Tuesday, February 2, 2016

2016: Up To Speed

We have definitely started the stage of life where all of us being home together for an evening meal during the week is more of a rare occurrence. These busy years are exciting, fun, overwhelming at times, and go by way too fast. As exhausting as these days can be, they are incredibly rewarding, and the ability to be able to watch each one of our kids grow and develop different talents and skills is pretty special. I know that these days will be gone in the blink of an eye, so we are trying to soak it all in. 

Abby turned 12 in December! It truly is so hard to believe that she is almost a teenager, especially when it seems like just yesterday when Jay and I sat across from one another in the living room and watched her take her first wobbly steps on her own. Abby is growing into a gorgeous young woman both inside and out, and I am truly enjoying watching her in this stage of her life. She is a loyal friend, an ambitious and hard worker, and is incredibly passionate about playing the violin.
Emma turned 10 last month, and that is equally hard to believe. Double Digits! This girl continuously keeps us on our toes. Her wit and humor keep us laughing no matter what is happening. Her fashion sense is still, well, interesting. I absolutely love seeing her unique personality blossom. Em is still on the U10 traveling soccer team here and absolutely loves everything about this sport and the teammates she has grown so close to over the past couple of years. 
Nate will be 8 at the end of this month…his only birthday request is that he gets to visit with one of his best friends, Kira, while she is traveling close to us at that time. What 8 year old doesn't want to visit a former Miss America for their birthday?! It seems that 8 years old is a pivotal age in most kid's lives in relation to maturity and understanding of the world around them. Nate refuses to hold my hand in public anymore, but he’ll still snuggle with me at home if he’s really tired. I cherish those moments because I know its a matter of time before he stops that as well. 
Nate is also becoming very aware of what other boys his age are doing and wanting to emulate their actions and activities, which is great (within reason) and completely age-appropriate. But the only problem is that Nate isn’t a typical boy. Sports seem to be at the forefront of his friends’ thoughts and conversations: soccer, basketball, football, baseball, swim team: anything that has to do with participating in sports. While Nate is doing quite well in violin, talking about how he conquered this really hard section in Gavotte by Gossec doesn’t really get the same reaction as “I hit a homer” or “made 3 goals during my soccer game”. Nate really wants to play a sport. From the influence of 2 very special people in his life, he has decided that he wants to try to learn how to play golf. He has his own clubs now and is really looking forward to a few lessons soon. 
The little guy has had a really great few months from a medical standpoint. He seems to be in a good stable plateau right now, and I am just praying it continues. Its such a welcomed relief to have several months free of the intense worry over what is happening in his little body and trying to find ways to help him. He requires quite a lot of daily care, but it definitely helps when we see the difference the care makes in how well he feels each day. 
I started a part-time position within our Pediatric Pulmonary Center at Shands in August as a Family Partner Trainee. It has been such an incredible experience, and I am extremely excited about the possibilities ahead of me when this training program is done this spring. I also started doing tours of our Children’s Hospital part-time for Children’s Miracle Network Hospitals this month and am loving every single minute of that as well. My heart is in this hospital and its continued growth, and my passion is with CMN Hospitals and telling others how incredible this organization is, so I truly have the best of both worlds right now. The feeling I get when I walk into our hospital each day is truly one-of-a-kind! I feel so blessed and fortunate that I can potentially help make a difference in the lives of others there. 
One of my resolutions this year was to write more on this blog. Its incredibly therapeutic and helps keep our family and friends involved and up-to-date on what is happening within our family. But it is also incredibly time-consuming. That is the sole reason it has been so difficult to maintain lately.

Life is busy. But we are so very thankful for this crazy, busy, amazing life for our family! 

