Today is my husband, Joey, and my 4th
wedding anniversary! We started dating when I was 16. At the time I
was asked to give a talk about Love in Action. It still amazes me
that the young man I was dating when I wrote this is now my
husband!
Enjoy!
Love. Action. Two of the most common
and simple words. They’re easy to pronounce, and easy to use. But
when you stop and think about it, Love. What is love? Is it a feeling
you can experience in one moment, and then an instant later, that
same feeling just fades away again. Love is a choice. You choose to
love a person. You choose to give unconditionally to a person without
needing something in return. Action. When you put something into
action, it starts to move, puts something in motion. Actions are
constantly happening, in everything you do, or don’t do. When you
put love into action, you truly are able to give completely of
yourself for the sole benefit of someone else.
Christian love is not in search of that
high you get off of someone, or the excitement of “falling in
love.” Love doesn’t just come to you, you have to work at it. You
have to choose to love. You have to choose to give. You choose to
sacrifice. Christ loves us so much. He gives of himself so that we
would have someone to turn to. He tries to be our friend. Just as we
should love people who don’t like us, he loves us even when we
ignore him. When we don’t want to love him back. When we turn
around and refuse to answer to him. We love Christ when we love each
other. When we are able to give of ourselves, Christ sees that, and
sees you giving yourself to him. Even just with a smile or having
lunch with someone and spending time talking and listening. So if
this is true, then one of the most evident ways to see and feel
Christ’s love and Christian love, is to look into ourselves and see
how we choose to love, or even not love, every other person. You can
also look around and see how other people give of themselves to show
you Christian love and Christ’s love in each of our own lives.
A few months after my boyfriend, Joey,
and I started dating, a side of my family, a part of me, showed, that
I was hoping would have waited a little longer. It’s not that I was
ashamed of my family; it was that people often get scared of what
goes on. There are eight of us kids in the family, me being the
oldest, so there are ten of us in my house. Four out of my five
brothers are in wheelchairs. Even after 16 years, the doctors still
don’t have a name for what my brothers have. As of now, there is
not a condition that is already known that matches with the blood and
tissue tests that have been done. They find that it has something to
do with a muscular degenerative disorder, meaning that as the years
go by they are able to gain muscle, but once they lose the muscle
that they have gained, they can’t get it back. So, when they get
sick and lose a skill, it is very hard, nearly impossible, for them
to get it back. The three oldest, Michael, Christopher, and Daniel
all are fed through a tube that leads directly to their stomach
called a G-tube because their throat muscles are weakening and they
have trouble swallowing. They can make sounds and somewhat
communicate, but unless you know them well, it’s really hard to.
Michael, who is 16 and the oldest of the boys, can still sit in his
wheelchair, but often he is tired or sick, so we have a bed in our
living room that he can lay down in and still be with the family.
Christopher, who is 14, is probably the strongest of the three older
boys. He can still eat some types of food and he can drink soft
drinks and water in small sips. He has a strong upper body so he is
able to sit fairly easy in his wheelchair. Daniel, who is 12, is
probably the worst off of the kids. Along with everything else, he
always has to be lying down and has a trach in his throat to help him
breathe. This helps so that if he has a problem, they can have easier
access to his lungs. We have another bed in our living room next to
Michael’s that he is always in when he is at home. His wheelchair
is also specially made so that he can lay down when we go places.
After Daniel there is Josh and Elizabeth who don’t have any
physical disabilities, similar to me. After them comes Simon who is
almost 5. He is in a wheelchair that he just recently got earlier
this month. He crawls around the house and can walk in his walker.
His sidekick is the youngest, Gianna, who just turned one and will
probably end up being a lot like me. She’s just learning to walk,
but ever since she has started to hold on to things and pull herself
to start walking, Simon has started trying to pull himself up to
stand, but hasn’t been able to stand by himself yet. So, as you can
probably picture, there often are wheelchairs and medical supplies
and tables and toys for the younger kids all over the place. And on
top of that, the sounds of all the machines and alarms that the boys
have are going on and off constantly.
This is what I have grown up with, this
is what my cousins and little brother and sisters have grown up with,
so we are used to it. Many of the guys I know would have been gone
after they met my family, much less stay and actually learn how to
take care of them. Joey never made me feel like I wasn’t good
enough or that my family was too different. He embraced me and my
family as we are. He makes my brothers and sisters feel like they are
the most important thing to him. He makes sure, on his own, to go and
talk to the kids, and play games and laugh with them, just like he
would if they were able to walk and talk. He doesn’t care what they
look like or whether or not they can play football with him. He plays
ball with Christopher, makes jokes and plays “nurse” to make
Michael and Daniel laugh at his craziness. He does anything and
everything he can think of to communicate and sometimes he just sits
and hangs out with them.
When I see him interacting with the
boys, it gives me encouragement to continue to do everything that I
do. He makes me realize that I have a choice about how much I help,
and his actions remind me of what a special relationship I have with
each one of my siblings.
