Embrace Life, Brace for Death

I want to showcase my amazing daughters.  Both Lucia and Adelina had a writing assignment this past week.  And, I was thoroughly impressed with the depth of their writings. 

This past week, Lucia’s school celebrated Catholic School’s Week.   One of their school assignments was to write a letter to their parents.  The parents were invited to have lunch with their student, and they were presented with the letter from their child.  As I stood in the school reading Lucia’s letter tears ran down my face.  Of course I was humbled at Lucia’s expression that we have to do without because of our choice to send her to a private school.  And yes, this is awkward for me to present to the world.  However, what Lucia was expressing that she understood was of much greater importance to me.  An 11 year old child understands and appreciates the sacrifices that are made due to her brother’s health.  She realizes that the education she is receiving is of great value and comes at a high price.  We are truly blessed to have our daughter receive this education, and furthermore Cesar and I are blessed to have a child that recognizes and appreciates this at such a young age. 

 

In addition, this past week Adelina completed an assignment for her Literature class.  The topic was on the writings of Emily Dickenson, specifically on the topic of death.  Her teacher challenged the students to explore and analyze Emily’s perspective on death.  Below is the paper that Adelina wrote as a sophomore at Bishop Kelley High School.  The depth that Adelina portrays in her paper is quite impressive.  It is my opinion that our personal life has forced our children to see life as a true gift from God.  Every aspect of your life should be absorbed.  And, when this life passes, you will be prepared for death and the amazing gift of eternal life.  

The following was written by Adelina Segovia, submitted on her 16^th birthday, January 27, 2014. 

          One of the most common themes in Emily Dickson’s poems is death. Readers assume that because she writes of it so often she must be obsessed with it or maybe even scared of it, like most people are.  Emily’s view on death is in fact extremely different than many others, solely because she is not frightened by it. She is not frightened by it because she is familiar with it, she has already cut loose of all her attachments, and she believes strongly in her religion.

Emily is not frightened by death because she is familiar with it and the reasoning for that is she has already experienced the way dying feels, she knows the characteristics of it, and she has been to heaven. To begin, Emily has no fright of death because her “life closed twice before its close” (My Life Closed Twice Before its close). Through her poem she tells readers that two tragedies in her life have already occurred that allowed her to experience death. Often times the more people experience situations the more comfortable they become with them. Therefore, because Emily feels as if she has already experienced death she is no longer afraid. Secondly, in Emily’s poem Because I could not stop for death, she personifies death as a gentleman. A gentleman is polite and kind and therefore readers can see she thinks highly and is unafraid of the end of her life. Usually death is viewed as unavoidable, but Emily feels as if “He kindly stopped for [her].” This implies that death was coming to meet Emily on her own terms, like a gentleman would. Above all, Emily is familiar with death because she “went to heaven” (I Went to heaven). Maybe Emily did not actually go to heaven, but she thinks she did. She is now familiar with God’s perfect kingdom, which would make her in fact in a hurry to die already so she could be with Him. Because Emily has already had the experience of dying, knows deaths characteristics, and has been to heaven she is completely familiar with death in every way which withdraws her from any fright of death.

Humans are often scared of death because they feel as if they are not ready. The people on their death bed are not ready to leave their loved ones behind, they are not ready to give up their worldly possessions, and they are definitely not ready because they have more to accomplish. In the first place, people are not ready to leave because they know that their loved ones will be upset to see them go. When people love someone they never want to see them upset; therefore, they wish they could stay with them forever. When Emily is on her death bed “the eyes beside had wrung them dry” (I Heard a Fly Buzz When I Died). This implies that the people who love her are no longer upset anymore. They are ready for her to go; furthermore, she is ready to leave. In addition, people are never ready to leave behind all their worldly possessions that they have worked so hard for. Once Emily knew that death was approaching her, she “willed away [her] keepsakes signed away what portion of [her she] could make assignable” (Heard a Fly Buzz When I Died).  By writing this she has made it obvious to readers that she is ready to leave this world and she is showing this by proving that there is nothing left in this world for her.  Ultimately, humans aren’t ready because they feel as if they have more to accomplish in life in order to achieve success. Emily, a very intelligent woman, figured out that “success is counted sweetest by those who ne’er succeed” (Success is Counted Sweetest). She is not worried about accomplishing more, because she already knows that those who are considered successful will never be satisfied with themselves. These people will never be satisfied with themselves because they will never appreciate their success as much as those who lack it. As readers can see, Emily is not frightened of death because her loved ones are okay, she has no possessions left, and she has figured out that not having increases her appreciation for whatever she lacks. Emily is ready for death.

