Tuesday, August 18, 2009

A father's final post

Pre Script
“Lighten Up” was written prior to Elena’s “Celebration” and essentially was written in one sitting, quickly and with no editing. The intent was that it would be posted fairly quickly and closely following the Celebration, but this was not to be. Given the length of Elena’s hospitalization and then the numbness of planning and getting through her celebration it was inevitable that we would have expressing what we were going through. But the finality of it all brought our family to our knees in the days following her passing.

While the finality of the loss is still there, we are slowly finding a way to deal with it and still function. This is especially true because of our son Frankie who is mad because he didn’t get to say goodbye. All I can think to say to him is, “me too buddy.”

Please read “Lighten Up,” and if you are up to it, watch the multi-media presentation.

Lighten Up

Like all parents, I thought I knew my daughter well. But I’m learning so much more about her through this process. Until the final week of her life, I typed up my comments for her blog and Melissa posted them. I really didn’t visit the site and was unaware of the comments that were being posted by so many people. When I discovered they were there I read through them and I found a common theme. So many messages started with, “I didn’t know Elena well,” or “I hadn’t known Elena for long,” but her spirit and enthusiasm for life had inspired them.

With all of the time I spent over the weeks at the hospital I was able to read most of a full collection of Ernest Hemmingway’s short stories. It allowed me to read for distraction between visits to her bedside, yet not be tied to a long book that my attention span was not capable of processing.

After reading all of the comments on Elena’s Blog, I came to the realization that most of us live our lives like a novel. There are many predictable chapters as we wind our way through life. Of course there are marriages, births and even deaths. Predictably there are several chapters for work accomplishments and perhaps an award or two. There is an order, for most of us a fairly predictable order, to the various stages of life. While reading through the many comments by her friends I came to understand that Elena lived her life like a collection of short stories.

She would meet new people, this doesn’t mean boyfriends, it means people, and for a short period of time have an intense relationship and then move on. While she never forgot any of these people, and she always attempted to maintain contact, she was on to writing a new story but never a chapter.

Of course with everything in life there were exceptions. Elena had a core group of life friends that she always stayed in constant contact with. Without surprise, this small collection of life friends was made up of those that accepted Elena for who she was and embraced her free spirit. From them I expect nothing less than that they will be the ones to continue to help us through this life-altering loss. They will always be a part of our family, and we want to celebrate the chapters of their books as they are being written. So keep the wedding invitations, birth announcements and other life celebrations coming.

“Lighten Up Dad” was always Elena’s message to me. While I don’t believe a parent and child could be closer, we did have our differences. The one area where we were the most different was being responsible, and I have to admit that this was a conflict between us for the past few months. Please understand that I have no regrets, it was my job as her father to guide her in life, but Elena would have none of it.

Looking back some people are just meant to burn so bright you can’t look into the light for very long, and that was Elena. The brightest light in our family has gone out forever but she will never be forgotten.

So, for those of you that expressed that you would have loved to have gotten to know Elena better, don’t dwell on it because that just wasn’t her. You were allowed to stand in her light and draw energy from it, but only for as long as your short story was being written. The fault was never yours; it was just Elena’s way.

I can safely say that Elena’s final message to all of us would be to “lighten up”. There is nothing wrong with being career driven, but remember that all that really matters are family, the friends we have, the people we love, the goodness in our hearts and the memories that we share.

God is fully aware of just how much goodness she had and he brought that bright light back to be with him. We will all miss her and for most of you that memory will fade with time. This is OK for it is the natural order. However, for her family and core life friends I know that she changed us for life and I say to you, and ask you to remind me, to lighten up because above all that is what she would have wanted.

Thank you all for your support to her family during this life altering loss.


Post Script

This Blog has taken on a life far beyond anything that I could ever have imagined.

I’ve stated a few times that we would be taking the Blog down but I am learning that there are many people who have drawn strength and meaning from it. I’m not making any decisions now but we may try and find some forum for other families suffering through similar circumstances and include all of this for them by continuing to make it available.

In closing there are some people who I would like to personally thank.

My wife Mary carried the weight of this horrific process by making it easy for me to be at the hospital every day. She put her grief aside to allow me to grieve while she was every bit a parent to Elena as I was. She is the rock that my life is built on.

