Read the past posts here:
- Mission: Two Weeks Without Mom
- The One Where The Autism Siblings Were Alone Together
- What I experienced with my autism sibling as his caregiver
Devina’s Final Thoughts
I’m exhausted. And I’m only 24. Every day, mostly the only thought I had was: “I cannot wait to feel that soft bed underneath my body and rest.” It’s tiring. It’s draining. And when you have no help, it’s even worse. You’re assaulted by feelings of not having enough time for anything other than your responsibility to your child and to your house. You end up feeling guilty for not having enough time. You feel alone. Sometimes you doze off on the sofa, or your eyes feel scratchy when you’re driving on Emirates Road because the monotony of that route definitely doesn’t help your sleepiness. But you do it anyway because you have to and nothing is too much for your child (in this case, my brother, but he feels like my baby most of the time!). It hits you that what you would’ve normally done only for a few years of your child’s life, you will do forever. It’s not exactly uplifting but when you sink into bed every day having gotten the job done, there’s a sense of satisfaction and the hope that when you wake up the next day, you’ll do it well, all over again. When you wake up, yeah you’re worried today is the day you’ll collapse and just not be able to do it anymore, but…you soldier on. Because this is your child. And if you don’t support him/her and don’t fight for him/her, then no one else will.
It was a nice change though in the beginning I was feeling very stressed and not getting sleep because I was constantly worrying about both my children. Then slowly I got used to it. Since every day I normally do things with and for Karan, throughout the trip I was feeling very empty, like I didn’t have anything to do. I felt lost quite a bit because of that. Even towards the end of the trip, I wasn’t getting sleep properly, not because I was worried but because I’m used to waking up all the time to check on Karan. It was nice to meet people and just go wherever I wanted without a second thought because otherwise I always have to think about what Karan will be happy with. So liberating in a way. Everything is always according to his routine, but here I was free to do as I wished. I was going out for movies, staying out for dinner with family and friends…but I think I’m so used to this life, I missed my routine too! After 16 years, because I’ve been doing everything according to him, even though I went out and did everything that is fun, I don’t miss that sense of social life I think. I was sort of waiting to get back to my routine life. But it was definitely a nice change to get a few days off.