Sickness and Meat

Posted 01/24/2017 by Taline Perez

Sergio is sick with a fever that I've been dreading would come on. The girls' were on their second round of being sick, I think from emotional and mental exhaustion. They sleep on time and still are unable to wake up in the morning like they use to. Somehow an unspoken rule has come about in our house, " You don't wake up someone who is sleeping." Maybe because we all know the exhaustion we feel and realize the other person is probably feeling the same way. So, my kids don't wake me up in the mornings either when I sleep right through the alarm. We are on a completely different time clock that is governed by emotional needs and physical necessity. So, even this business of being sick is a complicated matter because in the end, the heart governs most of our decisions. How is Sergio suppose to not let Nairi hug him, kiss him,

go up close to his face as she holds his cheeks in her little hands? He hasn't been able to do it. Or Adriné who misses so badly how she would snuggle with him every night as he read something to her or discussed some important question of the day about relationships, friendships, or another story Sergio had for them. She can't do it. Or parents visiting who are sick but want to get time with their child who they may not have much time left with? I can not hold it against him or them, and don't even know what I would do. It's just tiring to be the "police" all the time and the caregiver. And yet I do it gladly, a little like parenting. I've been thinking about how to best describe the ongoing pain and tiredness (on all levels). This is what I came up with. I hate tearing meat apart. I'm not sure why because there are plenty of others things that don't bother me at all. But have you ever tried to rip a piece of beef apart with your hands? This is like that. You pull, yank, put all your strength into it and it never works. You will never be able to rip it apart. You may even try to dig into it in an effort to catch a weak spot you can tear. It's not meant to be ripped apart. This cancer is like that motion of being pulled apart individually and from Sergio. It just never stops, so you finally give in to the fact that this is just how it is going to feel until a sudden heavy cut does sever you apart. I don't know which is better (and I am extremely relieved I am not in charge of that decision). The constant gnawing or a clean cut. But there is a reason for everything. Reasons that go far beyond my own pain and knowledge. Perhaps for my kids, for someone else I am not even aware of, or even for me for a reason I may realize later since I stand frazzled and "dear" like in the lights of an oncoming car right now, for whatever reason I need to be going through this and whatever God is revealing of himself to Sergio it is all God's timing. Thank God. I thank God for the pain I feel because it comes from a good place. It comes from and because of the love I have experienced and experience with Sergio. I thank God because He is Living and real and answers my prayers from the smallest details to the biggest challenges we have, and not from where you think it would come.I can not make any sense of it. I thank God that He is a provider, a loving Father, and has us in His hands. God is nothing like most of us and yet he can use all of us for good. My God will never leave me or forsake me. "Wherefore we faint not; but though our outward man is decaying, yet our inward man is renewed day by day. For our light affliction, which is for the moment, worketh for us more and more exceedingly an eternal weight of glory; while we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal." 2nd Corinthians 4:16-18 Taline Perez

Mina's note: Please Leave Taline and Sergio a comment below

Moving Along

Posted 01/13/2017 by Taline Perez

Sergio has been crying a lot this past week. He hasn't been feeling well, fighting a bug I think. And his frustration level is way high. I think he also needs to socialize so we have to figure that out. If you would like to visit for about 30 minutes and are not sick, please call and come by. He also wanted to walk on Sunday from the sofa to his bed and with a GATE belt, walker, and some help positioning his leg, and he did. He also practiced with PT on Tuesday. Such a confusing moment for me. Happy that he is progressing from the stroke and yet this cancer that lingers over everything. The girls are doing well in school which is amazing to me, but I will accredit that to Sergio. So many things can cause kids to not do well in school. I know in high school (because I use to teach high school) it's usually a pretty large or complex problem with no easy solutions. He is the elementary teacher who still knows all the names of all his students in his first class he taught 27 years ago. He had several talks with the girls prior to surgery instructing, challenging and encouraging them to do well in school prior to his surgery, no matter what. And not a serious sit down talk.They were hugging, watching TV casual talks as if it was part of everyday normal life, which he has always done so well. Nairi won first place in art for Reflections and Adriné first place for literature (writing) recently. Nairi is also reading now (again because of Sergio who has read to her almost daily since she was about 6 months old as he did for Adriné) in the big cushy chair in their room on his lap (often forcing me to end the 30-60 minute long "reading" but really talking time) and started teaching her all the rules last year. She has become his little speech therapist and he is actually slowly increasing his vocabulary. He wanted to sleep in his own bed Monday, without rails. He did, but out came the TV monitor, moving of furniture and that feeling I use to have when the girls started walking as toddlers. On alert all the time with no down time for your brain. Well, off to do more paperwork to get assistance for the $4300.00 chemo pills that he can't take and I can't return because he can't swallow them whole. He chews the pills. I still love him as I always have and like him even more than the first time I saw him waving enthusiastically at me while he was waiting to meet me for the first time in front of the Cheesecake factory in Pasadena as I drove by to park. Taline Perez

Mina's note: Please leave a comment, as Segio and Taline read these together for encouragement.