Tuesday, September 15, 2015

Some of the dearest friendships happen when you least expect it

I remember the first time we met her. There was nervous excitement as we started to walk towards her during breakfast at the JW Marriott in Washington DC during our CMN Hospitals Champions trip. I remember trying to keep my phone steady for a picture of her and Nate so I could share this amazing opportunity with our friends back home, but the picture ended up a bit blurry anyway. It didn't matter because OMG! It was a picture with Miss America!! What a once in a lifetime experience.
I remember during that same trip when Nate walked up to her seat on our bus to ask her to tell him something in Russian (she is trilingual, by the way!!), and she said "I like pizza" in Russian. And when Nate hugged her so hard after a long morning of TV interviews that he knocked her on the ground, I was mortified! Because she's MISS AMERICA! And my kid knocked her down! But then he grabbed her hand and helped her back up. Later on, when he realized we were having to say goodbye to our Champion families at the end of our trip, he specifically asked if he could say goodbye to Kira too. There was something there...a particular click of their personalities. From the very first few days, their relationship was just different. Special.
I did not forsee how much impact this dear woman would have on the rest of our lives or that we would feel the kind of deep love for her and her family that is only reserved for those that are most cherished in our lives.
I remember a nice December afternoon in a deli when Nate stole the pickle from Kira's plate and started eating it. Who in the world taught this kid manners? Kira didn't miss a beat and told Nate how much she loved pickles, so he walked to the deli counter and asked to buy her another one. And when Abby was discussing some hardships she was having with a couple of school friends, Kira looked in her eyes and said "Always be you, no matter what. And in the words of Taylor Swift 'Just Shake it Off!'"
I remember the first time Nate introduced her on stage as his "best friend". And I will always remember the expression on his face as he looked at her in the audience and her joyful laugh at different parts of his speech. These were the moments when I realized the true impact of their friendship.
I remember laughing and smiling from ear to ear after watching Kira and Nate on stage together at the Miss Florida pageant. As I sat behind them in the audience and watched their interaction and love, I thanked God repetitively for these relationships and experiences. I remember meeting her mom during that trip and loving her from the very instant we met.
I remember spending quite a bit of time together in the car to and from different events this summer and having conversations that made us laugh, made us think, made us love each other even more. Watching Nate and Kira enjoying down time with thumb-wars, dubsmashes, funny pictures together that he keeps safe on his iPad, and snuggle times. I remember watching his eyes light up when she came into view, his smile erupt every time she talked. I remember her knowing how to interpret his speech when no one else could, keeping him in-line when his 7 year old self got a little crazy, and convincing the picky kid to try artichoke pizza.
I will always remember every amazing moment of the 2016 Miss America pageant weekend. Their genuine interactions on stage during the Thursday night preliminary competition that made everyone's heart swell while they were given a glimpse into their close friendship. Kira and Nate hand in hand as they walked the Red Carpet together and were interviewed by numerous media outlets. The smiles, the laughs, the hugs, the moments that I still can not believe that happened. And everything in between. But the memory most precious to me is that of this beautiful, influential woman in an elegant evening gown sitting on the floor of the Miss America stage and comforting my little boy who always has a hard time saying "goodbye".
That is who Kira Kazantsev truly is. She is one of the most brilliant, poised, beautiful, and strongest people I know. But more than anything, she is one of the most loving and selfless individuals we have ever had to privilege to meet. Someone who worked so hard this year to bring attention to the way Children's Miracle Network Hospitals changes kids lives, who would play a game of chase with a kid in the hospital even when she was wearing heels, who would look into a child's eyes and make them feel like the most special person in the world. This is who she truly is.
At the end of a recent trip, Nate gave one more long, emotional hug to Kira, looked at me with tear-filled eyes and trembling lips and said "Mom, in Heaven, there will be no more sad farewells."

I don't remember the exact moment we fell in love with a woman we once just hoped for a blurry picture with. That feeling came quickly in the beginning and has grown into the greatest of loves, and we thank God for placing her in our lives. Kira is part of our family. Always and Forever. And we look forward to a lifetime of friendship.

 *Professional photos taken by the amazing Bruce Boyajian

Friday, August 14, 2015

I can't make this stuff up!

Our hearts are with our friend, Kira (Miss America 2015) right now, as its the last month of her reign as Miss America. On September 13, Kira will crown the next Miss America. We are both sad that her reign is coming to a close and also excited to see what new adventures await her in life. You wanna know something extremely cool? This little guy is going to walk with her on stage on the last night of preliminary competition at the Miss America Pageant in Atlantic City:
Obviously, we are beyond excited! Nate doesn't mind where we go as long as he gets to see Kira. I am just so blown away by the incredible once-in-a-lifetime experiences this little guy has had!

And to add to this incredible series of events, one of our dear friends is Miss Florida and will be competing for the title of Miss America! We have known Mary Katherine Fechtel (affectionately known as MK to us) through Dance Marathon at UF, where she has been a Family Relations Captain the past couple of years. She has become very dear to each one of us during this time, but probably none dearer than to Emma. MK has been such an amazing role model and friend to our children, and we have been so thankful for the role she has had in the lives of all of the kids involved in Dance Marathon at UF.

