It’s been a month since Sabrina has been prescribed glasses to strengthen her right eye (weak one), and she has now got two pairs of wrap round type glasses. This is on the top of ongoing eye patch training. Baby + glasses? (toddler precisely) Well, put this way, equal really hard work! She takes them off as soon as we put them on. Tried so many ways to distract her, by letting her hold things, our hands, keeping her busy etc, obvious things you can think of. I even put her socks on her hands (sorry I was mean, babe!) and that did last only for a minute. Eye training at this age is mainly to maintain her brain function for the future. If that stops, when she gets older, then even if she did another op, the brian won’t pick up what she sees. So we know how important this is, but how on earth are we suppose to do??? Anyone, any trick? xm
2 August 2014
Last weekend we went to POTFEST in the Park. One of my favourite ceramic events in the UK. A place that I always find something I adore (and never have enough money to buy all the things I am fond of!) This time, I would like to share three artists work that I very much enjoyed.
Very distinguish bold and quirky expression of nature, animals and humans in ceramic reliefs by Hilke MacIntyre. I first saw her work at a local gallery a while ago and instantly fell in love. I have a little collection of her work but since she is based in Scotland, I have never seen her in this sort of event in the past. So when I found out that she was at POTFEST this year, I was over the moon. It was lovely to see so much of her work and each story made us smile. I took a little plaque with mum and daughter on her shoulders home as a new addition to our collection. You can view more of Hilke’s beautiful work here.
Another artist from Scotland, Wendy Kershaw creates beautiful porcelain plaques with illustration. Her illustrations contain interesting stories, which makes you look closer. I found the combination of that with some transfers, cobalt and a touch of gold, an absolute gem. Fine needle lines are almost like etching yet the surface was so smoothly polished. "Elegance" might be the word to describe it. I have never seen any work like this before and my heart was particularly stolen by her porcelain book. Stunning! You can view more of Wendy’s work here.
Finally Isabel Merrick from Devon. I started to buy her work since I first saw at Rufford a few years ago. Lively and playful colour decoration on her tableware are very eye catching. But this time she was also exhibiting her unique selection of more sculptural pieces. A totally different approach and firing. The way everything was put together with slip, glaze and scraffitto. Its wacky shape. Its dynamics. I absolutely loved them. In particular I adored this vessel with angel like wings. I had to push my limit to take this home! Thank you Isabel. You can view her brilliant work here.
19 July 2014
My daughter has started to go to the nursery, which means that I have also returned to work. Although this is only my main job as the workshop instructor and I am still not officially back to my studio work. Finding it almost impossible to get that sort of time yet. All I can get is a few hours on the weekend whilst my hub looks after her. She has become more clingy to me at home at the moment possibly due to being separated from me three days a week and even her dad finds it difficult to settle her for nap etc. Nevertheless, we have managed to make a few hours on several weekends so far and these few hours in the studio have certainly given me a buzz. I’m currently preparing for the exhibition (small but solo for the first time!) in October. Hope I can get enough things done in the limited time. I shall keep you posted. xm
4 July 2014
A year really has gone. An utterly shockingly super fast year has gone.
A year ago, the moment a new life turned us into unexpected difficulties and despair.
Did I imagine if I could cope?
I remember that the lady consultant who we saw very first time at Manchester Eye Hospital told me to “enjoy” it. The word of “enjoy” was rather crazy to hear at that time, whilst we were in the middle of all happening to my daughter. But I know now that was exactly why she said it. She really meant it, because she must have seen so many parents who came with new born baby with traumatic eye condition, feeling despair, focusing on the problems they have to face and forgetting to look into the bright side. You know, all about the blissful joy of bringing a child who grows so fast. Really fast indeed.
Sabrina, like any other babies, did grow fast. On her own speed of course, but there were so many little things that she has developed each day, week and month. Watching it happening was truly heartwarming.
Sabrina has started nursery training a month earlier than my return to work date. We have been visiting and playing for an hour or so to start with, then gradually made it longer and I started to give her more distance. Sabrina first cried big time but this gradual process helped her to settle. Staff were very supportive all the way. Being in a different environment with different people must have helped her develop not just emotionally but also physically. Before we know it, she has quickly learnt crawling and standing! Off she goes now all over following her visual curiosity.