Midnight Prayer

Posted 01/10/2017 by Taline Perez

If you are up like we are, please pray for Sergio. Today was his last day of radiation, first day of school for the girls and he is restless and sleepless. He says, via deduction through questions, he has a lot on his mind and is a "little" worried, Sergio style. I'm guessing he is grieving the loss of things like we are. Lately, it's mostly things that use to be. I can't imagine everything going through his mind that he can talk to no one about, except God. It would be great to talk to a counselor, his friends, anyone. It breaks my heart and has been about the only thing that causes an anger to stir up in me. It's odd considering how many other serious and life threatening things are going on, but it angers me, for him, that someone like him who is so social, loves to talk, and never runs out of words, can not talk. It's a complicated process to digest everything that's gone on , has changed, and will never be the same. And it feels like you are always a few steps behind what is actually happening because the intensity of it is so strong and moving so fast and changing daily. I have no idea what people mean when they say, " Enjoy the moments. Enjoy your time. Enjoy the days..." What does that mean? Maybe they mean, "Breath once in a while." or they don't know what they are saying, because it is nothing like that. It's like being in one of Dali's surreal paintings. Everything's off, resembling life just slightly enough to make sure you feel and know it's real, but not the real that brought you comfort before. This is just a constant ache and unrest and it is not going to go away. We are not in "enjoying mode" nor can anyone "make" us cry by saying the wrong thing as so many people have apologized for doing. That assumes that crying is bad, and it is not. That feeling pain is bad, and it is not. That being hurt is bad, and it is not. We are in pain, grieving, feeling loss, and making the best of it, not for ourselves, but for each other in an attempt to distract the other person from their pain for a little bit and help each other keep perspective that "This too shall pass." And that is all okay. Munch's painting, "The Scream" might be pretty close to saying without words the feelings going on right now. We love you and are so thankful that we are in community with you going through life. Don't let the tears deter your affection or mislead you to think that something is wrong, nothing is right already.

Precious Words  Posted 01/07/2017 by Taline

Feeling crummy, overwhelmed with finding the right mix of helpers in the home. And I finally got sick. Running a low grade fever. It's been a blessing I haven't gotten sick in the last five crazy months as of January 17. Hopefully it doesn't get worse. But last night, before dinner, Sergio was praying as he often does. We can't understand him, but in the middle of it, he paused, took a deep breath, and slowly said, " Put ........ your.....helpin..........hand......on........us." The girls started giggling out of joy and my eyes filled up with tears. In my bucket of words I've been collecting where I have to dump some out, shelve others to draw on later, and pour the rest on my head so it can cover me in it's light, Sergio's words are precious. Taline

Home Sweet Home

Posted 01/05/2017 by Taline Perez

Well, like most things in life, you gain something and give up something else at the same time. Sergio is home!!!! We are thrilled. The girls are so happy and enjoying every moment of it. Sergio still parents, says “no” loudly when they don’t obey, prays, plays games as best he can, and sits watching TV holding his girls tight. We’ve actually had to come up with a schedule so we can all get Sergio time. Like always, even in this condition he remains a loving father and husband. We laugh a lot and he has not lost his sense of humor at all. He has a few sessions of radiation left and then we will see what the MRI shows a few weeks later. He’s been wanting to go to church and he did this past Sunday.

 

  I didn’t hear a word of anything. I just watched him and let the memory soak into my soul, listening to every word he sang and noting every blink of his eyes, every movement of his mouth, and every twitch of his face and just enjoyed looking at my love.

  

   So, when he came home he was exhausted and napped for hours. But I know it was worth it to him, to be loved by people he hasn’t seen in a while, not by choice. TCU was great for him to gain his strength back and recover from the strokes. But it also hid the constant care he needs now that he is home. In addition, he does not want me to do anything for him I didn’t do before his surgery. This creates a problem when I need to give him a shot, or medication, or help him physically in any way, or direct his exercises etc. I think it is his way of taking care of me and preserving our roles, not letting it turn into a care taker role. I didn’t understand what the hospital and others were saying to me when they kept saying, “He’ll need 24 hour care.” I had no clue. The continence and impulsivity requires night time assistance as well. The help has been necessary and exhausting at the same time. Different people in your house, different personalities, different routines, no privacy, no freedom of speech, no of a lot of things. Mind you that is on top of the wrong form of chemo pills to deal with, three hours a day allotted to radiation from transport there and back, giving shots (there’s a reason I did not become a nurse and he can feel it), my kids feeling like all my energy and attention goes only to him, non stop phone calls I need to make, beginning of bed sores, dealing with equipment, PT, OT, speech (which he absolutely loves, no surprise there) and my all time favorite showering without injury. At this point if we can keep it to an hour, we are doing well. 