Until Sept 10, we can vote for America's Choice for the Miss America Competition. The state title holder with the most votes through social media will automatically make it to the Top 15 in the competition. All we have to do is vote via Facebook or Twitter with the phrase "Florida #MissAmericaVote".

And make sure you watch the Miss America Competition Sept 13 at 9:00pm EST on ABC!

Monday, August 3, 2015

Answered Prayers

Life is comprised of a series of relationships from the time you are born until your last days on this earth. How these relationships affect you and what you do with them will change you as you grow.

Through a series of speeches, presentations, and personal talks lately, I have willingly been encouraged to recollect and expound on the actions and emotions from the first few months of Nathan's life. Oftentimes portraying these emotions help those going through a new diagnosis or help others in the medical field giving new diagnoses to children and parents.
Those first few months of our son's life were excruciating. The fear. The unknown. The new "medical" language. The confusion. The guilt. The exhaustion. The turmoil. The sadness. It all seemed so insurmountable, and I know that it was only by God's mercy that we were able to see the light in the seemingly overwhelming darkness.

We knew early on that Nate had an illness that was serious and would more than likely be incurable. Each day as I would hold my sweet baby boy in my arms, I would look into his dark eyes and pray: "Lord, please give us wisdom and guidance to raise our son in a way that his life will touch everyone he meets. Let his light shine through this earth."

7 years later, the thought of this prayer brings so many tears. It is 7 years later that we see just how God has answered these prayers.

This boy with a joyous spirit, the tenderest of hearts, and a smile that lights up any room has literally traveled across our country this year truly touching the hearts of those he has met. In his short few years of life, he has accomplished more than most people have in a full lifetime. And every step of the way, he has created relationships that will last his entire life.

None of these relationships seem dearer than his friendship with Miss America 2015 Kira Kazantsev...or in Nate's affectionate calling: "Miss Kiwwa". From the moment Nate and Kira met this past November, their relationship formed and grew...and grew...and grew.
There was something truly special about the relationship these two quickly formed. Their personalities clicked, and they both seemed to understand one another. It wasn't about titles, honors, disabilities, or diseases...it was a love that was kindred. Insurmountable. Pure. It was a relationship that has affected not only Nate, but our entire family, as we see this incredibly influential and amazing young woman as part of our family and love her as one of our own.
So when I think back on the fearful, debilitating emotions during those first few months of Nathan's life, I am humbled and comforted in the prayers that have been answered in ways that we NEVER expected. Our son's life has been used to touch innumerable people throughout all the ends of this earth. My goodness, what a humbling thought. And likewise, his and our lives have been touched by so many that we hold quite dear to our hearts now. So many we will love deeply and dearly for the rest of our lives.
Life is comprised of a series of relationships from the time you are born until your last days on this earth. How these relationships affect you and what you do with them will change you as you grow.

Wednesday, November 19, 2014


I thought that I had "retired" from blogging a long time ago. Life is busy with 3 active kids, and there never seems to be enough time in the day to think, much less write. But with the once-in-a-lifetime week we experienced last week, I have felt the burning desire each day to just get my thoughts and emotions written out to process the enormity of it all.

Nathan was chosen to be the 2014 Children's Miracle Network Hospitals Champion for the state of Florida. It was an incredible honor to merely be nominated by our local Children's Hospital, and it was quite humbling knowing that in this role, he would serve as the ambassador for all pediatric patients who visit the numerous CMN Hospitals in our state. I have to admit, we had a lot of fun traveling around Florida this year attending fundraisers, telling Nate's story, and showing our gratitude to the many organizations who support the cause that is so dear to our hearts! 
The year long ambassadorship culminated in a trip to Washington DC and Orlando that was unlike anything we have ever experienced. Not truly knowing what to expect during this trip, the two phrases we kept hearing was "this will be the trip of a lifetime" and "this trip will be life-changing". Those phrases are often used for drama and flair and have seemed to loose clout over time. So understand my earnest explanation that in reference to the #Champions14 trip we took, those phrases are entirely true and are almost an understatement. 

We are not the same people we were before going on the Champions trip. It literally changed our life in many ways. 

