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.



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