Throwback Thursday: Love in Action

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!

Pray Without Ceasing

Every new school year, I find myself re-examining my habits. The last few years I have been teaching religious education classes at our local parish. While I'm getting ready for the new school year, getting ideas together for how I want to teach my students the beauty of the Catholic Church, I often examine what I want to leave with them. I know that one of the things that I remember most about my teachers wasn't so much what they taught but the example they gave me when they taught. Knowing this, I examine myself and how I want to grow as a person, wife, mother, sister, daughter, friend, teacher, ect in my spiritual life. One thing I constantly find myself lacking in is daily prayer. I have found that if I have a certain action that I attach a certain prayer to I tend to remember to say the prayer. So, I'm coming up with some different actions that will remind me to pray throughout the day. Things that I do every day and offering up everything I do throughout the day and night to God through prayer. Here is how I will be trying to change my prayer life, obviously I will need a lot of work (so pray for me!) in order to make it an actual routine. I know I will forget and fall many, many, many, many times, but I think that it is important to make time to always pray, and to pray without ceasing (1 Thessalonians 5:17). Sometimes it will be joint with my husband and my kids, sometimes it may just be in my heart. This way our whole family can get in the habit of praying all the time while our children our still so young.

Most of the time my son wakes me up in the morning, so when he wakes me up, we can start our day with the Sign of the Cross and a quick prayer together. For example, Thank you God for waking us up to start a new day. Please be with us and guide us in everything we do and say today.

At breakfast we say our mealtime grace, at the same time as grace we always Thank God for our family and our Godchildren/people we have sponsored for confirmation each individually by name (for example, Thank you for Mommy, Daddy, Kid 1, Kid 2, ect, Godchild/sponsored confirmed by order that they received the Sacrament). That way we are always praying for each other.

During lunch and dinner time, we say the same grace with thanking God for everyone.

Throughout the day, if I'm driving around, playing with the kids outside, or taking my kids on a walk.I try to either listen to praise music or pray the rosary. Either way, I try to keep my focus on God and figuring out what He is calling me to do according to His will.

When playing with my kids throughout the day, I can thank God for the gift of my children and that I am able to stay at home with them.

When I'm doing the dishes or cleaning, I can thank God simply for the sacrifice (those chores are by far not my favorite part of being a wife/mother) of doing something for my husband and children that will often go unnoticed, until it doesn't get done of course.

While I'm cooking dinner, I can thank God for the ability to feed my family and pray for those who do not have enough to eat that day.

If I haven't driven around or have not said/finished my rosary, right before the kids go to bed we can say a family rosary. After the initial fight of making the kids sit down and focus (which can be very difficult for a toddler), saying the rosary before bed calms them down and gets them ready to fall asleep (if they don't fall asleep during the rosary...BONUS!)

And finally before finally closing my eyes, a prayer of thanksgiving for the blessings of that day!

How do you pray without ceasing?

Ordinary Miracle

Often throughout the day we are bombarded with so many distractions. We have so much "stuff" to do. We go, go, go. Between the diaper changes and preparing meals, keeping the kids playing and entertained and keeping the house in order, working and commuting, going to school and studying, we don't stop to admire the ordinary miracles throughout the day. The single rose that just bloomed in your otherwise empty garden. The splash of clouds on a beautifully sunny day. The large tree shading a nice grassy area on a scorching hot summer day. The pounding rain that soothes your child to sleep. The clap of thunder that sends your child running into your arms for comfort. 

We let these miracles slip by without a thought. Seeing them as inconveniences. Wishing them away.

Although there are many glorious, unrepeatable miracles God has given us, there are many miracles so ordinary, we forget to thank God for these gifts. We forget to stop and smell the roses in our heavily saturated world of distractions from the truly important moments in life. Instead of embracing those moments

of your child's embrace that will be quickly outgrown, seeing each meal as one step in their growth, knowing the rain will bring forth many blessings, and feeling the warmth of the sun keeping us warm, we forget that God is showing us Himself and His love for us.

