Papa's Day

"It's times like these you learn to love again," these lyrics could not be more true in today's situation. Thank you, Foo Fighters.

Why is it that we as a society need to dedicate one day out of the 365 days to honor the ones who brought us into this world? I think it's rather silly to be honest. We aren't guaranteed a week from today let alone an hour from this very second. So why is it that we should wait to applaud and thank the ones who are responsible for making you, you?

It's because we forget. We forget our guardians have given us and shown us a way of life. Whether the situation be good or bad, we've in some way have been educated on who we are or who we never wish to become. So why are we waiting to say thank you or I love you? There's one result to our life on this earth and, unfortunately, it's death. (Harsh. I know, but hey, I'm not saying anything shy of the truth.) Tomorrow  might be too late people! Although Father's Day is over it still isn't too late. Be the person you'd want your children to be.

Don't wait for times like these to learn to love again. It may be RUFF to suck up your pride and ego but one day you'll thank yourself for it.

Now go enjoy this beautiful summer day Chicago!!!!

Xo- Stephanie and Alexa

P.S HAPPY FATHERS DAY to all the wonderful fathers in the world!
(It's contradicting we know. Just got with it)  

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.

Our RUFF journey pt 1!

Good morning Readers!

Alexa and I (Stephanie) want to first say how grateful we are for all of the support! Like really, this is so incredibly crazy to see our dreams happening before us. We thought we would kick off the blog by giving you some background on us and our family!

Let's meet the fam 

Mom- Rose

Dad- Steve

Oldest brother-Jonathon (25)

Myself- Stephanie (23)

Sister-Alexa (19)

Youngest brother- Anthony (11)

Eleven years ago things were very different in our household. Back when we lived in the good ole Elmwood park, we had the life. Not in the oh-so-rich-with-money life. The kind of life money couldn't buy. We were rich off of pure, genuine happiness. Things were easy. We both danced and the only concern we had was making it big enough to become prima ballerinas. Ugh. I lived for the countless hours we spent in the studio, or the early morning Nutcracker rehearsals. We were always doing something. Even through our busy dance schedules we had to squeeze in time the soccer tournaments we went to for Jonathon. We could have sworn that we was going to become the next great face in the soccer world. But everything came to a very quick and sudden halt. 

We moved out West to a town called Carol Stream. This meant NEW everything. Friends, school, house, dance studio... Life! I could never forgive my mom for pulling me away from the only thing we all new. But a few years down the road mother would spring even more life changing news on us.

A baby. "WHAT!" I (Stephanie) screamed. Gross! "Like how is that even possible," my 12-year-old self asked. (I just learned how babies were made by the way, so you could only imagine what was going on in my head.) I did what any typical tween would do. Yup. I "ran away." I made it as far as the drive way when I realized my dad was standing right behind me. He obviously ruined my plans of feeling like a desperate girl. I planned to go sit on a swing and cry... you know how the movies portray it.

(My goal)

Enough of the melodramatics. ANYWAY. Nine months went by and little baby Anthony was born. After we got over the extreme dramatization, he became everything to us. But three months into his new being he started doing something really odd. Contracting his stomach and throwing up his arms as if he was being punched. Twenty of these "things" and bloody murder cries later, we desperately awaited the doctor to return our call. The pediatrician, acting as clueless as we were, advised us to come into the office the following day.

 "He just has a lot of gas, try this, it will help." Was the typical response. We knew it wasn't right. We landed an appointment with a neurologist at Rush hospital not fast enough. These "things" were now labeled as infantile spasms, and these spasms grew in number. Twenty turned to SIXTY in one episode! Anthony was having sixty spasms per episode and up to SIX episodes a day. What were infantile spasms you may be asking? Seizures.

He was diagnosed with something called West Syndrome. An idiopathic syndrome. Meaning no reason no cause, and no trace of epilepsy in our blood-line. We had to get this under control. Seven failed medications later, we were losing all hope and money. We finally discovered what we thought was the light to the end of our tunnel. A diet call The Ketogenic Diet. An extremely strict diet. Very high fat, low carbs and low sugar. The thought behind it was Anthony's body would produce more keytones than normal making the brain concentrate mostly on that and distract it from producing the seizures.

Well it all sounds too simple to be true. The hospital screwed up the diet and Anthony's seizures were worse then ever.

At seven months old we finally found a hospital with more knowledge about the diet. They helped us get in under control and on the right track. Anthony soon became the youngest person known to stop seizing via The Ketogenic Diet. We did it! Finally! Life could calm down for a minute, right? NO.

 What I haven't mentioned yet was my dad's mom (Grandma Ruffino) was simultaneously dying slowly, but surely in a different hospital. What else could happen? Well the worst of course. Not more then a couple weeks from Anthony's last seizure, grandma Ruffino (our angle) died. Just when we thought things couldn't get any worse. It happened.

Even though this is just the beginning of our story, reliving these moments are not easy, but it reminds us that we would not be the people we are today if we hadn't been through these lows. Support means the world to people whether they verbally ask for it or not. You can change someone's day, even life, just by letting them know that their story matters. Everyone has a different way of expressing themselves, and as cliche as it may sound, a smile means the same thing in every language. Life doesn't have to be RUFF. Let's be on the same team. We challenge you to let someone know that their story counts! We can do this!!!!! 

Xoxo, the RUFF*sisters 

P.S.
This is a very BRIEF explanation of everything. We have great plans to share in detail every aspect of it all. 

Welcome To Our Lives

Dear Readers,

I know what you're thinking. A couple of girls, with a couple of words trying desperately to save the world one life at a time.. Blah blah blah.

NO. 

We are the RUFFsisters. Stephanie and Alexa Ruffino. Two twenty-something-year-olds trying to spread our stories with hopes of making at least one of you smile every single day. 

We've been through a lot in our lives, and we both had a sister epiphany (We seem to think we have twin telepathy even though we're four years apart). As we sat down in the nearest corner Starbucks sipping on our warm Chai Tea Lattes (YUM) and ate our giant warmed-up cookies (even though we're on another one of our "diets",) we came to the conclusion that we want to help people. Not in an ordinary way. We want to share our stories. The good and the bad. We want to show you all that no matter what happens in life, it can be overcome. There IS a light at the end of the tunnel. Whether you believe it or not. 

Does it come easy?

No.

Is there a such thing as a magic genie that grants you three wishes?

Absolutely not. 

Does is take hard work?

YES. 

We're here on a mission to be the light at the end of your tunnel, the sign that you so desperately ask for everyday. Follow us through our journey of life, take a peek into our past, and please... we encourage you to ask us for our advice. Because guaranteed, we've been there, done that, and helped each other through it. 

Although we may just be cyber acquaintances, we look at you (your words) as some of our own. We're the sisters you've never had. The friends you've always wanted, and the second chances you never got.

Always remember,

Life Doesn't Have to be RUFF.

Best wishes.