My family and I were introduced to Sophia Florio this past Saturday at the fantastically organized Great Strides CF Walk. Based on all the super fun photos of her on Facebook we thought we were prepared for her super cuteness, but it turns out we were not. I think I bordered on the creepy because I kept saying she was so cute. I must confess that I was not entirely sure how to interact with her. I think it might have been the “no touch” policy (in place to protect her from any exposure to germs) conflicting with the crazy urge to hug her.

As I eluded in the previous post, being a father had -for me- already placed the reality of her condition in a palpable context, meeting her made it even more real. She showed an immediate interest in Annaly and in the picture to the right you can almost see the fascination on her face. (FYI Click on the picture to enlarge) Bryan mentioned her fascination stems from her lack of interaction with other kids, her condition makes daycare and similar surroundings difficult. I must say that Annaly was being a stinker that day, because she was still sleepy and somewhat hungry and although Annaly was giving Sophia the stink eye, Sophia was still rockin’ the happiest of faces. Sophia was wearing the team shirt which was bright yellow and winning smile. All I could think about was how life is harder on her, she has an argument for being fussy or crying. Yet she could have instigated a supernova with her smile. It was a lesson in humility among other things. On that day, she was pure sunshine and I am better for it.

At this point, I think you get that I was appropriately enamored with that little girl, but I think everything was made better by Bryan’s obvious passion for her. There is a deep love in that family and -if I can be so bold- I can recognize that kind of love because of my own family. Bryan and I talked for most of the walk and it felt as familiar as our friendship was in High School. No doubt we are both different people these days, but it I’ll confess it made me extremely happy that our friendship was still there underneath everything. The feeling is probably more analogous to finding 50 dollars in an old pair of jeans, like a combination of luck and gratitude. What intrigues me the most is how being there and meeting his family made me feel -in addition to everything else- proud of him. Not the kind of proud that stems from involvement, but the kind that is simply glad to know him, to know his precious little girl and in return to be known by them.

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You might be thinking, Why Tee-Ball? There are two major reasons we started with Tee-Ball. First, Cheryl has a strong desire to see Mike play Tee-Ball due to it’s overall mega cuteness. Second, he’s Puerto Rican and I don’t want to brag but -in general- we Puerto Ricans rock at baseball (me excluded) so why not start with the sport where the odds are in his favor. He didn’t last very long but he’s three. We had a blast anyway. The best part was when he -in true three year-old form- promptly transitioned from Tee-Ball to playing with dandelions in such a way that you would have thought that blowing on a dandelion is what your supposed to do after rounding first base. Enjoy the pictures below (click on the arrows to cycle through them, click on the actual picture to see it full size). For those of you with access I have a zip file with these pictures on the downloads page.

I met Bryan Florio my freshman year of High School on the first day of school. We shared one class together, J.R.O.T.C. At that time I was determined to be the kid everyone liked and as a result I would have jumped off the roof if someone told me everyone would love it. Bryan however followed the beat of his own drum. As anecdotal proof I submit the story of how we first met. I had walked into J.R.O.T.C. and happened to sit down behind him, I was late (imagine that) and the only seat left was in the second row of tables. I chose not to pay attention to the instructors and proceeded to make mocking gestures to the guy behind me about how Bryan was dressed. I realize that the idea of me mocking anyone is likely to astound all of you…not. However, in my defense Bryan was wearing socks with sandals. I’m not sure that he ever noticed me mocking him, but I do -vividly- remember him putting me in my place when I, high on the attention I was getting from everyone else decided to speak my first few words to him. “Hey man, my name is Luis. Yours?”  I said. Not that I wanted to actually go through the awkward teenage meet and greet ritual. He responded “Bryan Florio”. I said “Umm Dude, wearing socks with sandals is nerdy.” and he replied “I don’t care what you think”. He said it rather intensely. So much so that I immediately admired him and he never got rid of me after that, some would say  we were inseparable.

