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I am writing this now not to make anyone, those rare few, reading this to be depressed. Nor do I seek sympathy.  But I hope that through this writing I can organize my storming spirit into a clear and orderly flow.  I have been reading about grief a little, about grace and God’s goodness, and the blessings for the faithful that come through trial. As God works all things, even tragedy, for the good of those who love him; so we hope and so I wrestle to believe.  But I wish to believe this, and I have committed my way to Him despite all circumstances.  As he loves me unconditionally, dying for me, giving up HIS child for my sake… can I do the same?

In that spirit I review, about two months ago our daughter Josephine passed away, dying of respiratory complications.  The day before she died we could see that she was suffering – struggling to breathe.  The doctor and nurses came to make a home visit.  They gave us a small amount of morphine to help keep her relaxed. My heart ACHES in remembrance of that night. Distributing those drops of morphine into her mouth, with each administration signifying a closer step to her end.  Josie herself wasn’t sleeping well, but drifted in and out of conciseness as her little coughs pushed her to exhaustion.  Right now I write this with large tears falling into my lap. 

Her face so soft and sweet, gorgeous.  She looked up to me with an devastating expression, as if to say “Daddy I don’t feel good.”  I held her all through the night, watching curious George cartoons and letting her know I am near.  And then an ounce of hope came when she began to sleep in my lap.  I carried her to her bedroom, about three in the morning, and I lied her down to sleep.  Her head propped up by the pillow, her one and three month year old body so weak, so deprived of muscle tone, limp, helpless.  I sat there for a few moments along side her.  But then turned in my thoughts and began doing what I am doing now, I began writing.  By doing so I had hope to temper those emotions I was feeling.  I wrote an entry titled “Over-sized Death Bed.” 

You can read the entry I wrote below.  However, it is not complete.  I don’t remember my thoughts I had then, or how to complete them – even though in reading the passage you can see that it may not need to have anything else added.  The reason I could not finish expressing those thoughts is because I turned to hear the change in my daughter’s breathing.  It was but only a few minutes when she went from heavy breathing to gasping.  The thought of the morphine pushing her into a weaker state struck fear into me, is there something wrong that we did?  Is there something I could do now?  I went to her, my hands over her, hovering, not touching her, I felt helpless.  Her eyes opened, just barely, looking at me, struggling to breathe.  I could see her lips turning blue.

Instantly I rushed to our bedroom where Lena my wife was sleeping.  I woke her and told her to come now.  We went back to Josie’s side, Lena could see what was happening, no explanation was needed.  Together we sat, sang to the song “Jesus loves me.”  And watched our daughter slowly take her last breaths.  She turned white and silent.  And the world froze. 

Lena began to sob, she turned away from our baby and I held her crying face into my chest.  My sister sleeping in the living room came, hearing our groans.  She also needed no explanation, and her loving presence wrapped us in comfort.  Everything was happening so fast.  Phone calls were made, my father came, nurses came, Josie was pronounced at around 7:30 am.  Today and now I rage with a sense of helplessness and frustration, anger boils in me that I did not try to do more.  I wrestle with the understanding that there was nothing else I could have done.  Prolonging her life would only have tormented her more. But still… did she want to be held in those last breaths? Was it better to leave her lying down?  Oh how would my daughter have wished to just be held by her daddy at the last moment!  To feel the comfort of a loving father…  Oh how I want that for myself!  Heavenly Father where is your spirit of comfort?!

I reflect often on that last night, perhaps I torment myself in doing so. I am haunted by the beautiful face of my daughter. In my dreams she visits me. I awake with the memory of her gorgeous eyes and then her cold stare, as her cheeks turn blue to match the color of her lips. I pray that in expressing these images, that in sharing them, they will be resolved and processed. Doing so I hope to find peace, and go back to my normal self. But I am struck in the gut with a realization: I will never be the same again. I will bear the wound and loss of Josie forever.

I hate self pity, I hate depression, I do not want either of those things in my character.  I want freedom, joy, and a new phase of strength and adventure.  And in time I know this wound will heal.  In time I will move forward, and perhaps there will be a day when I do not think about Josephine at all.  Oh how I hate myself for that… But if I cannot give her up, then I cannot give the world up, and then I cannot have Jesus.  For I must give up everything for the sake of knowing him.  Even my daughter.

So here the conclusion lies, the end of this entry.  I had no idea on where I was going or where I wanted to take you in writing any of this.  Reading over the above paragraphs fills me with a satisfaction, knowing that it is said and done, it is now all out of me.  With a dark feeling, with a sick feeling, I fester, I rise up, I wrestle, and I hope – that my emotions and sadness, like Job, in suffering, that I will be honorable, honest, and in the end in step with what I am meant to be and whom I wish to become.

