Thursday, 6 August 2020

"Mommy, I can't see" - Lazy Eye (Amblyopia) & Severe Myopia


Not a post I wanted to write because I struggled to come to terms with what was happening. It's been a month that I've been hush hush about LittleLim's condition. I didn't feel ready to share it publicly and I just shared it with a handful of really close friends. I didn't tell family too because I wasn't ready to deal with the questions, regardless of how meaningful the intent was yet. When I first found out, it took me a week before I told close friends because I just didn't want to accept it. But here we are, one month in. LittleLim has been a trooper and I've had time to deal with my feelings. 

"Mrs. Lim, LittleLim is squinting a lot in class." 

LittleLim's class teacher told me this last year and I thought nothing of it. Why? Because LittleLim never complained about having poor vision, she never squinted in our presence and I just chalked it down to "bad habits". It wasn't until this year while having lunch with my aunt who is also a nurse. My aunt told me LittleLim's eye looked a little abnormal and she suspected it could be a "squint" or "crossed eye". She told me to make an appointment with an Ophthalmologist the soonest possible. And then MCO was implemented and I forgot all about it.

It wasn't until months later when LittleLim told me "Mommy, I can't see" that I remembered. I tested her right away - close one eye, how many fingers do you see? "Mommy, I can't see." Moves closer, how many fingers now? "Mommy, I can't see." Moves even closer, how many fingers now? She squints. Two. I was very near to her now and alarm bells rang in my head. This is NOT normal. I called the International Specialist Eye Center (ISEC) Mid Valley to schedule an appointment. My whole family has been going to ISEC for all our eye problems and it was a no brainer to bring LittleLim there because they had all my family medical history on hand. LittleLim was scheduled to see Dr Choong who was a specialist in pediatric eyecare.

The Eye Check 

I scheduled for my appointment the same day so that LittleLim could do all the preliminary checks with me as well and she could see what I did and wouldn't feel so afraid. That was the best decision ever as it helped with her nerves. Then it was my turn to get my eyes checked with the machine and Dr.Fang was so nice to let LittleLim sit in on the examination so she could see what usually happens during an eye check. 

Soon it was LittleLim's turn with Dr.Choong. Dr.Choong was very gentle and very warm towards LittleLim. She instantly felt comfortable in his presence and the nurses were all very smiley and respectful. Dr.Choong talked her through most of the examinations he was doing so that she knew what was happening and would not be afraid. A few eye checks and tests and we were given the diagnosis. It was not a squint. "I am surprised she is still walking and not bumping into things!" Dr.Choong exclaimed. At -675 / -350 she was diagnosed with Amblyopia (lazy eye) and severy Myopia (short-sightedness). 

Amblyopia & Severe Myopia

Hereditary. She was born with it and because we did not catch it early, it deteriorated over time which explains the severity. Screen time does not cause this much increment in power at her age. 

This is why children should go for yearly eye checks once they turn three. Even earlier if you notice any abnormalities. For LittleLim, it wasn't very obvious. There were moments growing up that suggested a squint but it was so mild that sometimes it felt like I was imagining it. On top of that she never once complained she couldn't see until that very first time she said: "Mommy, I can't see". 

Amblyopia (Lazy Eye) is different from Strabismus (Crossed eye). Basically, the difference is : lazy eye affects eyesight and crossed eye is the misalignment of the eyes. Which means lazy eye always comes with sight problems. LittleLim's case is considered severe because myopia at -1000 is dangerous as her risk for other eye problems increases tremendously. Because I have a family history of glaucoma as well, her risk is even higher now and she has to be monitored closely for that as well. 

Treatment

Unfortunately, there is no cure for Myopia. LittleLim will have this for her whole life or until she is old enough to get laser treatment for her myopia. Thankfully medicine and technology have come a long way. LittleLim has been put on Atropine eye drops every night to help reduce the rate of deterioration. She also has to wear glasses to correct her vision. We paid David, our regular optometrist (MOG) at Curve a visit to get her glasses. We told David to give her the best and the best he did give. After much research and discussion, we ended up getting LittleLim the Zeiss Myokids lenses - with active control, blue light and uv protection to help control her myopia.