Then there is my niece Cheri who is a nurse and was our translator throughout this process. Talking to doctors is only slightly more understandable than some obscure Amazonian dialect and Cheri helped us through this while also being her normal wonderful and loving person.

My sisters Connie and Lynne carried me on their backs as well, all while dealing with their own fears and grief. They are the best and no man could ever have better sisters.

My other two daughters, Melissa and Laura, propped me up throughout and were by my side at the end. Laura………. We’ve shared a great deal but having you there throughout was a level of comfort that I could never express. And Melissa what can I say? Having you on the phone several times a day and there at the end meant so much. A father couldn’t be prouder of whom all of his children have become, each so different but consistent in your compassion and love of family. I have a legacy that would be the envy of any father.

Finally, there is my best friend Stan, who is coincidently also my boss. The luckiest day of my life was the day you hired me 16 years ago for that one-year project. Your witness and faith in God have been an inspiration and your steadfastness and caring mean more than I could ever express.

There are so many others that I can’t begin to recognize you all so I’ll just have to say thank you until we meet in person where I will expect a huge hug.

Thank you all.


Friday, August 14, 2009

The video from the service is available online

Thanks to my dad's wonderful boss and friend Stan, we now have the video available online for viewing. This was put together by Elena's step-father Vinnie, and it really captures and chronicles her extraordinary life.

Click here for a medium-quality version better for slower connections

Click here for a good-quality version better for faster connections

Sunday, August 2, 2009

Well, Elena’s celebration was pretty incredible.

To start with there well over 300 people who attended. The church was filled with family and friends, neighbors and some of Elena’s care givers. This support meant more to us than we could ever express.

Elena’s boyfriend Mike, who is a professional musician, sang two beautiful songs and gave a eulogy that ensured there wasn’t a dry eye in the house. Mike’s Dad also revealed just how much she meant to their entire family. Two of Elena’s best buds, Heather and Jeanette, shared special thoughts and memories with us. Pastor “Pete” shared a wonderful message and throughout it all a multi-media presentation prepared by her Stepfather “Vinnie” moved everyone with a glimpse of Elena’s life through pictures, songs and video.

We ended with a meal graciously provided by my friends.

In a few weeks we will close this blog down but not until we create a record of all of your messages. For those that know me, you frequently laugh at my discomfort with all of this technology. That said I can tell you that while this was begun as an easy way to keep everyone updated it became much more. It became a place where we could share our hopes, fears and finally our despair. It also became a place for each of you to pass along your thoughts and memories.

In closing we would encourage all of you to make one last comment. We are comforted by your words and it means a great deal to us. We will make a final post that will include a link so that each of you can view this wonderful media tribute prepared by Vinnie.

Even though we allowed an autopsy to be preformed on Elena it is highly unlikely that we will ever know specifically what took her away from us. What we do know is that these severe upper respiratory illnesses are happening more frequently and most often to people less than 40 years of age. It was reported last week that while pregnant women only represent 1% of the total population they represent 6% of those that are infected and many of these women are giving birth to children who will never know their mothers.

In speaking with Elena’s Doctors her symptoms were parallel with the H1-N1 (Swine Flu) virus even though she did not test positive for this. We are also told that this false negative is not unusual once treatment has begun since many of the medicines tend to mask these tests. It is our hope that through her examinations and treatments some piece of the puzzle will be found that will help to prevent other families from suffering through what we have been forced to endure.

If you want to know more about these confounding illnesses that are affecting so many people please visit ARDSUSA.org

Thank you all for your love and support.

With deepest regards,

The Walters Family and Friends

Tuesday, July 28, 2009

From Ron:
It has been 24 hours and we continue to have trouble wrapping our minds around the concept that Elena has left us. Please bear with me as I try to explain some things about the arrangements.

After Elena passed we gave the doctors permission to study her case and to try and find out exactly what caused her death. If they can find out something that will save some other family from going through what we've gone through there will at least some reason for her passing that we can embrace.

Since the funeral home won't be receiving any flowers for us, it is not possible for flowers to be received or any place to leave them after the service. Given these difficult times there are so many worthwhile causes that could really use the money that would be spent on floral arrangement that it would be a real waste to send flowers for a one hour service. We are asking that in lieu of flowers donations should be made to ardsusa.org or any other appropriate charity.

We will have a celebration of her life on Friday at 1:00pm, followed by a catered meal, all taking place at Florida Bible Church (9300 Pembroke Road in Miramar - map here.

