A few weeks ago I was having a bad day...like, a really bad day. I had really let the stress of taking six classes, working full-time, trying to figure out what the hell I'm gonna do with my life, being a broke college kid and everything else I have going on in my life really get to me. My mother picked this day to add even more onto my plate.

I was at my moms house (my parents are recently divorced) to get my little sister off the bus from school. She gets home early on Wednesdays and both my parents work full-time, so they asked me to get her off the bus and take care of her until my mom could get home from work at 2:30. This gives me just enough time to fly, (I mean, drive) to my university for my 3:05 PM class.

My little sister is fourteen years old. I already know what you're thinking — a fourteen year old can surely get off the bus by themselves, right? Not when you're a special needs kid. My little sister is special needs. She has a form of epilepsy, is nonverbal and needs full time care for things such as dressing, toileting, bathing and eating. She can walk, jump, run and even laugh infectiously, but for whatever reason she cannot speak and has the IQ of a toddler.

I didn't mind going over there to get her off the bus. Sure, it means shuffling around my day and not doing other things, but she can't take care of herself. Because of this, I really don't have a place to feel some kind of way about it. That particular afternoon she got off the bus and was having a perfectly pleasurable day, which are the days I appreciate most because when it's a bad day for her, it's a bad day for everyone.

My mom came in and was fuming about some big stressors she had going on in her life. I sat there and listened because I know sometimes we all just need to vent to someone who will listen. It's almost therapeutic and it always helps me when I am struggling with things. Then, she started a tangent on my father which annoyed me. I get that they have issues, but I don't like hearing about it because I have a pretty good relationship with them both. Maybe that's not fair, but it's how I feel on the matter.

She suddenly pivoted to my little sister and her future then she asked me a question that very nearly set me off. "What are you kids going to do when me and your father are gone, put her in an institution?"

It sounds harsh and unloving, but it's a perfectly honest and reasonable question for anyone in this position. What nearly set me off was how she asked it. She was venting and a bit worked up, so maybe that was why she possessed the coldness in her tone that she did that afternoon. But the inference in her tone implying that it was something I never think about nearly pushed me over the edge.

I wanted to flip the table and scream at her. How dare she ask me that question like it was something I don't think about every single day, every single time I see my sister, every single time I hear her name. Like I don't hate myself for even thinking about putting her in a home because I might want a family of my own without the burden of caring full-time for an adult who can't care for themselves. How dare she ask that question like I don't want to eat a freakin' bullet every time I allow myself to even have such a selfish thought. Like I don't feel disgusted with myself and feel like I would be betraying my own flesh and blood on the most intimate level by doing that.

But is it really that selfish? Is someone who has special needs really a 'burden'? Different people will give you different answers. Some much more strongly than others. All I know is everyone has a different situation than the next and no one 'special need' is the same.

I did not react quite that strongly. I know better, but now I was pissed and I let her know it. Why did she have to bring up a question that realistically I'm not gonna have to answer for another 15-20 years when I have problems that I need to figure out in the next 2-3 weeks? Why the f*** did she have to throw this on my plate today?

So I answered the question truthfully.

"Realistically, you both won't be gone for 10-20 years so I don't really know the answer to that question right now. But if something were to happen to the both of you tomorrow, we (my other two siblings and myself) would do what we have always done when s*** hits the fan; step up and handle it."

"Besides, our (referencing my siblings and I again — ages 19-22) lives are going to change so much in the next 5 years that I think it would be pointless to figure out that answer when we don't even know where we are going to end up ourselves. If I get my way, I'll be working in Europe or some other continent, my brother will be a Broadway actor or lawyer for social justice, and my other sister...well, truthfully, I don't really know what her plans are..."

I could feel myself beginning to boil over internally and decided to remove myself from the situation because it was quickly escalating, and I knew I was not going to be able to control myself if it kept going. I stormed out quickly without so much as saying goodbye.

I ripped my keys out of my jacket to unlock my car and could feel the hot tears blurring my vision before I even looked down at the door handle. I whipped the door open and threw my backpack in the passenger seat before I plopped myself behind the wheel and slammed my door closed. I sat there for a few moments trying to hold it back before I let myself break down right there in my moms driveway.

It wasn't a peaceful kind of sobbing, either. It was a nasty, blubbering slamming the steering wheel, silently screaming kind of break down.

It's a big question when you have a sibling with special needs. What are you going to do when both of your parents are gone?

Some people will tell you it's not a big question and that the answer is an easy one. "They're family. Of course I'll take care of them! How is that even a question?!"

To those people: I applaud you. Perhaps you are a far better sibling (hell, maybe a better person) than I am, but I know that for many others that question carries an immense amount of weight, and the answer is an exceptionally challenging one.

Understand something: I love my little sister. I would forfeit my life for hers in an instant. I love because even though she does not always return it, I know without a doubt she loves me too.

Can you imagine taking care of someone for their entire life and never hearing them say the words 'I love you?' Never. Not even a syllable. I know how it feels as a sibling, so I can only imagine what that pain must be like for my parents.

