Celebrating Tony

Tony's Birthday is next week.  He would have been 40. My family got together over in Alabama to send off purple balloons (Cystic Fibrosis awareness) in his honor. We couldn't make the trip. But we celebrated Tony's life with a send off of our own.. We love you Tony. Longing for the day we can all be together in one place!

When words are not enough...

      

Tony and me at my wedding reception.  He greeted my guests as my "cousin Bubba"

Confession:  I want to be a hero.. I want to be the person that has all the right things to say at all the right times.. I want to be able to write my little post and it somehow be so amazing that everyone turns from it with a smile on their face to go on with their lives to live happily ever after...I want to write something that inspires people to live stronger and be better.   I have that post sitting in my drafts... It's title: "Someday I Hope You Get the Chance to Live Like You're Never Dying".. But we all know it's not that simple.  It's supposed to be a play on words.. I want to tell you what an inspiring life that Tony lived.  One where he never pitied himself.  One where he embraced each day like it was his last while all along never believing that day would ever come.  One that made doctors shake their heads in disbelief.  One that made everyone want to embrace the God that he loves that gave him a hope we could not understand.  A life that made parents hold their children tighter and husbands love their wives stronger.. I want to tell you about my Aunt and Uncle's strength.  A strength that helped Tony fight way longer than anyone thought possible.  A strength that enabled them to let go when it was time for Tony to move on to a new phase in life.  And a wisdom that allowed them to pull in or give him a push when needed.  I want to tell you about their love.. The kind that actually loves people into being better.. The kind that didn't result in just one child embracing life but three children that embraced life and embraced the kind of love that is so unreserved that it opens a person up to a pain that is almost too much to bear.  And, I want to tell you how they embraced three more children as their children found their loves... .  I want to tell you about the beautiful child that was given to he and his wife, through a series of unlikely events, too coincidental  to be coincidence.  I want to tell you about the way he loved that boy.  I want you to know that Tony was not special because of his disease.   He was special in spite of it.    And, while all of these things are completely and totally without a doubt true, they are anemic.  They only give you a glimpse of a picture that can not be described.  The problem with the human language is that I find myself trying to explain such abnormal, extraordinary things with such normal, ordinary words. 

I walked out of the visitation on Wed. night

and saw this rainbow right over the funeral home and

made a mad dash for my camera. 

Chloe said it was "Tony's rainbow". 

PS: It had not been raining..

The truth about me is... I'm angry..  I could tell you what an awesome service it was and how it tied everything together with a neat little bow and how we all went away with a warm and fuzzy feeling in our hearts.  But that would be a lie.. And leave it up to me to say all the things we're not supposed to say.. The service: beautiful? yes. Honoring? absolutely!  Was God there? I have no doubt.. But, while I wanted to thank God for the beautiful life that Tony lived,  the selfish part of my heart was screaming, I hate this.  I am angry..  I know what you're thinking.. I'm the preacher's wife.  I should never have doubts.  Especially not about God.. And you know what?  That makes me even more angry.  And here's some news that shouldn't be new.  God already knows.. It's not like I could hide it from him anyway.. But just to make sure He knew, I told him.  I'm angry that my family is hurting and that there's nothing that I can do.  I am angry that we didn't get our miracle the way we wanted it.  That I had it all worked out in my mind, the people that needed their faith strengthened by seeing a miracle (myself included).  And as He so often does, God said to me, "Dana, I don't need your help".  And, that makes me angry again.. I'm angry because, though we all want to say that time heals all wounds, I know that it doesn't.  While time may teach us how to live with the wound, it will never completely heal it.  And I'm even angry at the suggestion that it should.. I'm angry at myself for being selfish.  For not just being okay with letting him go and being healed.  I'm angry that I'm scared.  That people will be right.  That everything will be okay.  Because I'm not okay with just okay.  I'm angry that faith has been confused with acceptance.  That faith has been portrayed as believing without ever doubting..  I'm angry that I know that this won't be the last time I feel this kind of pain.  Or worse, I'm afraid that I will give into my fears and guard my heart so that I will never have to feel it again.  And I'm sorry.  I'm sorry that this is left open.  Because I just can't bare to close it. 

And just in case there's someone else out there that has those same fears.. Just in case there is someone else other than me that has had the ridiculously stupid thought that they'll try to keep themselves from everything that is good about life so that they can save themselves some pain, I'll share a quote that I found as I was desperately searching for words of comfort:

"Do you want me to tell you something really subversive? Love is everything it’s cracked up to be. That’s why people are so cynical about it. It really is worth fighting for, being brave for, risking everything for. And the trouble is, if you don’t risk anything, you risk even more."

—Erica Jong

And so here I am again, raw and open.. Because I can never keep up a show of being something  I am not.  I have no doubt that we will come out of this deep abyss even stronger..  That the prayers and support of those we love will pull us out.  And I know that through our screams we will continue to hear God whisper,  "I am here".  We will soon laugh about the good times and marvel at the miracles that came from Tony's story.    But, for now, the abyss is deep and it is dark and I am weak and only time can teach us a new way of living..  So please give us grace as we learn to make peace with our new pain..  