The service and the following celebration is open to all of Elena's friends and family. We are honored that there are several people from Kendal Regional Medical Center have expressed an interest in attending because they were so crucial in giving us the time that we had.

Monday, July 27, 2009

It is with deep sadness that we have to say that Elena passed away at 6:30 this afternoon. Elena was the brightest light in our family and we will miss her terribly.

We have appreciated all of the calls, thoughts and prayers during this time. But we ask for no calls for now. Arrangements are pending but we will post as we determine how to best honor and remember our little girl.

Sunday, July 26, 2009

July 26th

From Ron:
Apologies to everyone for the lack of information over the last few days.

In the form of an update we were finally able to move Elena to JMH Thursday night at 11:30pm. It ended up being a marathon day for all of us as we started at the hospital at 7:00am and didn't return home until 3:00am on Friday. While we were able to get a bed assigned we were unable to get a Doctor with admitting privileges that would agree to have Elena admitted. Mary made some calls and arranged for the transfer.

At the time of the transfer the ambulance was supposed to be equipped with all of the equipment needed to keep Elena stable. Once Elena was transfered to the ambulance they found that the ventilator couldn't handle her needs and they had to manually ventilate her for the 30 minutes it took to get her to JMH.

I'd like to comment on one of Elena's Doctors from Kendal Regional Hospital. His name is Jorge Yadskan and he is the Chief Intensivest. In the very early days we called him Doctor Doom. This was for two reasons, the first was because he was brutally honest at how low Elena's chances were, the other reason was because we couldn't pronounce his name. It became a term of endearment as we came to respect his medical skills and the respect he showed for us and Elena. No matter what happens I will always have a special place in my heart. Doctor Doom came in on his own time to supervise and accompany Elena during the transfer and he was the one who did most of the manual ventilation. This is about the most committed and dedicated healer I have ever seen or heard of.

When Elena arrived at JMH her numbers were actually better than when she left Kendal so we left for home.

On Friday we returned to JMH for the first visitation of the day at 11:30am. When we called the desk they asked if we could wait 20 minutes. That turned into 90 minutes when the nurse came out and escorted us in. Elena was in the worst condition she had been in since June 21st when she almost died. Her Doctors took the family aside and told us that she had very little time to live and that we should say our goodbye's. I don't think I need to explain how devastated we were but we made our calls and over 20 people showed up at the hospital.

In the early afternoon I started to see that Elena was improving all of her important numbers and by the end of the evening she was nearing her norm. By Saturday morning Elena was back at pre-move strength. Her sister Melissa arrived yesterday and I can tell you as a father what a comfort it is to have her here. It's now Sunday and she is holding her own. Melissa is spending the day with her and giving Laura and I a day to rest and get ready for tomorrow where we plan on meeting with her doctors to see if there is anything that can be done. She is still in extremely grave condition but if she can gain any strength there is still a chance that she may be able to get strong enough to go through one or another of the treatments that are available at JMH.

I'm sure that you will all understand how hard this is on all of us, and all of you that are following her progress. Regardless of what the Doc's say Elena is showing that she is not ready to leave us. Please keep praying.

The Walters

Thoughts from a big sister

I awoke this morning, and for a moment I hadn’t remembered what was going on. For that brief moment, all was right with the world. And then I opened my eyes and saw that I was in my dad’s house – in the bottom bed of my little brother’s bunk beds with his Spiderman clock above my head (which any other time would be comical). And for a moment, I was just here visiting. And then I really opened my eyes and saw a closet full of my sister’s clothes, and I remembered. I was immediately aware once more of why I’m here. And I cried.

Then I started to thumb through the clothes in that closet, and I saw clothes I recognized – not from seeing her wearing them in person, but seeing pictures she posted online that I viewed from afar. For as many years as I can remember, I have watched my sister live her life from miles away. And in that instant, it felt more wrong than I can even express. As I thumbed through the closet, I saw dresses she wore on a night out on the town and then there it was - the dress she wore for my wedding last summer, the last time we were all together, long before all of this started.

I don’t know how it feels as a parent to watch your child go through this, but I know as a big sister – someone who is supposed to have all the answers – there’s an overwhelming sense of helplessness. I’m the one who is supposed to have the advice and the answers. And right now I have none of either.