Ever since Marisa was diagnosed, I couldn't leave her. I'd only leave when there's someone I completely trust who would wait for her. The list of people I trusted with Marisa was very very short. I had this thing that I was the only one that could take care of her. I was very kiasu. Also i think I feared that if I left her she might die while I was away. The never-ending fear of what could happen while I was away. That lasted her whole life I think. It's an awful feeling. Because of that , the question of whether we were allowed some 'me' time was generally a no. The feeling of failure and guilt sits right at the top of our emotions , unconsciously blaming ourselves for our child's illness. Genetically did he/she get it from me? Did I eat too much GMO food while i was pregnant? Did we expose her to some radiation that we were not aware off? Was it the mobile phone? Yes, questions that go through our head. The question is WHERE DID WE FAIL? WE didn't but it certainly didn't stop us feeling that way. The guilt pushes us to be stronger , work harder and refusing some 'ME' time as we feel it's not our right to have any.
I feel that I'm selfish in some ways. I moved my kids out of my room by the time they're 3 or 4. I valued my individuality knowing that if I lost it, i would lose me. Marisa moved out slightly later . I think she was about 6 years old. I set up a room for both her and Mazhar. We always had the monitor on in case she needed anything. Rooming in with us was not comfortable for her and I noticed she too liked her own space where I'm not breathing down her neck. I can imagine her thinking of me as the most irritating mum and never saying it. She was happier in her own room. She chose everything herself . Bedsheets, wall colours, pictures and arrangement of her room. It was hers. Even though she was ill, I try not take her individuality from her. She must be like any other kids. It was a bit tiring for me as at night I would have to walk back and forth from my room to hers but I think it was worth it. Another thing that was good was that Mazeed and I had our ME time where we watched movies and just talked after she slept. Well, I talk . He listens. I needed that. Even though Marisa and I did have some space I'm still adjusting to the fact that I have more time to myself now. Time that I'm not sure how i should do with . For years it was always Marisa and minimal Me time that now I'm trying to figure what I'm supposed to do with my me time.
I had a routine of bathing , feeding , chatting with Marisa. It was routine and in some ways very scheduled as I had to find time to help the other kids as well. After she passed and the other kids went back to school and we resumed back to our daily activities, I wasn't sure what to do. I felt lost and wondered what should I do with the time I have now. It used to be only at night but then I have the whole day What was I suppose to do? I forgot how to call up friends and just chat. I felt awkward and realised I had to learn and start new. Have new goals. do all the things I've always wanted to do. The scary thing was that I didn't know what I wanted anymore as all I did was take care of the kids. I had ME time to watch movies and talk to Mazeed but I had no real goals or plans.
I started small by meeting friends for lunch, I focused on my online business and I listed all the things I've always wanted to do. Not a long list but it's a start. Guilt came with the plans I had. It felt like an 'After Marisa' list that i had hidden in my head. I will always remember what my mum told me a few weeks after Marisa passed. "Adik, Allah knows you are tired and you've taken care of Marisa for a long time. This is your time. " She's right. I just didn't know where to start.
Three years on and I'm still figuring out what I should do. I have a daily goal. Short and easy ones so at then end of the day it would seem that i achieved something. I keep busy, I run,I learned how to sew my own baju kurung, I went on several short holidays with Mazeed , I read more now and yes, I managed to write a book on Marisa. Some of the list has been ticked off with many more to go. It is not easy. I told myself that it's not going to be easy but I must move on with her in my memory. There's not a day that passes without me thinking of what she'd be like if she was around, what we'd do if it was at particular time and all the things she was. She's Marisa. My child who bravely fought brain tumour. I'm Marhaini, a mum of a beautiful young lady who died of brain tumour. Two people who Allah put together to make us who and what we are. Feeling blessed always. Still adapting to what I should do with my Me time and praying that what I do with it will be filled with goodness and kindness. It takes time and I'm giving me time.