From the dove release at Tony's funeral.

It has to be the grace of God that allowed

me to catch this shot.  Once I was asked to do it,

I got so nervous and was shaking so badly at the thought

of only having one chance, I just knew that everything

 would come out blurry. 

               Previous Posts on Tony:

http://danaelaineellis.blogspot.com/2010/05/tony.html

http://danaelaineellis.blogspot.com/2009/07/im-praying-for-you-dana-i-cant-imagine.html

Tony...

This is my perspective from my little corner of the world.  I want to make clear that I do not think that this story is about me.  There are a group of people over in Birmingham Alabama that have tremendous strength and faith that I only hope of one day obtaining and, I  know that I will, because of the example that they have displayed for me..  Please also know, that a lot of this is what I've concluded from information coming from here and there.  I have read countless medical journals and even e-mailed back and forth with several pulmonary doctors but still have only understood half of what I've been given.    But, I keep being asked about what's going on and I keep waiting on a complete story to tell.. A story of healing one way or another.  But, for whatever reason, Tony keeps hanging on.. And it makes me believe that for some reason that I don't understand, the importance is in the fight.

I have written about Tony before.  He was born with Cystic Fibrosis and had a Lung Transplant in July 2009.  You can read previous posts that explain those situations in more detail HERE.  Around Thanksgiving, he went into the hospital with an infection.. He had many treatments going in and out of the hospital and a few surgeries, one even removing the part of the lung with the infection.  When they removed a part of the lung, they thought they had taken care of the infection..   He went back in for a check up a few weeks ago and found out that the bacteria was growing back.  We have since learned that the bacteria is
burkholderia gladioli.  Until somewhere between 1996-1998, this bacteria was only thought to exist in plants.  They have since learned that it is a common bacteria in adult CF patients.. Apparently, there are different bacterias common in CF patients at different ages.  This particular bacteria typically lies dormant in the airways and sometimes is able to take hold after a lung transplant because the patient is immuno suppressed. 

I think it's  been a week now since I got the first call.   It was either Monday or Tuesday.  The days are all blurred together.   My mother called quite hysterical saying that it didn't look like Tony was going to make it.  The doctors had said that they were stumped.  They were calling other transplant centers to ask for suggestions but they had tried everything they knew to try.  The antibiotic was killing the bacteria in the culture, but not in his body.  They spoke with some doctors in the pulmonary department at the University of North Carolina and began a new treatment.  On Wed., they made the decision to put Tony on a ventilator so that he could rest and give the new treatment the chance to work.  The family was called in several times because his stats had began to drop and then they would rebound again. 

Through this all, I've been torn with what to pray.. It has been a rollercoaster of hope and doubt, fear and bravery, sadness and yes even some happiness.  But, mostly bittersweetnesses.  We all believe in an afterlife better than we could ever dream of.   We know that if anyone has lived a life worthy of God's presence, it would be Tony.  We know that through Tony, God has sent us two precious angels (his wife and son) that will help carry on his name.   Yet still, I can't give up hope until his heart stops beating.  And then, it would only be a new hope..

My cousin Tracy and I talked for a long time yesterday and she told me about a prayer that she had seen someone else write about him. It went something like this: Our faith longs for your will and knows that your will is best but our hearts pray for healing. We felt like that adequately expressed our thoughts and it has become my prayer as well.

I hadn't slept for more than a couple of hours for days (this is nothing compared to what the family that is there with him has gone through) but, I knew that if he does go (I just can't bring myself to say "when" he does go), I couldn't drive over there on that little amount of sleep. Plus, my family here all had a cold a couple of weeks ago and mine is still lingering in my chest.   I don't think I'm getting over it because I haven't had any rest. So, I took something and went to bed at 8:00p.m. and woke at 5:00 a.m.  There is so much more to say but my heart cannot find the words to express my feelings.  My family covets your prayers and thanks you for the love and support we've felt from all over the nation. 
 
You can read Tony's wife's caringbridge journal entries that give the latest updates HERE.  What a miracle she is!  Our family is so blessed that she chose us to be hers..
 
Blessings,
 
Dana

I'm praying for you Dana. I Can't Imagine What you're Going Through...

Those were the words that came from my Aunt Nancy in an e-mail. I think I heard an audible laugh come from myself when I read those words.. They were written in a response to an update on Chloe's heart condition. What I thought but didn't write back, was that she was the precise person that came to my mind when I thought of the one person I knew that probably did understand what I was going through. And, that my greatest fear was that I would be her, living the life that she has lived but with the inability to live it as gracefully.

I like to think that it was my age and not insensitivity that caused my lack of understanding of the severity of the situation. It never crossed my mind that Christmas was probably much different for her and I wonder now, if she wondered, (still wonders) if every Christmas she enjoys with her son would be the last. Maybe she just never allowed herself to have those thoughts. I'm not sure..