As Saint Bonaventure said, "If there is anyone who is not enlightened by this sublime magnificence of created things, he is blind. If there is anyone who, seeing all these works of God, does not praise Him, he is dumb; if there is anyone who, from so many signs, cannot perceive God, that man is foolish."

And, 

"In everything, whether it is a thing sensed or a thing known, God Himself is hidden within. "

Embrace your ordinary miracles this week and Praise God!

 

 

One in a Million

Well, actually... more like one in 800 million. But that is exactly how our family became the luckiest family.

I still remember when I was in 8^th grade and my parents sat me... and all the rest of my siblings... down for a family meeting. My parents told us that Simon, who was only about six or seven months old, has shown all of the signs of having the same challenges that three out of the four of his older brothers had. At that time, I had five brothers, four of them with disabilities, and one sister. The challenge: an Undiagnosed neuro-muscular condition... that was the name we gave it.

Fast forward about three years, and that is when Dr. Jen was introduced to us. Little did we know, Dr Jen was going to be the one to answer all the questions that we've had all these years. After many conversations, and a lot of life changes... my brother Michael passing away at 18 years old, three weeks before my wedding in 2009; and the birth of our wonderful little boy in 2011; and now... we finally are starting to have answers.

Today, for the first time we have a name for the condition my brothers have, PCH1 with SMA. The article came out today in a major medical journal named Nature Genetics and a synopsis of the findings of Dr. Jen and her team can be found online. (Click here for synopsis)

In an interview with UCLA newsroom, Dr Jen describes some of the amazing things that were accomplished with the finding of my brothers' condition. For example “ "When we began this study, mutations in the RNA exosome had not been associated with any human disease," Jen said. "Relatively little is known about the human RNA exosome. It is surprising that a gene that is expressed in every cell should have such a selective detrimental impact on the cerebellar and spinal motor neurons.”” Dr. Jen went on to say “"The discovery may lead to potential targets for treatment and in addition enhances our understanding of the biological function of the RNA exosome," said Jen. She is working with other neurologists to better define the clinical spectrum of EXOSC3-associated PCH1. "It is remarkable that all of the affected children in this family have survived beyond infancy. We are grateful for the generosity of the family in sharing their experience and participating in research to improve the lives of other children who are similarly affected," said Jen.”

(Click here for UCLA Newsroom Press Release)

There are only around 8 families in the world that have been officially diagnosed with this condition. And although I expect more people to find out they have it now that it has been discovered, it is still an extremely rare condition.

One of the only reasons they were able to discover what my brothers have so well was because my parents were so open to God's will in their lives. They were open to the challenges and the joys. They were open to the late nights and many hospital stays. They were open to traveling to France and going to Sea World. They were open to the good times and the challenging times.

If it wasn't for my parents and their willingness to allow God to continue to bless our family with ALL of my wonderful siblings, disabled or not, they would still not know the answers to this rare condition. It was only because the doctors could find all of the DNA and RNA traits that are common between all four of my disabled brothers and then go through the DNA and RNA between those common with the boys and take out the ones that are also in common with my other brother, my sisters, and I that they were able to accurately figure out what was going on with my brothers and with the other children around the world who are still alive waiting to figure out what was the root of the problem.

This is an amazing accomplishment. I am still in shock that after 21 years we finally have a name to tell people. I am finally hopeful that in my lifetime and my brothers lifetime they will be able to find something to at least slow the progression if not completely cure my brothers! What a blessing! And because of my brothers and family, there are many other conditions that will now possibly have a positive outcome because of how much the doctors are learning about my brothers' condition that they did not know about before!

Praise God! What a miracle!

Family Picture: Easter 2012

Michael & Daniel 2008

People-First Language

People-First Language - YouTube

Please watch the video before reading the rest of this post.

