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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