Realistically though, we often fail at
loving each other and people we don’t like. But when we fail, it
means that we need to love ourselves enough to forgive and let
ourselves move on and not dwell on it. There have been times where
I’ve failed to love my family. There are times, when instead of
going and helping my parents with my brothers, I just try to avoid
being seen, or just say “I am too busy.” After I do this, I feel
bad. I start to think, what if they think that I don’t care about
them or love them anymore. But then there are the times when I go to
the hospital to pick up their medications and drive the medications
home before I can go and do other things. I know that it’s the
right thing to do, but it’s hard because it often means changing
plans, or making an extra detour when I would rather just go home.
But, as hard as it is to drive that extra place, I know it’s better
because that means that my brothers will hopefully get better and I
will be able to spend more time with them. And of course, the bonus
is that smile I get when I get home and go up to Michael or Daniel
and say, “Look what I got guys, your medications.” And then stick
out my hand for a payment, and they just laugh at me with thankful
eyes.
A few years back, when the three older
boys got g-tubes to be fed through their stomachs, I didn’t want to
eat either. I had the attitude that, if they couldn’t taste the
food, well then I didn’t need to eat either. I didn’t want
anything to do with food or eating. I would eat little food and that
was really bad for my health. During this time, I failed to love my
brothers because I was unable to accept them as they now would be.
And since I couldn’t change it, I needed to be more like them, and
sacrificed my health because I felt bad for them. I also failed to
love myself. I failed to look at what I needed to do to make sure
that I was healthy. I wanted their disability too because, to me it
felt like being healthy was too painful. I didn’t want to be
healthy; I wanted to go through what they went through. If I would
have really loved them and myself, then I would have been able to see
them as they are, be grateful that they were still in my life and
also be able to take care of myself so that I could be there for
them.
When you really love someone, it takes
so much work and so much effort. It takes time and sacrifice. You
think for the benefit of the other person. You live to make sure that
the other person has everything that you can give them. To truly love
someone is probably one of the hardest things we could ever give, yet
we receive the most rewarding feelings that we could have ever
received.
There’s been many times that I
couldn’t hang out with my friends or do something I wanted to do on
a day off because my parents planned for me to be home to watch the
younger kids while they went to meetings or doctors appointments for
the boys.
One example is that last week, my
mother told me that I couldn’t do anything the Monday morning that
we had off because of a doctors appointment. I figured that I would
just have to stay home and watch the younger kids like normal. What I
didn’t realize is that this doctor’s appointment for the boys
meant that I would have to do something at the doctors too. After 16
years of trying to find someone willing to work on my family’s
case, and after going to doctor after doctor, we found one doctor
eager to work with us and take our case on. A doctor from UCLA came
down to my house to take blood from everyone in my family. All ten of
us. They wanted to do research on my family to see if there is a
difference in the DNA and analyzing the DNA to see if that could open
up any more doors or ideas to find out what is wrong and how we can
help my brothers. Now overnight I too became a “research project.”
Normally, I have to be strong for my brothers. This time I had to be
strong for everyone. Of course, we won’t get the results any time
soon. We might never get a result. But it’s that kind of sacrifice
of time and self that we put into trying to help my brothers that
shows love in action.
But the love doesn’t only have
negatives. In my family, since we used to have three, now four,
wheelchairs, it’s hard to get around. When it would normally take
5mins for a family to get in the car, it takes mine 30. When Joey and
I first started dating, he couldn’t understand Simon that well at
all. He started to ask him a question and if the answer was yes he
told Simon to raise his hand. When I saw the connection between the
two, it was overwhelming. Now we all just say, “Simon raise your
hand if..” Other times, when we’re at Sea World watching one of
the shows or going through one of the exhibits, the sheer look of joy
and happiness on Christopher’s face makes me realize that just to
see him that happy is worth everything I’ve gone through. When I
see Daniel doing better medically, it gives me hope and excitement
for what he will be able to do in the future. Experiences like these
show me that what you sacrifice will be given back to you a thousand
fold.
When you participate in what other
people care about and you show sincere interest, you are showing your
love and respect for that person. It’s a simple act of compassion
and care towards others. The result could be gaining a new friend, or
gaining someone you can trust, but even if it seems like there’s no
result, there is a part of you that will always remember what you
gave.
My brothers, even when they die,
whether it is sooner or later, will always be there for me. They will
always be the people who showed me how to love, how to be happy, how
to trust. I am given the best reward I could ever hope for. I am
given sincere love, sincere trust. Even if they can’t tell me in
words thank you or I love you, a simple smile or kiss on the cheek
from them tells me that they’ll always love me. No matter what
happens or what I become. They’ll always love me.
*Notes: Since I wrote this back in 2007, my parents had a 9th child (my youngest sister) in 2008, My brother, Michael passed away in October 2009, Joe and I got married in Nov 2009, Joe and I have two wonderful children, a son in 2011 and a daughter in 2013, and my brother, Daniel, passed away in April 2013. God Bless!
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