New Post on Paddling for Strength, a 200 mile Journey for #nemalinemyopathy
New Post on Paddling for Strength, a 200 mile Journey for #nemalinemyopathy
New Post on Paddling for Strength, a 200 mile Journey for #nemalinemyopathy
Hurricane Irma just pass by Florida, and this time I had a feeling we needed to Escape. For some reason my intuition said “Let’s go out of Florida”, different than Mathew last year. This was a huge storm, and we wanted to stay together as a family.
Wednesday AM we made the decision to leave, but it was one problem: We have never traveled more than 3 hours with Luke, neither we have had Luke and Bolt in the car at the same time, and that was a huge concern, however we were determinate.
Once we made the decision we posted on the Nemaline Myopathy group where would be a good place to go, so we could be near a good hospital just in case. That is when our luck turned on. A family offer their house in Alabama (including Bolt). We took off at 6 pm and arrived at 9 am in Alabama. We drove non stop thru the night, and our warrior Luke was so brave, he did not even complain.
I usually say there is a positive side in everything in life, we just have to look for it. The trip thought us how to change a trach baby diaper and do cough assist in a moving car. That is right, we did Luke’s care while we kept moving forward.
Once we arrive in Alabama, not only we felt safe and with electricity but we had a pleasure to stay in a house with another Nemaline Myopathy family. Ally and Luke have nemaline myopathy, but the mutation is different however the stories and the struggles are the same. Being able to share this for a week has been a blessing in the sky. We have no words on how grateful we are to this family that open the door to us, but also to be able to share our experiences. The incredible part is that Luke and Ally seems to know each other in a different level. It almost feel like their souls know each other. It was Love at first site! Not only the family received us so well but the the neighbors were super nice bringing us food and checking on us.
The circumstance was not the great because we were escaping from crazy Irma, but the experience end up being the best. Sharing experiences with another Nemaline Myopathy family was absolutely amazing!
My efforts for Nemaline Myopathy are just starting. In life I always said we copy the good things, with that in mind I created the 1 min push up challenge. Yes, similar with the ice bucket challenge. When I asked what the nemaline myopathy foundation need the most the answer was: Awareness and funds. So my thought was I can help, I can do something crazy (actually I said something stupid since I was stupid enough to do 18 ironmans LOL just joking) like paddle boarding 200 miles from Key West to Lake Worth (we are changing directions so I can finish with Luke), but I wanted to do something NOW since the paddle board will be in 2018!
So here it is the 1 min push up challenge:
Why push ups? Because nemaline myopathy affects the muscles causing weakness.
What is the challenge?
The Wygand Family!!!
People ask me why after 18 ironmans, I could just simply stop doing triathlons? Well I will try to explain.
First of all, I started to do triathlons for one reason, I wanted to be healthy, enjoy life, train and workout outdoors and I did achieve that, but I also wanted to help people change their lives specially mind and body. I did achieve that by becoming a coach.
The fact is that I was doing all that, I went from 260 pounds to 6% body fat, I did some major changes in my life, but I never felt fulfilled. Truth is I was still searching and it was hard to put all together. A few moments during those years I wanted to stop, but my EGO did not let me. I was achieving a lot but as a coach and not as much as an athlete (talking about fulfillment here).
A few years of pushing my body to the limit, day after day, race after race my health started to decline, I started to have thyroid issues, hormonal imbalance etc. I started to debate is that was healthy for me. With this debate in mind I started to learn that a few athletes, that started with me or even after me got caught with doping (I can name 3 on the top of my head besides the countless age groupers). That news was a cold shower. I remember also in one race a saw one of my favorite athletes drafting (which is illegal in an ironman), and that was another cold shower.
Those incidents happened back in 2012, and I kept pushing it thru. In fact I started to win more local races after that, but my debate was just starting. I kept on going and thinking that I could not give up, and my ego was always saying that I needed to do training harder and faster to prove something. I did not know what I needed to prove of for whom but I needed to prove something.
