Even In Darkness God Is There

Posted 03/01/2017 by Taline Perez

February 28, 2017 I decided I was not doing much today except the mandatory drop off and pick up of my kids, pharmacy run, and the visits from the nurses, social worker, and bath aide. Of course Trader Joe’s came up, crying sessions with the girls, phone calls to see how my dad is doing, more phone calls from the nurse visits, and no nap. That’s besides the two drop by visits, homework, and constant interaction with a caretaker in my home I can’t do life without, right now. Did I say I was not doing much? What I meant was I was not going to answer calls all day long, run around planning and making arrangements, or try to figure out how to get my dad to do what he needs to do. I watched a movie with Sergio today even though he fell asleep after his medications, even though I sit there checking his face throughout the entire thing to see if I see signs of pain. It’s the best we can do. It’s beautiful. So simple and irreplaceable to sit close next to someone you love and who loves you and let time pass over you. I'm not limiting that experience to only a husband. It's one my favorite things to do and I learned how to do it well from Sergio. To be still and indulge in someone's presence.

I wish he could talk. I wish so badly he could talk, but he can’t. And none of my desires or petitions to God have a changed that. Although, even though his voice is down to a whisper now, he daily tells us girls, “I love you.” Some times the words don’t sound right but he mouths it correctly. He’s been kissing the girls hands over and over and pulling them up into his bed when he has the energy. He kisses me over and over with his eyes shut with an expression like he is in heaven. He holds my hand and doesn’t let go. All of this to say he loves us and he does not want to go, but there’s nothing we can do about it. It just sucks. The simple cherished moments are many and become more and more significant as he is awake less and less. I know it’s part of the process, but it is still hard to watch. The girls are crying more and more and aren’t sure why until we discuss all the changes and the feeling that the possibility of life ending in the body is not so far away. Even in that God is present. It is not so hard to be willing (not wanting), just willing to let go of the person you love when you see the body getting weaker and pain setting in non stop. I asked Sergio if he feels like he is getting weaker and he nodded yes. I asked him if he feels like he is getting weaker, his spirit, who he is. He said, “No.”  “ O Lord, you have examined my heart and know everything about me. You know when I sit down or stand up. You know my thoughts even when I’m far away.You see me when I travel and when I rest at home. You know everything I do. You know what I am going to say even before I say it, Lord. You go before me and follow me. You place your hand of blessing on my head. Such knowledge is too wonderful for me, too great for me to understand I can never escape from your Spirit! I can never get away from your presence! If I go up to heaven, you are there; if I go down to the grave, you are there. If I ride the wings of the morning, if I dwell by the farthest oceans, even there your hand will guide me, and your strength will support me. I could ask the darkness to hide me and the light around me to become night- but even in darkness I cannot hide from you. To you the night shines as bright as day darkness and light are the same to you.” Psalm 139:1-12

So Grateful!

Posted 02/27/2017 by Taline Perez

 I am a visual learner. I could not imagine in my mind’s eye what Friday night’s fundraiser was going to look like, even though Barbara described it to me several times. We were very sad that Sergio would not be able to go, and although I never said it out loud, I was thinking that maybe we shouldn’t go either. He’d been left behind and I thought it would be an opportunity to feel alone, without my spouse, and why do that to myself now when I will be forced to feel that later? Yes, we humans do a lot to avoid unpleasant feelings. Not to mention my exhaustion since he is on pain meds now so that means long nights as well.

But Barbara called one last time and reminded me that there would be face painting there. The night before, Nairi had shared with me that she is sad because we don’t do anything fun anymore, well we haven’t in a while. So, I gathered the girls with mixed feelings and told them we have to go to the fundraiser for an hour and then come back. 

Friday night was phenomenal for us and much longer than one hour!

God had other plans. I had just spoken to an old friend and colleague of Sergio’s after school who told me when her father died, she felt so loved and supported. For some reason that conversation freed me to just let everyone love us without guilt. That is what we felt and feel, loved and supported, and it is a blessing!

Like a modern day version of an episode from Little House on The Prairie, when the community rallies together to support a person in need or struggling. It sounds so corny, but it is happening to us! 