 We were -in my estimation- the truest example of what best friends could and should be for 4 years. Then college time came around and we went our separate ways. For the life of me I cannot come up with a good reason for why we never carried our friendship forward. Perhaps teenage inexperience? I know that I did not come from a family of means and although Bryan parents are not Bill Gates rich, they were able to afford their children many blessings. Bryan always shared his blessings (except for the chocolate cookies with powdered sugar from the cafeteria) and I never had much to give back if anything. I’d like to say that I was considerate enough to be aware of the imbalance, but the truth is our friendship was so easy  that its clear now I took his generosity for granted. As you can imagine, good friends fight hard. They can see through each other and sometimes they forget to hold back punches. Plus, I’m an ass. So in review, maybe we do have a good reason. 1. I made him feel used and 2. I was an ass. Four years of that can wear on a teenager. So Bryan if you are reading, I’m sorry. I can honestly say that my heart was not where perhaps my actions were suggesting they were. When I got married in 2003, I lamented you not being there as my best man. I should have had you and Josh up there with me alongside my brothers. Ahh! Enough of that. The whole point of bringing that up, is that -although it may not have been at the front of my mind- I never stopped caring about my first real friend.

So along comes another ass (and I’m speculating based on a movie) named Zuckerberg and he invents a website which leads to -years later- Bryan and I reconnecting via Facebook. Through Facebook I learned that he is married to a lovely wife named Jackie who seems to be as mad about him as he is to her. I also learn that he has a beautiful daughter named Sophia and that she lives with Cystic Fibrosis. I have a son (3yrs) and daughter (1yr) and it only took me a second to imagine them in Sophia’s stead and I in Bryan’s. Although I could never fully understand what Bryan and Jackie face, I immediately felt a great deal of empathy and sympathy.

Cystic Fibrosis (CF) is not something I am completely educated on so I think it best to provide you with an excerpt from something Bryan’s mother wrote:

Cystic Fibrosis is a genetic disease that affects 30,000 children and young adults in the U.S. CF causes the body to produce abnormal thick, sticky mucus, which clogs and interferes with the digestion. This mucus holds onto harmful bacteria which can lead to life-threatening lung infections. On a daily basis, Sophia endures 30 minutes of respiratory treatments and chest physiotherapy to help move the secretions in her lungs. In addition, she currently takes 18 pills a day, as well as a CF-specific vitamin supplement and additional salt, to help her absorb the nutrients in her food. CF is the #1 genetic killer of children in the U.S. The median life expectancy is 37. There is NO CURE. Sophia is the healthiest right now that she will ever be.

Let me reiterate the last few sentences as I think they capture the magnitude of what CF brings to a family like Bryan’s. Also, let me apologize in advanced, I will likely be guilty of being indelicate with the following. “The median life expectancy is 37. There is NO CURE.” This means that Bryan and Jackie wake up and face mounds of research telling them that right now they will likely outlive Sophia. It probably goes without saying but this is a parents worst nightmare and nothing is more paralyzing than that fear. Imagine having to prepare for that eventuality should medicine not reach a point where a CURE can be formulated. Moreover, as she puts it “Sophia is the healthiest right now that she will ever be”…

I have read about a time where polio placed families like Bryan’s in these heart crushing scenarios with little to no hope. The paranoia was so great that they once believe polio was brought on by ice cream. However, the dedication of a scientist proved that polio can be prevented. Today, there are scientists emulating Jonas Salk  by diligently working to bring about the demise of this condition. All they need is to research, study, test, and build tools against it. I am not a scientist, nor will I ever serve the world at the scale of someone like Dr. Salk. I can however, serve those who can bring freedom from CF by offering a donation.

Let me be clear, there are many ways to serve one another and by no means am I suggesting that offering financial support to the Cystic Fibrosis Foundation is what you must do. However if you are like me (remember, I’m an ass) or you are buried in the things that can easily consume a person’s time and talents then sometimes the best you can offer up is a financial donation.

All I ask is a small favor. Please consider a donation of any amount. Should you choose to contribute please visit Bryan’s mother’s fundraising page at the Cystic Fibrosis website. If you find yourself unable, please pass this post along to others that might be inclined and able to offer a donation and join Bryan’s family on May 7th for the Wichita Great Strides Walk.

It’s been many years of life since Bryan and I parted ways and yet Facebook has wonderfully  reminded me that he and his family are still admirable. If you were to read Jackie Florio’s posts and updates its clear he married someone equally admirable as he and let’s not even talk about Sophia. (I’ll let the pictures tell you all you need to know)

I have to say the Greek language has it right, Friendship is Love. So, to Bryan and by extension his entire family (those I know and those I have yet to meet): We may not be the best of buddies these days, but you will always be my Friend and you will always have my friendship.

