lighter substitutes for the relatively heavy ASUS.
We have been testing the setup for the last couple of weeks in slightly different combinations and it has worked well. Occasionally in some of the oldest parts of the city the 3G connections drops, we think something to do with the density of the local stone in buildings here but aside from such minor problem it has worked well. So now Sissi is not only Judith ears and one third of her eyes, she is her wifi point and mobile communications centre. I am much happier knowing I can reach Judith more easily and I know she is more comfortable being out on her own knowing she has instant communications back to any of us. All of this using a set of components that are cheap enough on their own to be upgraded as better products come along and not tied down to long contracts.



