Calamity Jane Posted August 24, 2010 Share Posted August 24, 2010 I am feeling very fragile today and fell as though I need to express a few feelings on paper. Dont suppose anyone is reading this so ??? as long as my daughter isn't !! Henni is 19yrs old and was born with an eye condition called posterior lenticonus, she was finally diagnosed at 4yrs old. The condition is present in both eyes and has meant she cannot see as well as everyone else. Her main problems come about because she cannot see to cross roads, read peoples facial expressions, recognize people in crowded rooms. She can read, with the book about 3ins from her face and watch telly of a sorts from about 4ft away. She was told she would never be able to drive. Having said all this on the positive side she is very clever, 11 A grade GCSE's and 4 A levels. I am very proud of her. She has been a difficult child and a challenging adult. She has overcome many obstacles and triumphed. We were told by the consultants at Moorfields that there was nothing that could be done, no glasses or surgery would help. As any mum will tell you it makes you feel responsible yourself and it hurts that you can't do more to help. Last year she went to uni to study geo-physics at Southampton, and came home after 3 weeks !! It was all too much. She has taken a year out and held down a job and in my mind, matured tremendously. Do you know how sometimes things happen and you think - ahhh there was a reason for that ? Well, in April she went for her annual check-up at Moorfields and they decided to perform an operation on her left, and worst eye. !!!!!!!!!!! The excitement and expectation has been indescribable. Yesterday we spent what must have been the longest day ever at the hospital. She had her operation and everything went well. We are now home and somehow it feels like an anti-climax. I feel terrible for thinking like this, I mean how ungrateful must I sound. Her eye is still in shock and she cannot see much yet. I am really scared that after all the promises I have made her about being able to drive and go to uni like everyone else. What if I have let her down. Its like the last 19 years have flown by and everything depends on whether this operation is a success or not. I know I should just relax and let nature take its course........... gonna stop now. Have wallowed enough !!! Quote Link to comment Share on other sites More sharing options...
Bramble Posted August 24, 2010 Share Posted August 24, 2010 Thinking of you both, with fingers crossed for a positive outcome. keep smiling ... Quote Link to comment Share on other sites More sharing options...
BeckyBoo Posted August 24, 2010 Share Posted August 24, 2010 What if I have let her down. Sorry? Let her down? You sound like an amazing Mum! It's hard enough bringing up kids without any physical challenges, you only have to look at what she has achieved already to know she couldn't have done all that without love and support from an amazing woman. It must be natural to be so anxious about something that has such potentially huge implications for her and you as well. Keeping everything crossed that once the eye settles down her vision is improved. Wallow away, I've done my fair share before and sometimes you just need to - all that emotion has to come out somewhere! Sending you a big hug BeckyBoo Quote Link to comment Share on other sites More sharing options...
CatieB Posted August 24, 2010 Share Posted August 24, 2010 I agree with Becky Boo above... very well said Your daughter could not have got so far without such amazing support. You are welcome to wallow at this traumatic time. Keep hope and remember all the achievements so far as a guide to the future. She will come through this and they obviously operated for a reason so there is every reason to think the best..it just needs time Sending you very big hugs xxxx Quote Link to comment Share on other sites More sharing options...
Willow Posted August 24, 2010 Share Posted August 24, 2010 You have my sympathy, people with good eyesight never realise how hard it is to manage with impaired vision so I can understand how it has been a difficult road with your daughter. You and her have done fantastically to get the grades she has and t get and do well at a job at 19. I hope the surgery went well - how long before she starts to be able to tell ? Surgery of any kind is scary but eyes are so integral to our appearance it makes the surgery more scary. What did they do ? I had a lens replacement this summer and am so thrilled, I was very lucky the best specialist surgeon in the country for my type of complication was also a friend so the surgery was less scary for me (and more scary for him ). However even just before I was knocked out for the op he warned he may go in and not do anything if the damage was too great so that I retained the vision I had rather than risk having none. Fortunately it worked better than I'd hoped . Although now I have distance vision in that eye I'm having to get used to not being able to see anything close (including a screen) with that eye so be aware that if it works she may well lose the close vision she has been used to and that can be quite an adjustment. I also found the weeks between surgeries were very hard to cope as my eyes were so unbalanced. I hope it has been successful, please update us with progress. Quote Link to comment Share on other sites More sharing options...
chickenNutter Posted August 24, 2010 Share Posted August 24, 2010 Calamity, it is understandable you are feeling fragile going through what you area as a family, but it sounds like you have been a wonderfully supportive Mum, and I am sure your daughter is very grateful. Fingers crossed that everything will be fine. Thinking of you and sending hugs. Go out and hug a chicken. It always makes me feel better. Quote Link to comment Share on other sites More sharing options...
BarbaraJ Posted August 24, 2010 Share Posted August 24, 2010 You sound like a great mum to me and your daughter has achieved so much. Waiting for something like this along with all the emotions you are going through must be tough, easy to say but think positive and i'm sure everything will work out well as someone else said they don't usually do Ops if they don't think they will help. Quote Link to comment Share on other sites More sharing options...
jlo Posted August 24, 2010 Share Posted August 24, 2010 I can't help but agree with what others have said. It is understandable that you are feeling fragile with all the emotions that everyone has been going through. You have done everything you can to support your daughter and have not let her down in any way at all. I really hope that everything works out well and that the operation is a success. Quote Link to comment Share on other sites More sharing options...
Couperwife Posted August 24, 2010 Share Posted August 24, 2010 CJ you must be totally drained - an eye operation yesterday - I bet you prowled the hospital for the whole time you were there. you sound like a wonderful mum, all of the support you have given your daughter... so university didnt work first time - and? so? for some people it isnt the right thing at 18. sending mega hugs down the computer, have a cup of tea, glass of wine, what ever you want, do not beat yourself up, you sound rather fantastic to me. (((hugs))) cathy x Quote Link to comment Share on other sites More sharing options...