Reflecting

More than a month has passed since our daughter has passed away, gone to heaven to be with Jesus. We still miss her of course, the process of grieving will be long and we will need more time, how much though I am not sure, perhaps we will never truly stop hurting. But I know I need closure. That is why I am excited for Lena’s mother to come to El Paso, to visit us, hug and care for my wife, and for us to be together and cry together.  We will choose an appropriate time and place to spread Josies ashes, I still can’t believe I am preparing to do this.  Each moment is hard to perceive, like a dream, like it isn’t some other person doing this… not some movie or story, but this is real, this is my daughter, my life.

I am trying to lean on Jesus, but my own self keeps getting in the way.

 

Dear friends and family, we wish to inform you of the passing of our baby girl, Josephine Olivia Villarreal. Josie was born in Perm, Russia on February 1st, 2011. Unknown to us, our baby girl would inherit a genetic disease known as Spinal Muscular Atrophy. At six months of age, she was diagnosed with SMA type 1. In order to care for our daughter, we left the mission field in Russia and moved to El Paso, Texas. We have been very blessed by the support of our church, friends, and family. We thank you all for your constant prayers and love that you have shared in this with us, and more specifically with Josephine.

Josephine was a bright and intelligent little baby girl. She loved to watch Curious George cartoons and read Dr. Seuss books. Josie was always so patient and cheerful throughout the torments she had to endure, from riding in airplanes to living with her disability, she almost never complained. Josephine loved to listen to music and ride in her stroller on long walks. She loved people and the smiles of strangers. We are so thankful to God to have had the opportunity to take care of one of his special little angels.

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For the last couple of weeks Josie’s breathing had become very labored. Her swallowing was becoming more difficult, and we could tell that her dying process was progressing. On Monday night we were taking turns caring for her. She had not eaten or drank for 24 hours, and we could see that the end was near. In the early morning I could see her lips turning blue and her eyes rolling back. I went to wake Lena, and we came and knelt beside her. It was a moment we were happy to be able to share together. Singing to her the song, “Jesus Loves Me” and telling her over and over that we loved her, Josie passed away at 7am Tuesday morning.

We had a viewing at our home all day on Tuesday. It was comforting to have so many of you come and pay your respects. Josephine brought so much joy to all who met her, and she truly was and is a reflection of the beauty and grace of Christ. We invite you to join us for a memorial service for Josephine on Friday at 5:30pm at Coronado Baptist Church (501 Thunderbird Drive El Paso, TX 79912). Dinner will follow so please do not bring food. We will be glad to celebrate the life and new life of our baby Josephine alongside you. Thank you.

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Just the other day I sent out our latest newsletter.  If I knew then that Josephine was going to progress in her dying process so rapidly in just a few days I would have written something perhaps a little more inspiring.  The topic of the newsletter was “Celebrating Joy.”  I talked about despite the challenges we face, that we need to hold onto the moments of joy we do have and celebrate them, giving thanks to God.  So in the midst of the valley of the shadow of death let me declare what I am thankful for right now. 

Lord I am thankful for an over-sized death bead for my daughter.  In our guest bedroom/office/baby room, is a queen size bed where my daughter Josephine sleeps.  It is big enough for Josie to lay down and for both her Mother and I to crawl into or sit next to her.  For over 24 hours now Josie has not stopped coughing, and is consistently getting weaker. 

 

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I left in the middle of writing this to check on my daughter.  I turned and she passed away.

I wanted to write a post about my current feelings, but that would be way to boring to read about.  As a father watching his daughter slowly suffocate to death brings emotions that are not very relate-able to average reader, or so I assume.  Today was a hard day, I felt not very productive.  In fact for about a month I feel like I have done almost nothing that could result in true value.  I was siting with a friend, Joe, and discussing this very thing, over some salty chips and beer.  He reminded me of a truth, that our value is not placed in what we do, but who we are.  Primarily who we are in Christ Jesus.

So to continue this post I just wanted to discover a few things and bring them to light, for myself and for who ever else is interested.  First of all the basic meaning of the word “Value” or “Worth” is described in the dictionary as the basic regard or importance an object deserves, or the justification of it’s existence.  When placed on items that are “priceless” like a historical artifact or more so the life of a person, we truly begin to understand that the importance of something does not always equivalent to it’s usefulness.  Little good does a piece of fabric from an ancient robe, and little productivity does a sick baby have that has a life expectancy of 2 years. 

This brings about ideas of euthanasia, abortion, etc.  Those ideas are wonderfully accepted if the worth of a person is based on their productivity.  That brings back the world of the Spartans, casting away the weak so the survival of the fittest can rule.  

I don’t want to live in a world like that.

