I've just read the header of my blog...the bit where it says about my wonderful family and my ordinary life. I do, indeed, have a wonderful family but an ordinary life? I don't think anyone ever has an ordinary life do they? My life is far from ordinary so maybe I need to reword my header.
It's been another up and down week for me. More ups than downs which is great. Unfortunately there was some very sad news to take on board. The kind of news that makes you want to live your life to the very limit and get as many experiences as you can. The kind of news that makes you want to love and laugh and have fun all the time. Life is precious and should never be taken for granted. My love goes to those affected.
Also, last Tuesday we received a call from my poorly father in law's GP to say that we had to get him to the local A&E department as soon as we could following results of his delayed blood test. Hubby and I picked him up and got him to hospital where he was admitted and where he remains for now. He has been treated for severe dehydration and a chest infection at the very least and has been responding well to treatment. His memory has improved greatly so there are no more dementia worries for now. His mobility remains the main concern which is hardly surprising for an 85 year old man who has lost a stone since Christmas and who is convinced that he doesn't need to eat because he's not hungry! We await further news and he is getting frequent visits from various sons on a daily basis. He's actually a very lucky man to have such strong support from his family. We have been told many times over the last few months that lots of elderly people get no visits from anyone from one week to another. Let's hope that he makes a good recovery and isn't left with too many difficulties to face.
Now for the totally amazing good news. My middle daughter has had both of her scheduled eye surgeries. The cataracts have been removed and been replaced with lenses which means that she can actually see better now than she has ever done in her whole life. How incredible is that?! At the moment she doesn't need glasses for distance viewing and we picked up a £4.50 pair of reading glasses from the local newsagent at the hospital and she can see with them really well.
One surgery was completed on Friday and the other one took place on Monday. Each operation took roughly 20 minutes, although she had to have a general anaesthetic on each occasion as the cataracts themselves were complicated. Apparently, cataract surgery these days is done under a local anaesthetic which sounds horrible to me!
The surgery took place at Addenbrookes Hospital which has a specialist diagnostic clinic for Stickler Syndrome. The pioneering team who specialise in this condition is headed up by Martin Snead who is an opthalmic surgeon extraordinaire and who appears to be the king of all things Stickler as far as the nurses who work around him are concerned.
After op 1, almost immediately my daughter was aware of the brightness of everything. After years of things appearing stained with smoke and tinted brown she could see white walls. She could see patterns on the lampshade in the room that we were staying in and the swirls in the Artex on the ceiling. Most moving was the fact that she could see her 12 week old son's face clearly for the first time and she she could see him smiling from a long way away!
After op 2, she was able to see car number plates which she has never been able to see before. We went to Starbucks for a coffee on the morning after the second surgery and she stood and read the menu board at a distance without any glasses at all. She was able to read the very bottom line with no problem....the middle menu and the very bottom line...
The two post op checks were successful and we finally set off for home on Tuesday morning. On the journey home my daughter picked a hair off of my jumper that was annoying her. She did it without even thinking. She would have been completely unaware of that rogue hair just a day before.
So now she is thinking about learning to drive...something that she was always told would be highly unlikely and something that, if it was to happen, would transform her life and the lives of her family.
While I am completely overwhelmed with the enormity of the surgeries outcomes, my daughter is much more pragmatic and is taking it all in her stride, I think, as the days go by, as she starts to retrace the steps that she has been taking over the last year when her sight has been so very poor, she will be more and more amazed at the difference this is going to make to her. She is, by no means, taking it for granted but she is taking it a day at a time.
While we were staying at the hospital there were daily telephone conversations between my daughter and the three children that she had to leave at home with their Daddy. Her eldest daughter, who is 5 going on 15, asked how Mummy's eyes were and Mummy said 'I'll be able to read you a bedtime story now that my eyes are better'. The reply 'Really Mummy? Hooray!!' moved me to tears.
To be the mother of any child who has disabilities or long term medical conditions can be fraught with worry and fear. The responsibility and guilt and anguish and stress that you feel cannot and should not be underestimated. In my experience at least, things often don't go as planned or as expected and there can be disappointment and tears along the way so I am very, very happy to shout about our experience in this instance from the rooftops.
As a consequence of our experience,and due to lack of contact with or from the Stickler Syndrome Support Group regarding our fundraising for them as mentioned in my last update, I have changed my mind about which charity I am going to fundraise for this year, The Stickler Syndrome Diagnostic Clinc, based at Addenbrookes Hospital in Cambridge, is doing truly wonderful work for families and individuals affected by this genetic condition. It is the only such clinic in the UK. When my eldest daughter was born and we had the condition diagnosed, there was no information available. I had to explain Stickler Syndrome to almost every medical and nursing person that I met. Nobody had heard of it. We were given the gloomiest of predictions for my daughter(s) , none of which has come to fruition and I am eternally grateful for that every single day. Knowing that there is a specialist centre for families like mine is a wonderful thing.
I have been in touch with Martin Snead about fundraising and he is delighted that we hope to raise money for the clinic. Following our experiences there in the last week i hope that anyone who reads this will be happy for me to change my choice of 'charity' for want of a better word. Any funds and, indeed, any donations will be going straight to Martin Snead and should be made payable to 'University of Cambridge-Retinal Research Account'. This should ensure that the funds go directly to the clinic and for further research into Stickler Syndrome and not be swallowed up into the black hole that is Addenbrookes which, like all other hospitals, is struggling from underfunding etc.
Finally, a word about my wonderful grandchildren who have been absolutely brilliant by all accounts while their Mummy has been away from them. Their Daddy has been a star and their routines have gone ahead as usual. The three little people who stayed at home with Daddy have been helpful and well behaved. I love them so very much, The fourth little person who stayed with Mummy and I while we were in Cambridge and who charmed everyone he met and who was so, so good deserves a special mention in dispatches. Waking up to this little face every day has been a joy...
It's been a full on week and it's not over yet. Tomorrow sees me going to a funeral and then working a night duty. Then it's the weekend and more work. Life goes on.
Thanks for reading this and I make no apologies for going on a bit!!
xxxxx
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