A Moment That Changed Me
Last updated: August 2022
August is not just SMA awareness month, it is also a month when my sister passed away.
19 August 2013, a date that I will never forget. She was only 15 years old and both of us are the light for our parents. She was a patient with spinal muscular atrophy. Both of us were diagnosed with SMA when we were little.
I knew she was getting worse
She was hospitalized for a month. I knew her condition was getting worse but I didn’t expect this. I knew it was coming, not quite as quickly as it did. I didn’t prepare myself. I never thought this was gonna happen.
I still remember it was during a fasting month. We had a breakfasting at the hospital. It’s just the four of us. I brought Hainanese chicken chop, it was her favorite food. with the hope that she would at least take a bite. After a few bites, she said, “I’m full”. I knew she was not full. She just couldn’t eat anymore. I wanted to cry but I didn't want them to see it. I tried my best to hold my tears in front of my parents.
That night the hospital management let the four of us stay at the hospital. It was a few days before she passed away.
Receiving the hard news
On the day itself, I received a call from my dad. I was with my grandparents. He broke the news of my late sister. She passed away at 7.05 pm. I was in disbelief. Not until I see her on the hospital bed.
I feel bad for not being able to be there for her last breath, I had a video call with her early in the morning before heading to college. It feels unreal. We were just having a conversation that morning.
For a little while, I didn’t speak to any friends, for fear of breaking down. I only spoke to my parents and my closest friends who accompanied me. I feel empty. Whenever it is bedtime, I would look at her bed. We used to share our bedrooms. But to see the bed empty gave me heartache.
Grief, as we all have heard, comes in waves. That’s a lie. These aren’t waves; these are gargantuan freight trains that ram into your soul, from nowhere.
Grief interfered with responsibilities
No one ever told me how I can manage to get on with life, with things that happened suddenly. I was in my final semester of college when my sister passed away. I barely focused on my assignments. I barely paid attention in class.
But going to college was the only way for me to escape from seeing my mum cry. It was not easy. I see my mum's grief for her for almost two years. Mum cried almost every day. While my dad tries to be strong. Not showing us that he is upset in front of us.
Got by with help from friends
I am lucky that my close friends realized that I wasn’t in a good state. They came to my house. Accompanying me to do my assignments. Helping me to cope with my emotional condition. Trying their best to make me feel better.
I remembered my lecturer did the same thing. They told me it’s okay to not be okay. They gave me extra time to finish my assignment and to submit it once I am ready. They even offered me a counseling session. I had a good talk with my lecturer. I told her how I felt, I feel much better after it.
Surely, the grieving process takes time. Healing happens gradually. I know it can’t be forced or hurried. My lecturer told me there is no “normal” timetable for grieving. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. I will always remind myself to let the process naturally unfold and keep on staying positive.
Nine years missing her
Nine years have passed and there was not even a day I wouldn’t think of her. We used to share a lot of things. Our birthdays are just one day apart. Which makes us closer. I cried when she passed away, I still cry today. Although I loved her dearly, I couldn't make her stay.
A golden heart stopped beating, hard-working hands at rest. I know God loves her more.
Missing you in silence,
Have you experienced neck weakness with SMA?