As I mentioned earlier my little sister can't speak. When she's in pain, she can't tell us. When she's uncomfortable, she can't tell us. When she's angry or upset, she can't say that she is...so she just screams. Not crying...full blown screaming. To go along with the screaming, she lashes out physically against anyone within striking distance by pinching, kicking and biting strong enough to leave all of us with bruises at one time or another. Can you imagine that for hours on end? Days? Weeks? Even years? Can you imagine how helpless you would feel that a loved one is in pain and no matter how hard you may try, you can't really help them because you don't know how, where or why they're in pain — and they can't tell you? Not every day is like that, but when they are, I can feel my nerve endings fraying from the years and years of nails on a chalkboard intensity that accompanies those screams.

Like I said, not every day is like that. In fact, since I returned from Italy at the beginning of the summer, she has really been very good. Some days, she is full of love, kisses, and cuddles. Some days, we get off the bus and we cuddle up together on the couch and she takes a nap in my arms. She loves to kiss her puppy Bella. Sometimes, I'll try to get her to dance with me to Jazz music in my mom's kitchen. We always give each other hugs and kisses every time we greet each other and whenever we say goodbye.

But when you're thinking about caring for a sibling that requires full-time care, there are many things to think about.

What if you want a family of your own? Can you do both? Some will say you absolutely can, and they are right...to an extent. You can have a family of your own, but your life will never be normal. It will affect your children — in some ways good, in some ways bad. There will be things that you just can't do because of the nature of their disability (it's different for every disability). Someone will always have to be home and keeping an eye out on the sibling. What if my sister were to lash out at one of my kids? Not intentionally, of course — but still, do I want to expose my children to that?

Not only that, but can I support myself, a family and my sister all in the same household? Will I ever get a break? What if I don't want that burden? How could I possibly ask any woman willing to be my wife to share in this kind of responsibility?

Some people will say that these are selfish and foolish thoughts. I can hear the blind optimists now... "How dare you think of your sibling as a burden; their special need is a gift!" If anyone ever had the ignorance to say that to my face, I'd probably hit them in the mouth.

Don't get me wrong. My sister has taught me many things, chief among them being an enormous amount of patience, responsibility and love. However, people who look on every special need as a gift don't tend to be very good listeners. I'm not saying that every human life isn't precious because every single one is. But the 'blind optimists' never seem to look past the 'special needs person'. They don't tend a large enough perspective to see the family, everyone else it might affect, and the entire situation as a whole.

The reality of it all is every disability is different. The reality is disability is not an evil word that defines people in a negative way; it only has that connotation if you allow it to. The reality is, everyone is a gift but some disabilities can be incredibly burdensome as well.

So what are the options when your siblings' care becomes your responsibility?

Well first of all, let me put the initial question to bed. You cannot 'institutionalize' people anymore. Here's what I mean.

In the state of Connecticut, once you age out the school system, adults with special needs can go to long term care centers or other places that can handle the long term care that may be associated with one disability or another. However, these are now almost exclusively private institutions (everyone's gotta make a buck, right?) and no longer state-run institutions. State institutions stopped taking new patients years ago, and the last major such facility in this state is the 'Southbury Training School' which houses approximately 270 people with severe intellectual disabilities. State legislators have been trying for years to close it because of the budgetary savings that would be realized, but have given little thought to how those people will continue to receive the care they need (a different tangent for another article).

So you have these private facilities, but what else is there? Well, in-home care...that's really it. Either you care for them yourself, relocate them to a private facility, or buy them their own house and pay for a live-in caretaker (if you have that kind of money lying around, then God bless you).

There are many other things that go into planning for adult care of a loved one with special needs. These include a Special Needs Trust and working closely with a designated attorney, a financial adviser with expertise in special needs planning (being a financial planner myself, I have begun to immerse myself in the complexities that this type of planning requires), and your state case manager.

If you are reading this and you're in a situation similar to my own and have no idea what any of those things I mentioned in the previous paragraph are, then please reach out to me and I would be happy to share more information about them, as well as connect you with people I know who provide those kinds of services.

It can be incredibly daunting to try and plan out your own future. It can be downright terrifying to try and plan out not only your own future, but someone else's, too. I know that someday that question is going to have to be answered, but I'm just not ready to make a decision just yet.

Maybe I'm still too young and too dumb. Maybe I'm just not mature enough to make that decision and handle that kind of responsibility yet. Maybe I'm just selfish for not wanting to take on that responsibility on top of having a family of my own.

I know I'm not the only person who struggles with this question and the great responsibility that it bears. To everyone else who has a special needs sibling out there... I get it.

Don't hate yourself for thinking about passing on the responsibility of their long term care to someone else for what others may deem as 'selfish reasons'. You're not a horrible person for thinking about it, and I know that even though you feel disgusted with yourself, you really shouldn't. Lord knows I do.

I know one thing for sure. Not a day goes by where I and everyone else who has a sibling like mine doesn't think about that question or the answer to it. But here's something you may not know: we think about it every day. Not just because of the burden or responsibility it may bring, but because we love our siblings and we care deeply about their lives — both present and future.