I have always known that Sergio was a great teacher, but of a different sort. It had nothing to do with paperwork, curriculum, or testing. His gift is relationships. He’s always had the philosophy that when a kid is loved, the other stuff falls in place. I knew he was good because the first year we got married students would knock on our door just to come by and say hi to him (shocking to me as a high school teacher because we hid our address, which car we drove, etc.), because he constantly got invited to birthday parties by students, to soccer, baseball, basketball, you name it, games, to weddings in Romania and Alabama (and on and on) from past students, because he had almost two hundred mugs in his kitchen cabinets

from students who wanted to give him something for Christmas and he told them he loved mugs so they could all afford something and be able to give him a gift, because he made sure he got to know the siblings, parents and grandparents, and some of those people became his dear friends and ultimately his goal was for kids to know that he loved them. He really did. So relational, truly enjoyed people’s company, and believed that his purpose was to influence and impact others’ lives in a positive way for whatever they needed, for some to let them know that life could be hard, but good, and that there are nice people out there. He expressed these things verbally and very intentionally lived it out. I had asked him why he thought he was who he was and he always said, “God.”

What a blessing it was to see so many of his past students telling us story after story of what he meant in their lives and what he had done for them. I truly appreciate you being willing to share your lives and knowledge about Sergio, my love with me. 

Just like he would tell the girls, “Be on the look out for good people. You can make great friends anywhere.” and there you all were on Friday night. There were tears, lots and lots on my side, and stories of going to Camp Hammer in Santa Cruz, trips to raging water, and ice cream, having a student’s favorite candy in a jar on his desk, making students feel no different than others even if there were differences, being sensitive to health problems, home problems, and personal problems. It was a good night. 

Sergio had wanted a massive birthday party in September for his 50th. His list had hundreds of people on in because he is inclusive. "Why leave someone out if you don’t have to?" was his feeling. "And why limit yourself when there are so many good people out there who enrich our lives and want to be in relationship?" He was in the hospital on his birthday. He got Happy Birthday sung to him three times that day by us, the case manager and the nurses. I have been sad about that and trying to figure out how and when to do that, but Friday might have been better. 

I was speaking to a friend tonight who is still paying off home health care costs and other medical costs seven years after the passing of her mother. I am truly, truly grateful for everything you are doing for the well being of our lives. I love our community in Whittier and beyond! Or more accurately the people who make up these communities, from our neighbors, schools, churches, and friends spread all across its almost 15 square miles, across the states and around the world. I play all of your videos to Sergio and he smiles. 

If you would like to leave a comment but are not a google+ member, you can go to her YOUCARING link and post a comment.   https://www.youcaring.com/sergio-perez-669404  OR email her at talinekorzter@gmail.com
Thanks  

MRI Results

Posted 02/24/2017 by Taline Perez
Nairi woke up Wednesday morning not wanting to go to school which is a rare rare occurrence for such an extrovert.  She followed me into the bathroom which is what she does when she wants to talk privately and said, 
“Do you think God forgot who He is? “  
“No, I don’t think so.” “What do you mean?” “ "Well,  I mean do you think He forgot the magic He can do?  I mean I know it’s not magic.  The powers He has."
"Do you think He forgot the powers he has?” 
“No, I don’t think He forgot. Why?” 
“Because He’s not healing Baba and I’m very sad about it. And mad at God.  I love Him but I’m mad too.” 
“So am I.  But He can handle it. And you can be mad at Him and love Him at the same time.” 
     Nairi is where Adriné was in August/September.  I spoke to them about the MRI results on Saturday after receiving a call from the oncologist on Friday.  I knew I was hearing half of it incorrectly as I heard the pounding of my heart getting louder and drowning out his words.  I went to an appointment with a friend on Tuesday without Sergio because we can’t transfer him and the two to three hour activity of using transportation is not feasible.  Another thing I have trouble understanding.  Transportation for the handicap,  possibly the most physically weakest population,  that takes two to three hours of waiting and driving around.  Shouldn’t they be waiting the least? It makes no sense to me.
     They were able to read 10 minutes of the MRI. The oncologist said the tumor is larger than it was before the 35 times/ 7 week radiation and chemo began. It is also blocking where the fluid flows in and out of the skull, so as a result Sergio has hydrocephalus. This causes pain as well as an array of other symptoms. “The worst of the worst.” he said.
     As options are presented to us, the girls and I have already decided that we want to be together as a family with each other in any circumstance.  My mother and grandfather both past away at home. I honestly did not know there was any other way. It can be a much needed help depending on the situation, other options.  Perhaps in our country where we don’t really see people dying of starvation,  lack of vaccines, or lack of medical technology like other places do,  we easily forget that dying is a part of life and it is a normal thing. If I recall correctly,  hearing is one of the last senses to go.  Sort of an incredible phenomena to be in two worlds at the same time and hear what people are saying to you. 
     The fight is not over, but there comes a time where being in God’s presence is a far better way to live than suffer in your temporal shell.
     Amidst all of this emotional exhaustion,  the Whittier Daily News contacted us to do a piece for the upcoming fundraiser.  Sergio gave it his all and then slept all day! Then ABC news contacted us because they had seen the article and thought it would be great story to expand.  Never even went through my mind. God is creative!
     Although I struggle to understand how and why we have been chosen to be covered for every single detail of our needs,  God is meeting and covering every single detail and cost.  Maybe He knows how large the hole will be that will never be filled.  