Did I ever imagine a blind baby reaches to this milestone?
Am I smiling now?
A big fat yes.
|Happy Birthday Sunshine Girl!|
12 May 2014
7 May 2014
April just came and went. Sabrina is 10 month old. Already. Surely things are supposed to get easier as a baby grows, but it just brings other difficulties, doesn’t it? How does everyone keep up with their time when they have a baby? I used to be a much organised list person. The whole point of making a to do list is to get that satisfied feeling when you have crossed the items off the lists. I can hardly cross anything these days and the lists carry on to the next week, next month… Well, I stopped it. Welcome to the life of motherhood.
Thank you for your kind advice on the previous post. She is doing better. I am also thankful for how things are with Sabrina. Despite the every day chaos, she has come so far, especially for her eyes. It’s just a miracle. Just grateful. xm
28 March 2014
nearly time to say good bye to winter bear suits?
Can’t believe it’s nearly April! Time flies! Still cold up here in North Yorkshire but spring is just around the corner, which makes my heart sing.
April was originally planned for returning to my work, but I had to extend my maternity leave to the maximum as Sabrina was not quite ready to go to a nursery physically and emotionally. Firstly, she does not take a bottle at all. Secondly she has huge stranger & strange place anxiety and screams the place down endlessly or makes herself sick.
Currently we are going through with this transition period, but it is seriously hard! I stupidly imagined that it will take a few days… absolutely no way. We have been training her for months and only just recently started to show the progress. She can now take milk from a bottle sometimes and cries less when strangers are around and visited different places. Still hard work and stressful though… Will she be ready in June???
Like I mentioned here, she is behind the curve, so her motor skills are not quite up to normal 8 month old. No sign of crawling yet, but we have made some transitions within the house too. Built a guard around the fire place (not for fire but the marble floor with sharp corners) and covered ‘fluffy’ carpet with handmade activity mat (so that fluff does not end up in her mouth and it can be washed). She does also Skype with her grand parents regularly who are coming to visit her in May. How exciting! Hope she won’t cry too much?
If you are a mother and have some advice on how to tackle baby’s stranger, strange place and separation anxiety, I’m all ears. xm
27 February 2014
This pair of dolls called ‘hina doll’ were originally given to me from my grand parents when I was one year old. As I mentioned in this post, we display them to celebrate girl’s day (3rd of March) and wish for girl’s growth and health. They have been displayed at home every year and my mum continued to do so for the last 40 years, even after I came over here. This year, my parents kindly posted them to us to cerebrate for Sabrina. Beautiful silk kimono tucked in to carved wood. Individually hand crafted. Tradition and family history continue to a new generation. Sabrina’s great grand parents gift. I feel quite overwhelmed.
Have a lovely girl's day, Sabrina! xm
22 January 2014
More than 80% of baby’s learning comes from sight, I read somewhere. From what they see, they learn to use their hands and body, alongside the brain development. For Sabrina’s case, as she was born blind, her development has been significantly behind. Even after her cornea transplant on her left eye and she has started to see something, there was no hand and eye coordination. Without eye and brain development, there was no incentive for her to move her hand, head or any part of her body. Her hands were always just dangling on the side, her head was flat on the ground when she was on her tummy. This lasted for quite a long time. What I did then was to guide her arm to try touching things, move her body to feel the existence of space and make a noise and speak to her to give her the idea of direction of where things are. This was a daily routine of us, regardless of whether I felt any improvement.
Sabrina is six and half months today. Her eyes now follow things not just the lights, holds toys with both hands, bring them to her mouth and tries to reach to things a bit further. She reaches out and touches my face too. She can also roll over from tummy to back and can sit supported. Although she is still behind the average, this is a huge development for her and I am so pleased to see this happening.
Her right eye with no transplant surgery is a weaker one and ultimately it has a tendency to rely on her left eye. If the eye is not used, the brain stops developing too. So she has to train her right eye, currently an hour a day by patching her left. She absolutely hates this, trying to take the patch off and crying. It’s been an another battle but it seems that her right eye has started to follow things too.