Before I explain myself, I feel the need to express that I am looking at things through an altered lens. My details may be off.. It's information that has been told to me here and there in pieces. None the less, they are the pieces that form the picture in my head. I am the youngest of 15 grandchildren. Ten on my mother's side and five on my dads. The older I get, the more I realize what a different picture that I see as opposed to the picture that my older cousins see. They remember things more clearly than I. They see a younger version of everything.. My cousins disease was old news by the time I was old enough to understand that something wasn't quite right. And honestly, they made it look like it was easy, like it wasn't a big deal.. But as I've faced things with my own children, I've asked more questions, and with every answer, I'm always amazed.

During the two week wait that we had to find out what was going on with Chloe, I thought about them a lot. I thought about the wait that my Aunt Nancy must have endured many years before and of the devastation that she must have experienced when she found out the results and I selfishly thank God that I don't know that devastation first hand because our results turned out much differently.

When my cousin Tony was three months old, he was diagnosed with Cystic Fibrosis. The prognosis was grim. In the beginning, they said that he wouldn't live past six. When he made it past six, they said twelve. I think they eventually stopped giving him a time line and just kept hoping against hopes that he would keep outliving the odds. My aunt and uncle were determined that he would live the most normal life possible. My mother recently told me a story... Tony was a very small child and weak from the disease. But, still, he wanted to play football. My mother said that she was sitting next to my Aunt Nancy at one of Tony's football games, when a much larger kid hit him hard (at least hard in a mothers eyes). My Aunt Nancy scared out of her mind stood up and said, "no, he can't do this. He's too small". My Uncle Gene took her by the hand and sternly told her to sit down, explaining that he COULD do it. And so, she sat there quietly and still. With big tears rolling down her cheeks. I remember them joking about it being time for my uncle to "beat" Tony. I didn't realize then that it was a mode of survival. My uncle had to lay him on his stomach on a regular basis to beat him on the back to loosen the mucus so that he could breath. There were many hospital stays and many medications. They pushed him to eat when he didn't want to because he felt so bad. He trained his lungs so that he could hold his breath the amount of time it took him to swim their swimming pool two and a half times. I walked beside him at a cystic fibrosis walk-a-thon when I was a teenager. I had a hard time keeping up (did I mention I ran track in college?) He beat the odds, all of them. He graduated high school with honors, got a great job, married a wonderful woman that handles his disease like God made her for that, and adopted a beautiful little boy.

As in true character of the disease, Tony's condition has continued to worsen. His hospital stays have become longer and the complications have been greater. He eventually got bad enough to be put on a list for a lung transplant. The condition has to be extremely severe for a person to even be considered for a transplant, for the benefits of the transplant to outweigh the risks of the surgery. That has been a painful process as well. First the decision to have the transplant and then, the wait, and many false calls. When I was visiting my family in Alabama a month or so ago, they had one of those false runs. Tony was number two on the list. The person in front of him needed both lungs and a heart. If the heart wasn't good, Tony would get the lungs so with every donor that came in, they prepped Tony too. Just in case. The false runs were no surprise. They had been warned to expect them. But the surprise came in Tony's reaction to the false runs. I guess it wasn't that much of a surprise to those of us that know him. But there is no doubt in my mind that the nurses who provided his care have seen Jesus. I talked to my uncle after one of those false runs. After they had prepped Tony for surgery, shaving him from chin to toes, on the way back to his room to wait for the verdict, Tony stopped to pray, not for himself. But, for the guy that was number one on the list and for the family of the donor. I'm sure I no longer need to explain to you what a sweet, unselfish soul that lies behind those weak lungs. And I can't begin to explain to you the faith that I have seen their whole family exhibit through the whole ordeal(mom, dad, and sisters too), always thanking God and trusting him while waiting for his perfect timing. They have been through so much. In the middle of all the false runs, my aunt fell while she was at the hospital and broke her shoulder in four places. There have been many more hiccups along the way and still, through all the trials they've faced, they haven't taken their eyes off God. And I have no doubt that lives have been changed because of their influence.

I can think of very few other things that I could be more excited about saying more than: It looks like his perfect time has come. This afternoon, they got another call. With great hopes and guarded hearts, they headed for the hospital one more time. He was prepped once more and waited once more to find out that this time, the lungs are good. As I write this, Tony is a few hours into an eight to ten hour surgery. I don't know how many years it's been since he's breathed a breath without being in pain. But, I know one thing for sure. He will never take for granted an every day blessing that most of us never think twice about.

He still has a long road to recovery ahead of him and our family does covet your prayers tremendously. I will update as soon as we get more news.

And just one more thing.. If you aren't an organ donor, please search your heart and please remember that donated organs are always used to save someone's child.

Blessings,
Dana

EDIT: 4:30 a.m. 7/22/09-- The lungs are in and working great. Tony's wife reports already able to see a difference in his color and breathing. Thank you all for your continued prayers!

Update: 12:07 p.m. 7/22/09. Tony has been removed from the ventilator and is breathing on his own! What a blessing! Please continue for his body to accept the transplant.