Sacrifice/Abnegation. The inevitable truth.

abnegation

 noun

the act of giving up something, especially something you would like to keep

sacrifice

 noun

the act of giving up something important or valuable so that you or other people can do or have something else

When you become a sibling of someone with special needs there is a certain thing you must learn. That, friends, is the act of complete selflessness. You see, when you're nine years old and still need attention, as every nine-year-old does, and can't get it, it does something to you. (It's Alexa speaking today.)

Abnegation and sacrifice become adjectives that describe who you become. 

I'm making this my topic today because yesterday I had quite the rough day. Well, you see, it's been a rough week... To say the least. 

Anthony has been seizure-free for a while. He's had a few here and there, but our family was happy to say that they went away and stayed away for roughly two months. The new medication was working, and Anthony was on his way to recovery. 

Like we said yesterday though, all good things must come to an end.

This week Anthony had four seizures in less than 24 hours. No hospitalization was required, thank goodness, but he's now on what we call a strict seizure watch. The seizures Anthony experiences are not what an average seizure looks like. He doesn't drop to the floor and shake. His are sneaky and silent. If you are not part of our family, as you are not, you wouldn't know that we was having one. 

However, we know. His breathing slows down, and he stares. Unconscious. 

Although these are slighlty better than him dropping to the floor, they can cause him to stop breathing completely. It's not unusual for his lips and face to turn purple. In fact, that happens just about every time. 

(I'm linking sacrifice to the seizures. I have a point. Don't worry.)

So here's where I come in. I got a job. Yay! It was a fantastic job. I really can't complain. I mean, who in their right mind would complain about $13/hour that required playing with children all day? Yes. I was a nanny, and I was so happy to actually earn money for myself. My plan? Not to spend it all on fast food, alcohol and parties. As I'm sure most people my age would. I was saving it all in my bank account for college. So I wouldn't have to ask my hard-working parents for a dime this year.

You see, Anthony is on a strict watch, and I am the only person home to watch him. While my parents are off at work, and my siblings are also trying to do good for themselves, I am the one left responsible to watch Anthony. 

Sacrifice. 

Giving up the money I was going to use to pay for my meals, books and living expenses in college to watch Anthony. 

Am I upset? 

I'll let you in on a little secret. I can't say I was ecstatic to talk to my employer about finding a more dependable worker; However, there's not a bone in my body that let me be upset about this. I care about Anthony more than I care about myself. That is something you learn. 

The moral of the story here is, things don't always go your way. HECK! It would be a grand day if just one thing went my way just once. But you can't let it define you. You must not let it get to you. As my boyfriend said (that great man) "Lex, just talk to me. Everything is going to be O.K., but if you hold it in, you're going to explode like a bomb." So that's how I handled it. I talked, let my anger out and calmed down. 

I know what you may be thinking, and if it is what's going through your head, then I understand. If you think I'm a little spoiled brat, mad because I have to take care of my brother, you're wrong. I was upset, but not at that. I was upset because I want to live like how you do. I want to wake up everyday and not be on my toes worrying if Anthony will make it through the day without a seizure. I want to wake up hoping that one more seizure won't happen because I know what they do to him. Every seizure hurts his brain. Every seizure slows him down. Every seizure makes him that much farther away from my "normal" cousins who are his age. That's why I was angry. 

This post is dedicated to all of you knowing what I'm going through. It's for everyone that's a sibling of a brother/sister who has special needs. I'm here telling you that it's O.K. to be angry. It's O.K. to be hurt and confused, and maybe even a little lost. What you need to learn is that sacrificing things are hard, and they may not ever become easier to handle. But, you have to learn to deal with them because, quite frankly, they are inevitable. Dealing with this makes you a great person. You are stronger than anyone else. You've seen the worst, enjoyed the best, and you need to remember that everyday. 

If you have any questions, or just need to talk, e-mail us a s.a.ruffino1923@gmail.com

Just remember, life doesn't have to be RUFF.