There won’t be ‘eye to eye’ contact with Sabrina, but this was my egoistic wish. When she reaches out to my face, touches and smiles, I now feel this is enough. Instead I know ‘heart to heart’ is connected. You know being a mother is really hard work but also you receive so much in return. xm
2 January 2014
Thank you so so much for your comments on the previous post. We were so touched and encouraged by them all. Each one of your kind thought has become a big hope together for Sabrina. We are so grateful. Thank you.
It’s a new year, new start. May 2014 bring you lots of smile and happiness. Hope you enjoy some random pictures from our Christmas. (and she’s just started weaning! How awesome is that!) xm
It’s a new year, new start. May 2014 bring you lots of smile and happiness. Hope you enjoy some random pictures from our Christmas. (and she’s just started weaning! How awesome is that!) xm
14 December 2013
July was a tearful start.
August went with no time to cry.
September was tumble.
October was another tumble.
November we tried to pick up ourselves.
December we’re looking back and blessing for how far we came.
“I’m afraid your daughter cannot see.”
Doctor told us when she was three day old. It was the day I got discharged from the hospital. I could hardly move with pain from emergency cesarean, let alone holding and feeding my baby. Nevertheless it was a huge relief coming home after exhausting three nights of being unable to feed her properly despite frequent midwives advice, feeling completely alone, intimidated and hopeless. At the same time there was numbness all over me, blended with confusion, denial, despair and sadness I have never experienced before.
During my early pregnancy, the fetal test had picked up an abnormality. Later on we were told that our baby has a heart defect, which might require surgery soon after she was born. Although they seemed to be quite confident in fixing this problem as it is not that uncommon, it was obviously difficult for us to accept. Worry and uncertainty carried on but we just hoped that the rest would go well. So when the ‘eye thing’ came up on the top of that, everything seemed to fall down for us. We were devastated.
Both her eyes looked cloudy because of opaqueness on her cornea. She was diagnosed Peter’s Anomaly. This condition can occur randomly to anyone, but it is very rare, something like 2-3 cases in 10,000. How unfortunate. It cannot be cured or corrected by glasses. She will not have normal sight. The only way to give a chance of sight was a cornea transplant, which carries a very high risk for a baby because of the likelihood of rejection. Her eyes were also suffering from high pressure. She immediately started eye drops to reduce this and prevent further damage, which could lose her eye altogether. The more we learn about the condition of her eyes, the more indescribably painful it was. And this was only the beginning of our long journey.
She was soon referred to Manchester Royal Eye Hospital. On our first visit, the consultant explained to us many things; her eye condition, how baby’s eye and brain connection develops, operations, risks and so on. He told us to prepare that it is going to be a long shot with something like 80 appointments a year to come. It was overwhelming. Ironically I work with people with visually impaired and am trained to support them, however, I was far more ignorant. I did not know how the brain connection develops and when it develops. Brain connection for baby’s eyes peak at 8-10 weeks. She was already coming to three weeks. Time was already ticking. If going for a cornea transplant, the risk of rejection for a baby is 50% or more. But without doing anything, she will only have light perception, for the rest of her life she would live in the darkness. We opted for taking this fighting chance to give her best potential.
Hospital visits have been almost every week, sometimes twice a week. It is four hour journey from us. We usually set off 5 or 6am to beat motor way traffic. We often stopped on our way home to feed her and administer medication here and there, which made a single appointment almost all day. She also had other appointments for heart, pediatric, generic, vision support team and you name it. The calendar was full almost every day. In between, I tried to establish breastfeeding routine, which had often gone out of window. Also trying to give her as much visual stimuli as possible to encourage brain development. It was just so busy busy busy. I felt always exhausted. But we just did what we had to do, no other way about it. It must have been hard for a little baby to cope with this madness, too.
|first operation at 11 weeks|
Actual cornea transplant took place when she was 11 weeks old. After 5 hours of waiting, she came out of theatre with a patch on her left eye. Weak crying, still fragile from general anesthetic, she could not suck on my breast despite having had nothing for the last 9 hours. I held her with a relief and desperate hope of success. Follow up of the surgery was intense. She had to have six different eye drops all day long to prevent infection, inflammation and mostly rejection of graft. Each time taking those tapes and eye shields off, she cried with eyes tightly shut, shook her head or woke up from her sleep. Yet we had to be very careful not to force open her eye to keep the graft safe. Simple eye drops became a big challenge and disruption. One of her eye drops was to be administered every single hour! We certainly had a sleepless week to start with. That was supposed to tail off gradually but before you know it another major hiccup occurred.
