Saturday, March 16, 2024

The Secret Sauce

 This evening Lucia reminded me of this blog I started over 12 years ago to document Diego’s heart journey. Intrigued, I opened the blog page and found myself reading the last words I wrote exactly 10 years ago today. The post ended with…”There are hardship and hiccups in life, but never allow these experiences to put fear and anxiety in my soul”. I shuttered when I read this  post. At first glance, this is the struggle I battle today…ten years later. In the past 10 years have I grown at all? Have my life experiences helped me find peace and joy or am I riddled with the same fear and anxiety that I experienced 10 years ago today? 

Life is a strange journey. We face the same obstacles in various facades until we finally learn the secret sauce to take a giant step forward. In the past few weeks I found the missing piece to this strange thing we call life. Working hard and letting go isn’t an either or equation. It isn’t about how hard you work until you surrender and let God’s will be done. It is about working hard every day while simultaneously letting go of fears and anxiety. I am learning that I find peace when I use my talents of grit and persistence for good AND relinquish control. 

It isn’t an easy task to find the secret sauce but when you do it is savory sweet. 

Sunday, March 16, 2014

Life...Out of My Control


There is safety in knowing what the next step will be, or simply having the opportunity to analyze the situation to determine my next move.  However, when life seems to be out of my control; I feel anxious and afraid. 
I set down and wrote the above paragraph on Saturday evening then walked away because I wasn’t sure what else there was to say.  I think it collectively sums up how my family is feeling right now.  Why, you ask? I should back up to the beginning of the year. 
Mid January, we started noticing that Diego was struggling during physical exercise.  At first, we disregarded it, then we justified it by saying he was simply out of shape.  As time went by, it became increasingly evident there was a problem that we couldn’t ignore. 
I moved up Diego’s 6 month Tulsa check up to see if his local cardiologist thought the issue could be cardiac related.  He felt the test results warranted a review by Diego’s Boston cardiologist. So long story short, there was no sense of urgency, but Boston said they would like to run their own extensive testing.   Diego is scheduled for a stress test, Ultrasound, MRI and heart catheterization the first week of April in Boston. 
I suppose I have been emotionally wrestling with Diego’s life being out of my control since the day he was born.  Diego’s heart journey causes me to constantly ponder this fragile thing called life, which we often take for granted.  This is why my daughters’ writings in my last blog posting were so profound to me.  Then today, I set in Mass at the Church of the Madalene listening to Deacon Robert DeWeese’s Homily.  He concluded with, “Keep the eyes of your soul on Jesus and you will find what He promised us at the end of our journey.” 
My take away...Yes, there are hardships and hiccups in life, but never allow these experiences to put fear and anxiety in my soul.
 

Saturday, February 8, 2014

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 16th 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!




 
 

 
 


 

Saturday, January 18, 2014

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!

  

Thursday, November 7, 2013

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!

Sunday, November 3, 2013

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 3rd 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. 
 
 
 
image Segment
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!
 
 
 
 
 



Sunday, August 11, 2013

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.