Mina's note: Please leave a comment for the Perez family after reading.
 

 2nd MRI and Update

Posted 02/15/2017 by Taline Perez

The second MRI was not successful today. He lasted about 30 minutes with movement. We'll see where things go from here. Our Valentine's was very sweet and emotional. We normally read everything we write to each other aloud to the person. It was very sweetbitter. Yes, I reversed the order because it is first very sweet. It's sweet because it's normal for us to say loving words out loud to each other and so we are not doing anything out of the ordinary. But bitter because this could very well be the last Valentine's and we are all against that. There's a split second thought to not do it, to sidetrack it as if it will not cause other things from happening, but I know it's better to go through life than around it. Adriné is noticing changes as well, and it creates a sadness around her that can not be avoided. It's very hard to watch your strong, social, loving, physical, affectionate dad turning into someone who is so different on the outside. Inside he has not yet lost his sense of humor or ability to discipline when someone is out of line.

Refreshment break at the school father/daughter dance.
Read about that main event in the blog called Great Men. See the right side of this page and click on it. 

Nairi is a doll! As we all cried, and cried, and cried and cried, I could hear her telling the caregiver that we were crying because we were so happy! Happy that we are all together for Valentine's and Sergio is alive. I'm not sure what her grieving will look like. But later at bed time she cried and cried because she had never met my mom who died before I got married and had never met her aunt, Sergio's sister, who Adriné adored and talks about. I feel very protective of my family right now. There is no time or energy for non sense from outside intruders. This is sacred time to us and it will remain sacred. Again, thank you for all your support in all ways. It is astounding! There are so many people helping us in what ever way they can. Things like this only enrich your definition of the word"family" and all it's connotations.

"Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always hopes, always perseveres. Love never fails. " I Corinthians 13:4-8

 Mina's note: Once again I ask you to leave a message for Taline & Sergio's spirit bolstering.  :)

MRI Update

Posted 02/11/2017 by Taline Perez

February 17 will be 6 months since we first rushed to the emergency room the day after school started. We had an MRI scheduled as follow up for the radiation and chemo for 7 weeks. Sergio was not able to do it. He couldn't stay still and tried to pull everything off. He is still actually quite strong on his left side and got out of the strap as well, used to keep him from falling off the table. We are rescheduled for this coming Tuesday with a sedative, Atavan. We all sort of missed that this was his first outpatient scan without any sedatives. Pray that it be successful. Although I'm not sure how much he or I need the MRI to know what is happening. He told me two weeks ago, " I have to go. I have to go. I have to go." through tears but comforting me, hugging me and pulling my head close to his chest. Not that any of us know when, but he probably feels his body changing. He told Adriné the same thing last week after she told him, "I love you Baba. I don't want you to die Baba. " which she says daily and nothing new in their daily routine except for the added sentence, " I don't want you to die." as she cries uncontrollably once the words are said. This week he has said several times, "Let go." to me. He has been very sad because he does not want to die. He can't say those words. The conversation is more of me making statements and him saying "yes" or "no". It takes about 15-30 minutes usually. Here's a shorter version. "Are you angry?" " No." " Are you sad? " "Yes." " About family?" "No." " Work?" "No." " Not being able to talk?" "No." "Having cancer?" "Yes." " Lapena alta ba laka laka atabamaka ahhha aamanadatalkaka." "Are you saying you want to die?" " NO!!" "You don't want to die." "YES!" I just spent a few short minutes looking through 11 1/2 years of pictures on my phone before writing, the amount of time we've been married. All it took was a few minutes. It's been too short. So so sweet and way too short. We use to talk about who would die first, and how maybe we would be lucky enough to die together like in the movies. Yes, Sergio literally talked about everything. Then, how whoever died first would be the lucky one because the other one would be left behind miserable. At least I can say I have experienced love like that.

Mina's note: Please leave a comment so Taline and Sergio can share in your thoughts.