I went to a Men’s Breakfast meeting and shared some about who I am with other men from my church.  I shared about my family coming from Russia and now living in El Paso, about my daughter’s illness and her prognosis.  It was a good meeting filled with genuine guys who just wanted to grow in their faith and spend some time praying for each other and build friendships, plus a free hot breakfast wasn’t bad either.  At my table when we shared prayer needs most of the guys looked around and said something similar to this, “Shoot I don’t really have any prayer needs, my life is going pretty good. I really can’t complain after hearing about whats going on with you and your daughter.”

 

For those of you who do not know about Josephine let me explain some things, to put it bluntly, she is dying. Her breathing muscles are starting to fatigue and every day it becomes more difficult for her to swallow.  The name of her condition is Spinal Muscular Atrophy.  On Sunday she stopped breathing while in Day Care at Church, and the ladies there called 911.  It was our first time taking Josephine to the emergency room, and quite a scare.  She recovered and we got her oxygen levels up to where they needed to be before we went home.  I invite you all to come around us and hold us in friendship and love, we need it.  And if you have a desire to spend time with Josephine please come and see her. Unfortunately we can not say when the Lord will be taking her home, it could be a few weeks or months to a year, we just don’t know.

 

But as I sat with the men at the breakfast meeting I told them something that went like this, “All Pain is Personal, don’t wipe aside your prayer needs. Everyone goes through their own struggles.”  I remember a chapter like this from the book “The Case for Faith.”  I really wanted to pray for these men just as much as I wanted prayer from them.  I wanted to pray that God would fill them each day to do the things they knew was right, in work, in leading their families, and in their own personal pains and trials.  All pain, sufferings, and trials, are all personal for the one going through them.  We as onlookers will at times feel connected to the event, that God has abandoned us because there is suffering in the world.  But my pain is personal and I feel God along side me even now as we go through it.  Then also people will often think that there is nothing we they can do to help, so they do nothing and say nothing.  Perhaps in some degree this is true, but not entirely.  Looking at Christ as an example, we should be comforters, walking with each other in love and prayer, as he comforted those around him, so should we comfort those around us.

 

I remember in the book of Job, his 3 friends (not perfect friends, but still friends) came to see Job.  They didn’t rush to him in comfort with useless words or gifts, but they didn’t run away not knowing what to do either.  They sat with him, comforting him in silence for seven days.  Job 2:11-13

 

“Now when Job’s three friends heard of all this evil that had come upon him, they came each from his own place, Eliphaz the Temanite, Bildad the Shuhite, and Zophar the Naamathite. They made an appointment together to come to show him sympathy and comfort him. And when they saw him from a distance, they did not recognize him. And they raised their voices and wept, and they tore their robes and sprinkled dust on their heads toward heaven. And they sat with him on the ground seven days and seven nights, and no one spoke a word to him, for they saw that his suffering was very great.”

 

Some people reading this may think that I am giving advice in how I wish to be comforted, and that may seem arrogant, perhaps it is a little, but the truth is that I and Lena are searching for our true friends. This is the most difficult, terrifying, and tragic experience she and I have ever suffered, and I hope the most tragic we will suffer as a family.  That is to see the slow suffering and death of our baby girl.  And this trial by fire is revealing those golden companions.

 

And as I look upon my friends who go about their daily lives, who have their own personal goals and struggles, I hold no judgment upon them. I love them. Pain is personal, and people are afraid in how to act or care, some don’t know what to say, so must simply say, “if you need anything just call,” a very general but kind gesture.  Yet surprisingly, those who do come around and do call, and do care for us, and love on us, and sit with us, and pray over us, are the rare unexpected few that I hardly know.  My heart saddens that my old circle of strong men of God which I once knew before I left for Russia does not come around.  But I rejoice with the new companions and family that is slowly building around us.

 

And as for me, I apologize to you all for I too am not always a good friend.  For those who are also going through trials and need comfort forgive me of my selfishness and lack of presence in your life.  Also forgive me of not taking initiative to inform you more of what is happening with us. There are too many family members and friends, to call and simply say, “Hey were in the emergency room yesterday, pray for us.” I know many of you wish to be informed of how Josie is doing, but it is hard to regurgitate the happenings of her suffering over and over.

 

All pain is personal.  Lena’s pain as a mother is personal and different than mine.  She being away from her home country and away from her mother and brothers.  Her pain of seeing Josephine choke and wheeze for breath.  And Josephine’s pain is personal, her own little understanding of what she is going through.  But my heart melts at her smile then breaks at the knowledge of her end drawing near.  We have decided that we will not try to prolong her life.  We will not get oxygen for her or do anything invasive.  We will not do CPR or any resuscitation.  It was a challenging decision to make, but as parents we decided that the more we try to make her comfortable, the longer we are prolonging her ultimate suffering. 

 

I am not sure how to end this… note.  But I hope these thoughts and feeling do not offend anyone.  I hope you can be encouraged in some way and perhaps be enabled into a role of comforter to whomever is around you.  If their pain be great or small, the wisdom of how to comfort is a good lesson we should all learn.

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