~Luis

Pictures (Meet Sophia)

Bryan’s Mother’s Fundraising Page

Wichita Great Strides Walk Facebook Page

My wife has recently taken to rocking face 100% of the time compared to my measly 80%. She is nearing the end of the school year and looking forward to making a change into Kindergarten from 1st grade next year. I am super excited that this change does not mean that I have to move her to another classroom. Moving her classroom is harder that moving into a new house. I feel bad for all the other teachers at Clearwater. I think Cheryl lucked out and is one of few teachers in the entire school that doesn’t have to move classrooms.

Annaly is growing. She has a cough right now that sounds like a baby moose. Doctor says it’s fine but it freaks me out a little each time I hear it. However, the good news is that we now know that Cheryl’s gift for communicating with Elk when she has a runny nose appears to have manifested itself in Annaly in the form of coughing like a moose. Albeit a baby one. (Edited by Cheryl to add that if you don’t know the story about the Elk this makes very little sense. Sorry about that! )

Mike is talking and talking and talking. Good Lord that boy talks. He doesn’t even need to talk to someone. He is just fine calling his own play-by-plays like a toddler Bob Costas. He makes us laugh on a regular basis. For example: Mike is now making it through the day without a fully qualified diaper on. Meaning he is using the toilet on a consistent basis. However the boy is a bit of an entrepreneur when it comes to this.

Mommy has instituted a rather effective Jelly Bean for potty bartering system where in exchange for a successful potty visit Mike receives a yummy gourmet JellyBelly Jelly Bean of his choice. That is,  a jelly bean for number one and additional jelly bean for number two. Mike does not like to leave a trip to the potty without having at least both hands occupied with a fresh jelly bean. Meaning, if he goes to the bathroom for number one, he’ll wait for number two. That’s right, he’ll wait. He is so committed that he’ll wait for however long it takes. Needless to say 10 minutes is a long time for a toddler, let alone half-an-hour. So he takes to playing with his -unit previously referred to as- Mamba. Recently, he discovered that with enough poking Mamba wakes up and gets (let’s see… how does he put it?) long. The toddler scientific method is one to marvel at. The first time he noticed he was so amazed that he yelled. “Daddy! My Pee-Pee is loooonnnng” In an effort to control my laughter I said, “Amazing huh?”. He replied “Daddy, I want to show Mommy my Pee-Pee is long.” Mike was SURE Mommy was going to be just as amazed if not a little proud. Turns out he was right. That Mommy is one special person.

Here are a few more pictures to enjoy. I’ll try to pick it up in the updates.

Click on the picture to see the whole gallery

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A word of caution: Please refrain from writing the Olympic Committee with demands on behalf of Mike. Don’t get me wrong I am convinced that this was a gold medal caliber performance, but I think there is a competitive age limit.

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If you have any idea or knowledge of what may have occurred here please respond below in the comments section. We want to bring a renewed sense of peace to our home and any help is appreciated.

1. Save the positive talk for the web. When you are tired, it’s better to read well wishes then to have to stay awake to hear them. (i.e. leave comments below)
2. If possible, buy her food. I’m not pandering here, I’m just saying that’s a big help.
3. Call in the afternoon. Trust me.
4. Don’t ask for pictures. I’ve posted a bunch on this site for people that know us. Just email or Facebook for the password.
5. If you live nearby. Visit. Just call before you come.

I know it seems silly but little thing like these help keep thing in balance at home. Oh, and if you bring food feel free to include some extra for me.

Here are some pictures. Each picture represents a different gallery, so make sure to go through them all.

Setting up Annaly's Crib

Last Days in NICU

Home Sweet Home

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Here is my latest post on the High Touch Blog. This post is not AS exciting as the others in this series, but it’s one of my favorite subjects. It’s funny how even some of the most experienced IT/Web professional miss this and as a result end up causing all kinds of trouble on their network. Even if you are not the most tech savvy person on the planet I encourage you to take some time -if you have any- and read this over. It’s never to late to SPAMBUST!

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