My Dad

Posted 02/07/2017 by Taline Perez

February 6, 2017 One of my favorite shows is “The King of Queens.” . It’s a comedy sitcom about a couple and her father who lives in their basement. The father on the show is a lot like my dad, except Armenian and Middle Eastern. In real life, a character like that is a little hard to swallow daily unless you're his eldest daughter who doesn’t get bothered by who he is. But on the show, he’s portrayed the way I see my dad. A little ridiculous at times, way too direct but honest, rough around the edges but a softy who will cry because of a memory, loud but silent when he’s lost or hurt, overly confident and stuck in his ways but loyal and predictable, smart, and unable to express his emotions well. The most important thing to him is respect. 

My favorite three things about my dad are his common sense, generosity, and transparency. He is who he is. He doesn’t hide it, try to change it, or apologize for it. He is not manipulative. He is by no means flawless, and around the time my mother died 13 years ago, he apologized to me for some of the things he had done “wrong”. But I had decided years ago that God doesn’t make mistakes. He was meant to be my father for good reasons because God is good and he is very capable of turning and using anything for good. He would be the person who would shape who I become, and God would use everything he did right and wrong to do that.

  Last Friday night he went to a new primary doctor, I’ve lost count because he changes them so much which I hear is more common than you'd think, and he was told to go to emergency because he didn’t look good. By 1:00 am, we found out that he has a mass in his left lung. My sister heard “hope” and I heard , “ A mass the size of a man’s hand that doesn’t look good and is probably cancer because it is not smooth, sort of ugly, with lots of fingers coming out.” Maybe because of where I am with Sergio I am able to hear things as they are. It is a necessity and a skill you have to develop quickly when there’s no one else there with you in the rooms and you have to be the one to be strong so you can support your husband. Although once again, God brought people around us who today go to every appointment with us and me. And these aren’t just ears, these are people who make you feel grateful for the wait of their arrival, an overflowing of support and care from people who have been chosen and placed by the hand of God. He doesn’t miss a thing.

We don’t know the stage yet, but I think it will be advanced. My father started smoking late in his life, in his early 30’s when he went to Argentina by ship. He lived there for six months and then returned home. Besides picking up Spanish, he picked up smoking. He has the “smoking” cancer.

My dad has had a hard life growing up in poverty and hunger during much of his early life. His parents escaped the Armenian Genocide and fled to Lebanon. There are reasons for the dots on the map of his life where he stopped, got lost, or recovered. Unfortunately he has experienced a lot of immaturity (unlike us) from believers and makes the easy mistake of confusing people with who God is. A little like Huckleberry Finn when he decides he'd rather go to hell rather than accept the beliefs about blacks at the time. That's not the only choice available but that's what he chooses. That option also excludes any room for people to grow, and hopefully we will all grow and change for the better. But ultimately he has a very hard time trusting God to do what is best for him. He trusts himself more. Maybe this is because of what he’s been through. It’s difficult to say. Just like the intricate contradictions in who he is, his relationship with his God is the same way. The same God who he introduced us to, the same God he wanted us to love so he drove us to Sunday school but didn’t attend church, the same God he says knows him, yet he struggles to know.

I love my dad just like the little girls at the dance. He means the world to me, just like Sergio means the world to me. He blessed my marriage with Sergio because as he put it, “ This is good. You two think just alike and you’re the same in your religion, the same type, the same thinking, the same beliefs about Jesus. It’s good.”

What is on my mind? What else can you take away from me God?

Great Men

Posted 02/06/2017 by Taline Perez
January 3, 2017

     There is a beautiful phenomenon you observe when you work with children.  Children love their parents no matter what. 

 Sergio use to often tell us about students he adored or felt a close connection to. There were many. We have prayed for many kids and their families and at least twice yearly discussed the one or two kids he wished he could adopt.  He’d said it so often that Adriné and Nairi had actually started encouraging him to think about adopting seriously. " I think we're going to have to adopt Baba.  You always talk about it. Let's just do it!" 
      He would tell us how kids would describe their fathers to him,  almost as grand as a hero in an epic. A little later into the conversation he’d come to find that the father was in jail,  or only saw the child once or twice a year,  or had returned the child to the mother, or cared for the child but treated the mother badly, or a variety of events.  But still to that child, his or her father was huge and grand and they were connected to them by a power beyond their control.  It is built in. 

