I have fantasized about running away. Just packing it all up and moving to some corner of the world, away from all my family. Why? Because I want no one else’s responsibilities but my own. My personal responsibilities are enough. On days when some dramatic scene unfolds, I fantasize about knowing what it feels like to only have to consider my needs…what it’s like to not have the drama that sometimes happens when you have a sibling with special needs.
What it feels like to not have to constantly worry about your sibling and what will happen when you are no longer around. What it feels like to only be financially responsible for yourself. These days of desiring escape come and go…so far, I haven’t been able to make a run for it…too much guilt would pursue me…it would be like trying to run from my own shadow.
Caregiver: Alicia Country: Jamaica
I understand your point, but let me say this: would running away make things easier? I mean with the following: you’re indeed on your own, you do what you want, but you have no support and a family that is very worried where you are. Again, I understand the point, but this is a radical thought.
Hi Emmanuel
Thanks for sharing your thoughts. I agree it’s a radical thought, but sometimes, especially when you are in the moment when you are really stressed and fed up, you just feel like leaving it all behind would fix things…but it probably would not.
Hello Alicia,
Although I do not have any siblings nor have I had to take on the responsibility by the sounds you have, I do feel like I understand what you are feeling. A person with Down Syndrome requires a lot of attention which takes away freedom of time alone from the ability of those taking care of this person.
What you are feeling is completely natural and actually healthy to feel it. I admire your strength and courage in taking on the responsibility of watching over your sibling.
Just a thought, and please forgive me if it is out of line. Would it be possible to arrange for time away like short trips to a area near where you live? Overnight? Something like that might help you feel like you have a little less responsibility and are able to enjoy your life doing things you want to do on your own?
I personally have a hard time with this myself having two young children. My daughter has been away from my wife and myself maybe less than 5 nights her whole life until recently and she is now almost 8 years old. I understand the guilty that comes with taking time for yourself, feeling like I should be with my children and in your case your sibling.
Appreciate you sharing your story,
Proud papa of two,
Jody
Hi Jody,
Thank you so much for taking the time to read and respond to this post. You do understand. Your idea of getting away for a little while is great, thank you for suggesting it. I wish you and your family all the happiness in the world!
Cheers!
At one point in time, most people would have considered running away from all their worries and pains into eternal freedom from having to care for anybody. But, that does not make us who we are. I do believe that whatever life toss at me, I will stand fully and fight to conquer it because only then can I stand truly victorious.
Here’s a suggestion…try looking at it this way: There may have been several times that you broke down to cry and scream and other times yelped in pain for freedom. But later on, you can say confidently that you’ve fought bravely once and will still do it over and over again not because of you but because of your sister with DS.
Hi RoDarrick,
Thank you for taking the time to share your thoughts. Maybe you’re right, in that, a change of perspective may truly help.
Cheers!
I feel for you and people that have to take care of special needs children. I have 3 persons with special needs in my extended family but luckily none in my immediate family. It is very hard for them and sometimes other people need to help out every once in a while. Where would you run off to if you could get away and who would you get to take care of your sibling?
Hi Jon,
Thanks for your understanding and for your very sobering questions at the end of your comment…indeed, who would I get to take care of her if I left, because worry would kill me if I thought she wasn’t being taken care of.
Thank you for sharing your feelings. It takes courage to talk about how you feel. I can’t imagine your frustrations from a first person perspective but your honesty and bravery are remarkable. You’re so right about you’re shadow following you if you sprinted away, however I do hope that some short term escapes may be possible.
Hi TimMoto,
Thanks for taking the time to read my experience and thank you for caring.
I have the experience of having family members with significant physical and mental disabilities and can relate to your feelings. For a number of years, I managed group homes for severely and profoundly handicapped people many of whom had behavior problems including aggression, self-abuse, and very disturbing attention-getting behaviors. The feeling of wanting to escape the screaming, head-banging and throwing of feces is something I knew well. Venting about it is a good start and maybe that is what you are doing in your post. You could get professional counseling, which I imagine you have done. Programming in escape time to a completely different environment would help. Sharing the burden with family or hired professionals is an option. I’m sure you have considered all of these. Good luck to you.
Hi j52powell,
I am happy that you can relate. Yes, I am getting counselling. I do go out and “escape”, which helps a lot and my family does help…all great suggestions from you.
Thanks!