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

#Champions14


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.




Sunday, July 14, 2013

A new day


I have always said that one of the hardest things about raising a child with mito is that we don't really know what this disease will do. We don't know what next week holds, much less 20 years from now. That is a realization that has been difficult at times, but more often than not, it has given us the opportunity to be hopeful.

Neither us nor any of Nate's doctors (and believe me, there are plenty of them between the two teams here and in Houston) are able to have any preconceived notions about how Nathan's life will unfold. He could grow up to have a family of his own some day, a life apart from our immediate family, a successful career, children of his own...or he may not. Nate's head mito doc wanted to make sure that we understood the seriousness of his presentation of this relentless disease...and we do. But additionally, we also understand that we do not have any way of truly hypothesizing about how or when this disease will take over more parts of my little boy's body.
However, we know that the one who created our precious son's body does know what may lie ahead for him and us, and we put all trust in Him. We continue to pray for wisdom and guidance for us and each one one of his doctors in knowing what medical interventions we need to implement in Nate's life and how we need to proceed in different realms. And until drastic medical complications occur, we will continue to raise our son like our daughters...trying to prepare each of our children in tackling the future as adults and making their own decisions. We are trying desperately to prepare each one of them in this life by increasing their spiritual thinking, academic knowledge, and social interactions. The last two are why we are all so happy to still be able to trial school with Nate...he really needs to be around kids his own age, and he is so excited to be able to go to school and make friends on his own. I seriously can not wait for this milestone happen for my little boy!!

Since getting home, I have had a good bit of communication with our pulmonologist at Shands, who we love greatly. Over the past 4 years, we have realized that our two different teams of doctors have some strengths and weaknesses in their care for Nate...our team in Houston has seen Nate several times for 4 years now and have a great understanding of how mitochondrial disease affects him. But they are limited to the 30 minutes each one of them see him every 6-9 months. Our team at Shands may not know as much about this disease, but they know Nate very well...they know him when he is sick and well, struggling and energetic, in the hospital/clinic setting and in normal life. So one team specializes in the effects of this disease and how it affects Nate...and the other specializes in Nate. They seem to work well together, but it is sometimes hard to be the middle man between the two teams of doctors.
That being said, our home docs have been amazing in all of this!! Our pulmonologist is contacting the doctors in Houston this week to hopefully be able to get what they want in testing during the cardiopulmonary exercise test so that Nate can have this test run at Shands and save us from having to travel to Houston again in a couple of months. Additionally, she is trialing him on an increased oxygen level to see if it may make any difference in his respiratory symptoms since I have expressed concern that I am not quite sure that it is time to move to the non-invasive ventilation route quite yet. With this change, I am keeping a log of symptoms to be able to dictate accurate symptoms one way or the other to help us and others decide what interventions may need to happen. I am so very thankful for both of our teams of doctors in this situation.

All of that aside, when I think of our recent trip to Houston, I immediately try to push our difficult and negative conversations aside, as the incredible positive and fun aspects rush to my brain. Nate and I did so many "fun" things during this trip and experienced many new experiences. It truly was such an amazing time with my son that I wish so badly Jay and the girls could have accompanied!! Not only did we do our usual of playing with our mito friends from Houston and Dallas, but we used the free weekend to visit San Antonio, Texas caverns, dear friends from my childhood, and a church outside of Austin that I visited numerous times as a teenager and hold the members near and dear to my heart. I have to admit that it was so much fun introducing Nate to so many friends and family from my life before he came around. I have missed each one of these individuals so much since seeing them 15 years ago...and seeing them recently, it makes me miss them 10 times more each day! My goodness, my heart yearns to be with them all!!

So when I think of our recent trip to Texas, my mind and heart seems to be confused with emotions. On one hand, this was by far the hardest trip emotionally we have taken in 4 years...but at the same time, it was the most rewarding with friends and love from so many. And that dichotomy in and of itself makes me realize how much our God was at work in this trip...he flooded our emotions with overwhelming love, support, and friendship during a time we experienced some of the toughest emotions we have had so far...

We will remain faithful to our God. He knows what the future holds for us...and in the mean time, we will happily serve Him today...and tomorrow...and the next day.


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