It is so important for people to realize how important this is. Speaking with people-first language is more than just being "correct". It is acknowledging that every person is important as a person before anything else. Whether or not a person has a disability does not change the fact that they are a person. People often talk to me about my brothers as if they are not there right in front of them. I always make a point to include them in the conversation we're having. They understand what people are saying, they know what is going on around them. They like being included, not being talked about in the third-person when they are right there. Yes, they may need a little help from some of us who know them better to communicate back, but they know exactly what is going on around them. They know when you are upset over something. They answer questions. They listen. They give advice. They can talk with special computers called a dynavox. They love sports and art. They love music and movies. They know when you are talking about them. So does everyone else, including people who have a disability or special need or handicap. I hope that this video helps more people understand how important it is to make sure you put the person first, not just in your language, but also when you get to know them. Someone might have a disability, but they can also be defined by other things like "Angel Baseball Fan" as well. Get to know the person and all the things that describe them, not just the disability, because NO ONE is just a disability.

CHOC Walk: Save the Princes and Princesses

Ever since I can remember, CHOC (Children's Hospital of Orange County) has been a part of my families life. I have so many memories of spending even months at a time at the hospital. My brothers and sisters have all experienced months like that also. And the beautiful thing about CHOC is they not only help people recover, but they also help with the emotional care of those in the hospitals AND their families, those who have recovered, and those who God has already called to be with Him. They also don't just take care of you at the hospital, but they also are there for their patients and the families of their patients after they have left the hospital.

I have a friend named Kelly Linskey. We went to High School together. She is actually one of the first friends I ever made in high school and she is an incredible woman! She is doing the CHOC walk to help raise money for CHOC hospital. An amazing woman, even from a young age, Kelly was diagnosed with leukemia when she was five years old. After being treated for two years at CHOC, she went into remission and has been in remission for 18 years now! PRAISE GOD!

Kelly told me:

I am so thankful for the life I've had and the future that is still ahead of me and I would not be so lucky if it weren't for CHOC. I think my dad said it best when he donated, "Hopefully we are helping another Dad save his Little Princess."

So this (walk) is for all the little prince and princesses and their families who are struggling physically, emotionally, financially. And of course for Children's Hospital of Orange County, they offer a place of refuge and safety when kids are going through something that very few their age understand. CHOC offers hope and fights every day to give kids a chance for tomorrow. 

Many thanks for any contributions made.

I know CHOC hospital is very close to my heart! So please help all those who have had CHOC as a part of their lives and help all those who will need CHOC's care in the future.

The CHOC Walk in the Park is on Sunday, October 16th at Disneyland!

Please help support her at www.chocwalk.net/kellylinskey !
Any amount would be an amazing contribution! Please contribute by Oct. 15th!!!
And just like the old African proverb says, "It takes a village to raise a child." I think it also takes a village to save a child!

Unpacking your Life

When you have to pack everything up and move, and then unpack everything again, it's a great time to start over. But, you don't have to pick up and move to do that. And although it is important to keep memories of past events... it's also important to clear out your life every once in a while. 

We are constantly being bombarded from ads to let us know that we are missing something in our life... and guess what! If we buy the product they are telling us about, life will be fabulous! But, are we really? 

We can't watch a television show, listen to the radio, even walk down the street, without being reminded of all the things that "we are missing out on." 

Sometimes it's better to get rid of things... If we keep grabbing at things all the time, where is it all going to go? Eventually we will be so caught up in the things around us, we will forget about the people around us. 

There's a song called More Beautiful You by Jonny Diaz. The chorus goes like this:

"There could never be a more beautiful youDon't buy the lies disguises and hoops they make you jump throughYou were made to fill a purpose that only you could doSo there could never be a more beautiful you"

When I heard this song, I thought it was a great reminder of who we are really called to be. We were made for a purpose... made to be beautiful. We don't need everything we see in the commercials to make ourselves better... We need to start from the inside. Being beautiful starts with what people see when they watch you. It could be a simple smile across the aisle at a grocery store to a long conversation with someone you haven't seen in a while. Stuff does not fulfill a person. People make things in our life worth having.