It is man’s nature to fight until the end, because no matter how religious people are when death approaches, they will fight due to human’s doubt and uncertainty. Not Emily Dickson though, she is a strong Calvinist who is confident in her religion, which then allows her not to be frightened of death. Emily believes in God’s ultimate plan and death being an extension of life. First, Calvinist believes that Christ saves people through his grace and not by their effort. Emily was so strong in her faith that she knew that her fate was already sealled by God and “retreat was out of hope, behind, a sealed route” (The Journey). Therefore, there was no point in her worrying about death, because God already had a plan for her and there was nothing she could do to change that. Secondly, Emily is waiting for “that last onset” (I Heard a Fly Buzz When I Died). In Emily’s poem she uses the oxymoron “last onset” where “last” refers to the end and “onset” referring to the beginning. This oxymoron is proof in her believing that death is the beginning of eternal life. Therefore, readers can see that Emily is unique because she is so strong in her religion and truly believes in God’s ultimate plan and death being an extension of life.

In conclusion, Emily Dickinson is often misunderstood because she writes of death so frequently. Emily lived her life in seclusion not because she was depressed, but only because she is familiar with death, ready to leave this world, and is utterly religious which is unlike anyone else. What readers should realize is that Emily is showing the world that she is unique, different, and one of a kind which leads her to not be frightened by death.

Luci & Addi, we love you and applaud your depth and gratitude at such a young age.  You will make a difference in this world!

 

 

 

 

 

Good Job!

I walked into the bathroom this morning while Diego was taking a shower.  He asked, “Mom, would I be dead today if I didn’t have my heart surgeries?”  My reply, “No, Diego you would not be dead today without your surgeries.”  He followed that with, “Would I be able to play soccer?”  “Diego, we don’t know for sure what would have happened, but eventually you would have been very limited in your ability to play soccer.”  Diego replied, “Good job, Mom.  Thank you”. 

I was immediately reminded of the night, pre-double switch that Diego was on an emotional rollercoaster ride of negative and horrible emotions full of anger, fear and anxiety.  In that moment, I was not convinced that I was making the right decision for my son.  There were so many factors that helped me get through that fear.  The most important were my family, friends and God.   I had no way of knowing what the outcome would be.  

Diego gave thanks to me, but I have to give the gratitude first and foremost to God.  Followed by, Dr. Paul Gehring.  One day, I’ll be ready to tell the full story, but for now…Dr. Gehring, I tip my hat to you.  God Bless, thank you and good job!

  

The Bionic Kid

Diego has been waiting 3 long months to learn if he can participate with his soccer team again.  He returned to Boston for a stress test.

 

Dr. Marx said everything looks great.  He was very pleased.  He can hear the murmur that is due to the leakage in the aorta and pulmonary stenosis.  These are the two conditions measured by the MRI post surgery.  Basically, there are no changes.  There isn’t any leakage in the tricuspid valve.  This is the valve that had severe regurgitation pre-double switch and was repaired during surgery.  Diego will need to continue on his medications and need to be placed on a holter monitor to get a better picture of potential heart block.  Based on the stress test, he gave approval for Diego to participate in soccer.  The only limitation is to rest if feeling or appears to be overexerted.   

Go Diego Go!

Make A Wish & The TU Soccer Team

All thanks given to our wonderful local cardiologist, Dr. Kimberling, Diego will be receiving a wish from the Oklahoma Make A Wish Foundation.  The coordinator of Make A Wish called with a special treat.  The TU Soccer Team is a Make A Wish Ambassador.  Sunday November 3^rd will be their last home game, which means it is Senior Game Day.  The seniors wanted to do something special for their last game so they contacted Make A Wish to ask if they had a child that loves soccer.  They immediately thought of Diego.  Diego will be introduced as their Honorary Team Captain, along with a few other surprises. 

 

Much to our amazement, the few other surprises turned out to be earth shattering for our soccer fanatic.  It started with the TU Soccer Coach and team introducing themselves to Diego then asked that he join them in their locker room before the game began. 

 

It was an exciting moment as Diego ran onto the field with them team sporting his new TU Soccer Jersey.  What a wonderful addition to Diego’s soccer jersey collection.  This particular jersey will always hold a special story in Diego’s life.

 

 

During halftime, Diego was called onto the field and introduced as the TU Honorary Team Captain…Oh what a privilege! 