Lazy eye, on the other hand, can be corrected especially with early detection. LittleLim has to do eye training using eye patches for 2 hours everyday. Placing an eye patch over the good eye and doing near-sighted activities like colouring, joining dots, stacking legos etc. so that her weak eye is forced to work harder and communicate with the brain. We managed to get some really fun eye patches from Shoppee and LittleLim loves it because she gets to match her outfits to her patches. I learnt that it is NOT easy at all. The first time she wore it she struggled with something as simple as colouring within the lines which she usually has no problems with when using both eyes. She also struggled with walking in a straight line because she couldn't see the line. It's small things like this that we take for granted with two good eyes. 

I'm so thankful we have the means to give her the best treatments available. We are considering Ortho-K once she is able to take proper responsibility for her treatments and if she wants to do it. 

Involvement

Right from the beginning, we have never hidden from our kids anything about themselves. We were not going to start now. From the moment LittleLim said "Mommy, I can't see" we had involved her and told her everything about her condition. From the eye doctor to the treatments. We wanted her to have autonomy over her body. We didn't push anything on her. We just told her what was required and we allowed her to make decisions - what colour and shape her frames would be, what time to put the eye drops, the design of the eye patches, what activity she wanted to do and to take note of improvements and difficulties, and to feel free to ask any questions that may arise. Since day one she has stepped up and taken control of her treatment. As her parent I feel so proud of her and how she has been so mature about this whole thing. LittleLim loved being involved, to be seen and heard especially when it comes to something so personal and serious like her health. Her voice matters and I'm glad we managed to give that to her.


Feelings

I broke down. Cried like a baby. Hated myself. Hated this thing that was hiding in our DNAs. When I saw her wearing her glasses and eye patch I broke down and felt so sad. I felt like I've let her down. It was irrational, I know. But my logic and feelings were not seeing eye to eye. I grieved. Some days I still blame myself even though I know, I know, it's not my fault or anyone's fault. I know it's not something any parent would purposely wish on their child. I know it's not something I did or didn't do. I know that LittleLim was BORN with it. 

I still felt the guilt of bringing my child into the world and putting her through all these diseases that came from our DNAs. I don't really know how to explain it without sounding overdramatic. Perhaps retrospectively, I was overreacting from the weight of what was happening. I felt that I had put a sentence on my own child just because I wanted her. I felt that I had her irresponsibly and not checking what kind of hereditary illnesses that lurked in my DNA. I felt unprepared when I found out. And I just felt like I've failed my child. 

I'm thankful for my community. I'm thankful for my friends. For the encouragement and the stories shared with me about their own journey and how they became strong women who overcame their own sight problems. I think it's a parent thing and even more, a mother thing to blame ourselves even though it's not even our fault. But I know myself and I know I just had to allow myself to feel what I needed to feel. I had to let myself process this on my own time and accept it because there was no way to change what has happened. I couldn't stuff her back into my womb, I couldn't rewrite her DNA and I certainly didn't wish to NOT have her. If anything I loved her more and wanted to protect her at all costs. It was just letting myself feel those emotions and come to terms with it. 

It is what it is. As her parents, we have done everything possible to give her the best treatments. The best doctors, the best frames and lenses and best treatments available. We will continue to pray over her and to monitor her. Seeing LittleLim take charge of her condition, her treatments and loving her clear vision puts me at ease and makes it a little easier as days pass. Most of all, I'm happy that it has not shaken her confidence at all. If anything, she walks with pride and I know, she will be okay. My little girl is a fighter. 

If you're a mama and your child is going through a health issue that is caused by genetics, know this, you are not at fault. Yes, it's our DNA but it's not selfish to bring our children into the world. No one wishes for their own flesh and blood to get sick. No one! Don't blame yourself and don't let the guilt eat you. Take all the time you need to process, to grief, to feel and to accept the reality. But never let it cripple and steal from you. You can still make so many amazing memories with them. Whatever illness they're going through - it doesn't define who you are or who your kids are. Whatever they are born with, it doesn't rob you of the opportunity to make the best of every day and to create amazing moments with them while they're around. 

-Ally

TL:DR - if you're a parent, get your children's eyes checked yearly. Early detection and intervention for any eye problems is ideal. 

Resources (not sponsored)
ISEC Midvalley : Dr. Choong Yee Fong
MOG Curve: David (03-77325792)

2 comments:

  1. Thanks for sharing this story Ally. LittleLim is so lucky to have you as her mama bear and will overcome this little setback like a rockstar 💪

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    1. Thanks Kim!!! <3 And thank you for checking up on us and for always cheering us on!

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