Olly Posted August 24, 2010 Share Posted August 24, 2010 Well your story has made me well up - she sounds like an amazing young woman, and your support and encouragement must have done so much to make her what she is today - many people with that sort of disability would not have done as well as she has already at only 19. I can only begin to imagine what studying, revision and exams were like with that sort of difficulty - to get 4 A levels is amazing. It's often much harder to be the one looking after, than the one going through a medical procedure - no wonder you are feeling fragile. I think you deserve a big treat - no doubt you are busy helping her to get over the op, but I hope you can get a break from things. Here's hoping that the op has worked, and she can expand her horizons even further. Quote Link to comment Share on other sites More sharing options...
docsquid Posted August 24, 2010 Share Posted August 24, 2010 What a fantastic story. You and your daughter are both amazing, and it is no wonder that once the big operation has happened, you feel a bit empty. It is like all the hopes and dreams lead up to this moment and then....what? It must be agonising to wait until the full benefit of the operation is know. But you know you have done your best for your wonderful daughter, and in the long run, things will work out for the best. Lots of hugs to you. Thank you for sharing. There are wonderful people on the Omlet forum, and I'm sure you'll get support here. Oh yes, and try hugging a chicken - it is impossible to feel bad for long when you do that Quote Link to comment Share on other sites More sharing options...
DebC Posted August 24, 2010 Share Posted August 24, 2010 What if I have let her down. Please don't ever feel that you have let her down. My husband also has a serious eye defect (Central areolar chloroidal sclerosis) his parents denied, throughout his education, that he had problem and he left school with no "O" levels! They refused to allow him to be singled out for "special treatment". He later went to college, but because he wanted to, and the college picked up that he was really quite bright! We met at university, he then went on to get a Masters degree and is now a complany director employing 50 people. He can't drive, we have the worlds largest TV and PC screens and there are somethings he just can't do (eg. cut his own toe nails!). I can't help but wonder how he would have done had he had supportive parents! He wasn't registered until we were at University (because he needed to be for the Iniversity to allow him to have the extra help he needed) and when we went to their house after the appoint with the consultant and told them he'd been registered his mother's immediate response was "don't tell anyone". Don't start me on how much I dislike them! You have not, and will never have, let your daughter down. Hope the surgery went well. Let us know how she gets on Quote Link to comment Share on other sites More sharing options...
Plum Posted August 24, 2010 Share Posted August 24, 2010 Sending wishes that all turn out well and you sound a smashing mum xx Quote Link to comment Share on other sites More sharing options...
Calamity Jane Posted August 24, 2010 Author Share Posted August 24, 2010 I am blushing !!!! You are right docsquid there are some wonderful people here on omlet. I cant thank you all enough for your support today, it has been invaluable. Quick update - Henni needed lots of cuddles and reassurance today and thanks to all your well wishes I felt strong enough to give them. I am overwhelmed. xxxx Quote Link to comment Share on other sites More sharing options...
Lesley Posted August 25, 2010 Share Posted August 25, 2010 I'm glad you felt stronger and able to cope. That's an incredible amount of stress over the years and you've been very supportive. Quote Link to comment Share on other sites More sharing options...
chick wiggle Posted August 25, 2010 Share Posted August 25, 2010 Oh Dear me! I can hardly see now through the tears. What a wonderful story of love and support. Sounds to me like your daughter is very lucky indeed to have a mum like you. You should be very proud, your daughter too, you have both acheived so much in spite of everything. I wish you and your daughter all the luck in the world and will keep my fingers crossed for a great result from the surgery. Sending you both lots of hugs Quote Link to comment Share on other sites More sharing options...
Calamity Jane Posted August 31, 2010 Author Share Posted August 31, 2010 One week on and things are looking positive for Henni's eye. It has healed well and although the drops make things blurry, she has been able to see things that were completely out of her range before !!!!! Thank you for all your well wishes and support. I am hoping that now that there are more positive vibes, we are going to enjoy preparing for uni - the next big hurdle. How exciting. Quote Link to comment Share on other sites More sharing options...
Olly Posted August 31, 2010 Share Posted August 31, 2010 That's great news, sounds very positive. Keep us posted - even a small improvement must make it worthwhile, but here's hoping that things like driving are now a possibility. Quote Link to comment Share on other sites More sharing options...
mostin Posted August 31, 2010 Share Posted August 31, 2010 So glad to hear that Quote Link to comment Share on other sites More sharing options...
Plum Posted August 31, 2010 Share Posted August 31, 2010 Good news indeed. Uni will be a challenge but she's got a better start now her sight is a bit better. Quote Link to comment Share on other sites More sharing options...
Seagazer Posted September 1, 2010 Share Posted September 1, 2010 I'm glad there has been an improvement. I really hope your DD enjoys uni. Quote Link to comment Share on other sites More sharing options...
Valkyrie Posted September 2, 2010 Share Posted September 2, 2010 Wow, so pleased there are signs of improvement. It must be a terrific feeling for your DD. You carry on - you are a good mum. Fingers crossed it gets even better. Quote Link to comment Share on other sites More sharing options...
Shirl Posted September 2, 2010 Share Posted September 2, 2010 What great news. It must be such a relief to get some improvement already. She is fortunate to have such a wonderful mum to support her. I hope things continue to improve. Quote Link to comment Share on other sites More sharing options...
Snoxy Posted September 2, 2010 Share Posted September 2, 2010 WOW...what an amazing Mum you are...and what an amazing daughter you have I am in awe of you both Quote Link to comment Share on other sites More sharing options...