    But even in that it is a blessing. It’s a blessing I am at home and can spend time with him. It’s a blessing I am available for my children as so many things in their lives are changing. It’s a blessing that I get to care for the one person who has come the closest to loving me like God does, unconditionally:) He is a blessing in our lives AND IT IS ALL WORTH IT. Sergio slept every night next to my bed in an uncomfortable pull out chair for weeks in the hospital when I had Adriné prematurely at 30 weeks. He hung out with me almost all the time, fed me while I was flat on my back instructed not to move at all, bathe me and kept me company. Several of the nurses told me that they had never seen a man sleep over beyond the first night in that unit. “You have a great guy.” they said as I smiled thinking, “I got a way better deal than I thought I was getting!” He spent 5-8 hours a day holding Adriné shirtless for cuddle care in his chest, as men give out heat so they can actually hold prematures babies and still retain their body temperature where women can’t because they absorb heat. And yes, he was the only male in the ICU who did that and did that for hours, more than some of the women. This is the guy I have been fortunate enough to be married to. 

   Sergio being home has prompted lots of serious conversations. Nairi has almost worked through her confusion about why Baba is home when “The hospital didn’t fix him!” I have been bursting one bubble after another this past month, gently correcting prayer praises that he’s home because he is healed and so on and so forth. I hate this part of being a parent. But what do I do? Let my child think the cancer is gone? And maybe loose her trust later. Her prayers since she’s beginning to get this bad news has been something like this.” Lord, thank you for today and for Baba being home with us so we can be together. And God, help him get better, and keep making him better, and put that little Satan who is as little as my pinky in the trash can where he belongs! Because he is little and you are big. You can lift Target with your little pinky. And take out all the bad thoughts in my head and put those in the trash can too. Thank you for my family and Baba and all the people who love us and are helping us. Amen.” 

   Adriné has progressed into “What if? “ questions. She starts with, “I’m not saying Baba is going to die and I don’t want him to, but what if...? “ She asks really good questions and Nairi is nearby listening usually and happily adds some hope into the reality mix. 

  Just to give you an idea, our topics include: If Baba dies do we want to see it happen? Do we want him at home? is he going to suffer? Is he suffering now? Can you see the spirit leave the body? Is it scary? How we don’t want him to be alone. Would I have married Sergio if I knew he would get sick? YES, I can’t believe I’m having these discussions with my kids, but here we are. I think the holy spirit brings up what needs to be brought up when it needs to be. Fortunately my kids are talkers and they just about tell everyone every where we go that their dad has brain cancer and had strokes but now he’s home. Well, that is a recipe for some of the warmest conversations you can have with strangers.

Many people have been sharing their lives with my kids, their losses of a parent as a child, and that they are okay years later. Inquisitively, my kids ask what they do for a living, if they went to college, if they were able to live in the same house, etc. There is something healing about talking and finding out that you are not alone. 

   I don't want to miss out on life’s blessings and treasures out of fear. They might be limited in time. I’m referring to people, not material things. God is not a God of fear, but love. And as corny as it sounds, love does cover everything and can change everything. 

   So, I’m getting the hang of this I think. Not worrying and letting God do His thing. I can’t do much any way. No fear. I am amazed where the help comes from and the money. So many of you have reached out to us because you have gone through a similar tragedy and you know exactly what I’m talking about. I was telling someone recently how this is transforming me and changing me to see things I never noticed before which means I have a new responsibility on my plate, a good responsibility. Sergio has always been a very generous person, at times to an extreme, and has been since the day I met him, but feeling where I am now, being on the other end of needing help and receiving it by people who knew him five, ten, even 20 years ago and even people who don’t know us, I can honestly say he was right. I can’t remember the trivial dollar amounts I had lots of conversations about at the beginning of our marriage, but I do remember who touched his heart, what their stories were and the effect it had on them, Sergio and their relationship. It does make a difference, a bigger difference than I had accredited to it. Again, thank you for your generosity with your time, service, words, and finances. 

 “There is no fear in love: but perfect love casts out fear, because fear has torment; and he that fears is not made perfect in love. “ I John 4:18 

 “God is always ready to help.” Psalm 46:1 

 Taline Perez

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