We need our fathers.  We love our fathers. It is irrelevant how great or how poorly they raised us.  I would like to think many of us have had great fathers but am also aware that there are fathers who haven’t figured it out yet, and even fathers who are not worthy of their children.
     Sergio is a great father.  I have felt blessed and happily surprised that I chose so well.  I’m not quite sure how I did that,  except that God closed every door that was not the best for me.  Nairi has been waiting for years,  her “whole life” as she puts it,  to go to the Father Daughter dance at school with Sergio.  She got her dress in the summer and even though she loves to wear dresses, she refused to wear that one dress because it was special and she was saving it for the dance.   Adriné is my tennis shoes and dress girl who loves alone time with her daddy, which is why she’ll go to the dance. She likes it more than she’ll admit, but that will come with time.
     Sergio made it to the dance!!!!! He lasted about an hour which equals a lifetime for Adriné and Nairi.  After much convincing, begging by the girls,  crying all around, a call to his buddy Ivan for back up,  and some strong words from me that this could be the last opportunity he gets to take them to this dance,  he put aside his feelings about how he feels right now and went to the dance.  He was concerned about what he would and wouldn’t be able to do there, how people would react to how he’s changed, what people would think of him as he struggles to eat like before (he didn’t eat by the way),  and maybe even feel different and left out if he’s the only person there in a wheelchair. 
     Although I have a special education credential,  I have a new perspective of what handicap people face daily.  Nothing intentional,  directly mean,  or against you,  but most of the world is not set up to include handicap people at the same level as everyone else and people just don’t think about it or teach their children intentionally how to treat and deal with people with special needs.These are things that would be obvious to a handicap person if he was designing it. There’s a sense of “that should be good enough”,  and it really shouldn’t be that way. Doors that don’t stay open or too heavy to open,  seating that sets you apart from everyone else, parking spots with no room to get in or out of a wheelchair (even handicap parking),  steps, steps and more steps that make a two minute activity into a 20 minute adventure. But,  it is a minority group so it’s not a topic the masses think about or want to spend their time or money dealing with. But when it’s your husband,  the person you hold near and dear to your heart, it matters. 
     We all had a great time.  It was well worth everything. The image that has imprinted itself in my memory is looking out over the entire panoramic view of the cafeteria that was magically transformed into a tropical “Hawaiian” scene,  seeing almost all the fathers dancing with daughters whether they could dance or not to loud pumping music, including others’ daughters in their groups,  and seeing Sergio dancing in his wheelchair with Nairi and Adriné and his buddy next to him and with the girls.  It was such a powerful image for me. I felt like God was saying to me, “ I will provide.  I have created man.  I have created great men and I will provide what they need. Don’t worry.”
     Fathers mean the world to us.  The great ones,  the mediocre ones, and even the bad ones.  The adopted ones,  the friend ones,  the mentor ones, the ones who step in as needed. Grandparents, uncles, brothers, teachers, friends, neighbors, can all be men who have a heart to give up their evening to fill up little girls’ hearts. An hour event like that one holds so much permanence, I think most people miss the value of it.  Where should I start?  Having your dad be proud of you,  spend time with you, dress up for you,  dance with you,  demonstrate how you should be treated, show you how to be yourself, show you how to have fun, teach you how to dance, smile at you, enjoy your presence, and put aside whatever hang ups they have for YOU.  Ultimately, whether they know it or not,  men have been given the great privilege of communicating who God is to their children simply by loving them by being a father. This is what great men do.  This is what any man can do as a father, regardless if he is the biological father or not.
     I am so very grateful for all our friends and community who have continually stepped up to meet our needs for Sergio, me and the girls.  You have covered everything from the small and practical to the large and complex. Like Ivan changing his plans to be there for his friend’s daughters,  we have been blessed to be experiencing many of you pouring into us. An hour drive to take the girls to the park,  commitments to supervise so they can ride their bikes,  thinking of the girls when a new movie comes out,  talking to Sergio on the phone, making a Tylenol run to Target,  love notes (which are all hanging up in the girls’ room and Sergio’s box which he looks through regularly,  play dates, thoughtful gifts of activities to do at home since we are mostly homebound now, faxing, filling out forms, supermarket runs, donations, clothes, service, and love for their Baba. And I am certain I am missing a few. Maybe what Sergio told us over and over is true? Maybe we will be fine no matter what happens? Maybe. What ever happens,  my children are seeing the face of God and they will be alright.

“ For God created man in His own image. In the image of God he created him; male and female He created them.”    
Genesis 1:27 

“ A father of the fatherless, and a judge of the widows, Is God in his holy habitation.”
Psalm 68:5

“ A friend loves at all times...”
Proverbs 17:17