Six days after the surgery, I noticed her behaviour became odd all of sudden. Jerky and irritable. High pitch crying. Breathing shallow. I first thought something was wrong with her heart. Violent sickness and diarrhea in a matter of 10 minutes, her condition worsened. I panicky rang 999. By the time the ambulance arrived, she was already pale and irresponsive very flat. As soon as we arrived at hospital, she was given strong antibiotics. First 48 hour in the hospital, she was moaning and groaning, did not sleep at all. Horrible to watch your daughter in such a pain. All we could do was holding her hands from the side of high dependency bed. I desperately prayed for her recovery. Next day we were told that she had Ecoli septicemia (blood poisoning). My heart sank. Why her? Why she has to go through with one after another? The cause and source were unknown, but because she was immunosuppressant due to the steroid she was taking for her graft, it probably could not fight against. She ended up staying at hospital for 10 days until she slowly slowly got better. Doctor told us we caught her early.
(Dear all mothers: if you do not know the symptoms of this deadly illness, please do be aware this. and never ever wait. call ambulance immediately.)
Since being back home, although she has recovered from the trauma, she had stopped smiling for quite sometimes, which was rather sad. In late October, she had another surgery on her right eye. This time was not a transplant. Instead of taking another risk of losing the right eye whilst left eye hasn’t stablised yet, her pupil was enlarged by cutting her iris partially in order to get as maximum light as possible and for brain to develop. The operation went well, but both eyes will continue to be closely monitored at the hospital regularly and controlled by medication, as rejection could occur anytime. Poor little girl still has to cope with this ongoing madness.
To me, everyday was just about surviving. I used to burst into tears. I used to feel sad watching other mothers smiling at their babies whilst they were looking at their mother’s face. I used to feel that I wish I had a normal motherhood. But all of that somehow has disappeared with time. We have managed to come this far. My daughter is 5 month old now. Both her eyes are doing well so far and the good news is that she has started to see things! Her smiles, coos, gurgle and all of the noises she makes have made me realise I could enjoy my motherhood. She will continue to have a difficult time, develop slower than normal babies, and more operations to come. Nevertheless, our little fighter continues to bring sunshine into our heart and that has never changed since she was born.
|5 month today. her smile is back.|
Thank you for reading this far. If you can share your experience or advice, please do. Or simply wish us a good 2014! We are really looking forward to it after having such a roller coaster year!
Wishing you all a wonderful Christmas and happy 2014 too! xm
7 December 2013
Another surprise arrived for Sabrina that totally made us smile. Her pretty face drawn by Japanese illustrator Yu Shichiji and a beautiful hat knitted by her mum and artist Yoshie Shichiji. Yoshie dyes all her yarns organically and this one is carmine. What a gorgeous colour! Thank you so much both! (click names to view their wonderful work)
Thank you for your kind messages on the previous post.
Your encouragement made me feel strong. I am ready and shall share with you soon. Hope you can come back. Thanks again. xm
15 October 2013
bird people, people bird… (look here)
utterly distinctive postage and present from Claire Loder has arrived to my daughter Sabrina. though she won’t be handling it yet! made us smile. thank you Claire.
* * * * * *
so long no blog.
you may think normal motherhood would probably be the reason, but for us, lots more than that.
lots lots happened since my daughter was born.
good and bad.
not sure how to write about it.
not sure if i want to write about it.
but hopefully will do, one day. when i’m ready.
in the meantime, just to say hello, we are still here, surviving.
hoping things get better one day. xm
1 August 2013
This summer has been lots of good weather unlike last one. Hence our vegetable patch and flower borders are blooming nicely. Such a joy to collect some flowers and fresh vegetables for our table. The photo is nigella, camomile and yellow courgettes. xm
25 July 2013
July has come and is about to go. Time went incredibly quick. No time for blog at all but just wanted to come and say hello to you with our little one, Sabrina.
We are so thankful for all those warm messages, cards and gifts from our friends and family. Slow recovery from C-section, beast feeding resume, battling with sleepless nights… but she brings sunshine to our life everyday. xm