Then, something beyond his wildest dreams happened.  Notice the rolls of paper being held by the TU participants standing behind Diego.  They each unrolled their sign to reveal the following earth shattering announcement…

Your wish will come true with your whole family too!  World Cup bound June 2014

 

I think the Fox23 video below shows exactly how we were feeling in that moment. 

http://www.fox23.com/news/local/story/Make-a-Wish-Foundation-comes-to-Tulsa/8jokVdy2GkyPM4ZD1qSArg.cspx

 

 

http://www.tulsaworld.com/news/wish-for-world-cup-trip-granted/article_f2209f91-d9ac-5110-962b-87ef020323aa.html?mode=story

 

MICHAEL WYKE/ Tulsa World

Diego Segovia (center), 10, surrounded by family, reacts as he reads signs held by TU cheerleaders saying he and his family will attend part of soccer's 2014 World Cup in Brazil sponsored by the Make-A- Wish Foundation, during a surprise announcement at halftime of the men's soccer game at the University of Tulsa on Sunday.

 

Thank you TU Soccer Team and The Oklahoma Make A Wish Foundation for making Diego’s dream come true!

 

 

 

 

 

A Grand Homecoming!

Cesar, Diego and I flew home late Sunday evening.  Diego is definitely ready more than anyone to be home, but everyone falls in close behind him. 

We didn’t make it home until 11:00pm, but what an amazing welcome we received!  I had asked that no one come to the airport because we were arriving late at night.   So, the huge warm welcome we received was unbelievable.  The airport arrival was more than enough to celebrate this huge heart success, but there was so much more; the camera man (did that really happen), the house decorated, a basket full of heart shaped rocks(found by friends on a nature walk), and even food & beverages in the fridge.  It is surreal and uplifting to be surrounded by so many wonderful friends full of love, kindness and warmth. 

 

 http://www.newson6.com/story/23116066/tulsa-boy-receives-warm-welcome-after-surgery-in-boston?autoStart=true&topVideoCatNo=default&clipId=9191093
 

 

 

 

 

MRI

We arrived at the hospital early in the morning for Diego’s MRI.  It has been a wild few nights leading up to this appointment as Diego’s anxiety was definitely high.  He hasn’t slept well and yells throughout the night.  In his sleep, he fights the nurses yelling; “leave me alone”, “you are hurting me” and “get away from me!”  I can only imagine how grateful he must feel to be finished with this appointment.

As it turned out, Diego decided the MRI was pretty cool!  He loved the idea that he was able to watch a movie through special glasses.  He also liked the button and earphones that he used to communicate with the technician.  He had no problems remaining still for the MRI.  The only thing that is able to place Diego in a trance is watching a movie.  The world could be crumbling around him, but as long as a movie is playing, he doesn’t move. 

After the MRI, X-ray and EKG were complete; we met with Dr. Marx.  The MRI showed that Diego had mild pulmonary obstruction and trivial (9%) aorta leakage.  The things to look for are heart block and LV failure, but both are unlikely given Diego’s current state.  He even had his stitches removed from the chest tube incision. 

 

 
 
 
And, Dr. Marx was thrilled to receive a Heart Warrior T-shirt from Diego.    

Post Op 8 East ~ The Floor ~ Day 6

The echo showed leakage in Diego's aorta artery.  Pre double switch, the aorta was pumping blood only to the lungs (low pressure system) now it is pumping blood to the entire body.  This is what the aorta is designed to do, but in Diego’s heart for the past 10 years it has not had to maintain the higher pressure system.  Del Nido does not want Diego leaving Boston until he looks further into it.  Del Nido was in surgery this morning, but said Diego can be discharged today.  He has requested an MRI during Diego’s follow up appointment which is scheduled for 7:00am Friday, August 9, 2013.  First he will have the MRI followed by EKG, chest X-ray and appt with Dr. Marx.  We don't have any more details on the leakage at this point.  The MRI will hopefully provide more insight later in the week. 

Diego has asked many questions about the MRI. He is definitely disappointed to learn there is yet another step so quickly after discharge.  I took this opportunity to explain to Diego my recent realization.  I thought if I shared my insight it might help him to also see things a little differently.  When we made the final decision to move forward with the Double Switch operation we had to accept that our goal wasn't to cure Diego's heart defect.  Our goal was to improve his heart in hopes that he would be able to hold onto every part of his heart for as long as possible. There will always be another step in the process and another obstacle to overcome. We traded one set of problems for a different set of problems. However, the advantage is the new set of problems hopefully won't require a heart transplant or valve replacement anywhere in Diego's near future.  It has taken me many mental battles to come to terms with this and I certainly don't expect Diego to accept this fact after one conversation.  However, I do think Diego is old enough to start comprehending that his heart health will always be a part of our lives.

I also believe that we have to do our part to maintain our overall health.  Diego went into his surgery incredibly healthy.  He recovered and was discharged in 6 days from a complex operation.  A healthy lifestyle must always be a priority in our lives. 

For now, Diego is actually smiling and thankful to be leaving the hospital today.