Due to the astounding sponsorship of Delta Airlines, Marriott International, and Chico's FAS, a Children's Miracle Network Champion from every state, Washington DC, and Puerto Rico were given a week of lifetime experiences, celebrity greetings, and a whole lot of fun. These little warriors, accompanied through the week by their National Goodwill Ambassador, Miss America 2015 Kira Kazantsev, stayed in the beautiful JW Marriott in the heart of Washington, DC, met First Lady Michelle Obama and pet the first dogs, had lunch in the Dirksen Senate Hearing Room and explored the Capitol Building and other National Monuments. One night, they were treated to a preview showing of "How to Train Your Dragon" before it was released to DVD, complete with stuffed "Toothless Dragons" and DVDs for each child and a complete movie theater experience! These Champions paid their respects at Arlington National Cemetery by laying a wreath at the Tomb of the Unknown Soldier in a solemn and extremely touching service, and they later boarded a beautifully decorated Delta Charter flight with the absolute friendliest pilots and flight attendants as we all flew together in high spirits to Orlando, FL for the second half of the trip. 
After experiencing an emotional water salute from the Orlando fire department upon our plane's arrival,  the Champions were welcomed to the Disney Coronado Springs Resort with thunderous cheers and applause from hundreds of supporters awaiting their arrival. It was all any of us could do to keep from breaking down emotionally at the warm welcome! (Which, if we are being honest here, I completely soaked the shoulders of one of our Florida CMN Hospitals Associates with tears directly after this moment.) The next day was chocked full of so many highs...the medal ceremony with Nick Cannon, Miss America, and Delta Executives that honored each one of our Champions for their courage in tackling their medical challenges, meeting several celebrities, the mothers and grandmothers being honored with a jaw-dropping shopping spree and afternoon of pampering by Chicos, White House Black Market, and Soma Intimates, an afternoon where we were able to personally thank the amazing people behind each of our supporters for CMN Hospitals, ending with a Disney Character dinner and a personal concert by Lady Antebellum where the Champions were invited to join them on stage for a couple of songs. 
If that wasn't enough, the trip concluded with a magical day at Disney's Magic Kingdom, where the Champions participated in a dance party, were the Grand Marshals of the Disney Main Street Parade and finished out the night enjoying the ever popular Very Merry Christmas Party. 

So, when you read the above paragraphs, you can totally understand why I say that it was a once-in-a-lifetime trip. But what makes it a "life changing" trip? 

Well, that would be the people who accompanied us on every step of every day. These families from each state...I simply can't write about our moments and memories with them without tearing up. These children are the definition of "Champion" in every sense. Each and every one of them. They have defied odds, proven medical odds wrong, and fought through treatments, trials, heartache, pain and pure exhaustion with every fiber of their being. They have each done so with grace, resilience, and an incredible positive attitude that inspires every person who is privileged to cross their path. And what do they want to do in their free time? Help other kids in need by bringing the much needed awareness and funds to our Children's Miracle Network Hospitals. All of this is what makes each one of them the epitome of a Champion. 

And the families behind these Champions...I looked into the eyes of these families and instantly saw a reflection of our own journey. Each of us have been on a similar, yet different, path. I saw their worry, their fear, their hearts that have been broken and mended a hundred times. I saw their joy, their wonder, their delight in seeing how much their Champion has accomplished. Without words, their eyes told stories of the nights they lay wide awake worried about the future, the times they crouched in a shower to sob because no one could hear them there, the internal pain they felt when their child was looked at differently or the tinge of jealousy that erupted from watching the complete normalcy of friend's lives.

But in the midst of the struggled that lay deep in the eyes of our new friends, we saw the pain overshadowed by the intense joy they felt each time they were able to hug their child. We saw elation in watching them experience so many amazing opportunities in the span of a week. We saw the overwhelming love and emotion well up in each parent as they sat back and watched 54 children who have met various challenges throughout their lives all meet, connect, and instantly become best friends...for life...for ever. All because of Children's Miracle Network Hospitals. 
When we didn't feel like our hearts could take anymore, we started to get to know the others who were with our families every single step of the way on this trip: The CMN Hospitals Staff, the photographers, the videographers, and Miss America...people who have devoted their lives to helping others. Each of these individuals were born with a servant's heart, and we fell in love with them all quickly and deeply. 
So when I say that we are not the same as we were before this trip, it is because of each of these Champions, families and individuals. All together, we created ONE family...the #Champions14 family. Being home to reality this week has been much harder than I ever imagined. I feel like pieces of our heart reside in every single state in our country now. But in the end, I am grateful that we know precious people all across our nation who desire to further the momentum of Children's Miracle Network Hospitals. 

We are #Champions14 forever.

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