This battle between ego, health and my true self kept on going. I wanted to win a full distance triathlon no matter what. In 2015 I was on the breaking the course record in Naples Hits Triathlon series full distance when my tire exploded and I lost 45 min waiting for a new tire. I did not give up and I did the best I could, and end up in 2nd place. After all that, I took a small break, I was not motivated and the debate was growing and growing. I decided to give me (or my ego) another chance. I went to Cozumel and that did not go well, I lost my water dehydrated big time and decided not to finish. My wife was pregnant and my mind was in another planet. Still with all that I gave another shot. I sign up for hits Naples. I remember that day, I saw a shooting start and I asked to please guide me.
I went to Naples and I won the race, I had finally finished first in a full distance triathlon race. That was a special day; it was my wedding anniversary, and also in 2016 was the year my son was born. Once I cross the finish line, my first thought was: And now what?
2 weeks after the race, I tried to go back training but it was not happening, I was physically and mentally tried. I started seeking myself again. I kept it easy just biking but my neck started to hurt, which I never had an injury before. I had 3 herniated discs, so for me that was a sign that my cycle is coming to an end, and I decided to listen. I started to focus even more on my coaching skills, which is comes naturally for me…
When Luke was born, we had a surprise; he unexpectedly came with a genetic disease called nemaline myopathy. Luke brought me so much light, despite with most people would think, the challenges we went thru in his first year were a huge blessing. You know it sound ironic 2 triathletes have a kid with a disease that cause muscle weakness, and my whole life was based on mind and body. Neither I or Carol is carriers of the gene, how could that be? Why me? Why us?
Reality is, why not me? Why not us? So in the middle of those challenge moments I decided to meditate again, but more religiously, like every day. I have meditated so many times in hard moments in life to get answers or simply look how I could deal with something. I moved from why me, to why not me, and decided to start learning what Luke wanted teach me.
I started to look to the signs and coincidences, a special one and freaky one was the incubator that Luke was in the hospital (the very first incubator) was clean on my birthday. It had a sticker, at that moment I realized, there is a huge lesson involved here and I must learn. That was the beginning of reconnecting with me again, with my true self, with my soul. The lessons were countless and the spiritual growth was huge, to a point that I decided to write a book about it.
I did a big dive, and in pretty much 1 and a half year I saw my life rewinding in front on me (but the battle was going on for awhile), I gain a bit of weight, I started some courses, I did things that I really like it when I was a kid to help me reconnect and I started to challenge some of my beliefs. That is how I came up with the C.O.R.E method.
You might ask me, where am I now? Well using the C.O.R.E method (I always test my theories with myself first), I realized that my dream was to inspire people but not on the performing as professional athlete, but by being true to myself. The truth is, I have never felt at home in the professional triathlon “world”, I never felt I belonged there, I could not agree with the drugs and cheating on race such as drafting, and let’s be honest, that happens all the time. The only part of the triathlon world that I really fit in is coaching, I just freaking love it but I wanted to coach more than just triathlon. So I decided to add to the coaching side (my gift), the soul part of it. I wanted to inspire people to find balance on their mind, body and soul.
Life will never be perfect, but we can find the good on everything in life, in every situation, no exception and this is the closest thing to perfection. When you find the balance between mind, body and soul you can take on any challenge that life throws at you and learn from it. Life is just like an Ironman race, it’s never perfect, you will have up and downs, but in the end is all about crossing the finish line feeling good knowing that you overcame the challenges with mastery. That is why I love the sport.
Now my efforts are all on helping others create their Feel Good Way of Life (mind, body and soul) and helping Luke overcome his challenges. I will be paddling 200 miles in 2018, from Lake Worth Florida to Key West in order to create awareness to Luke’s condition Nemaline Myopathy
Another Ironman one day? Maybe if Luke ask me to do one…Until then I will create awareness for his cause, paddle board, and coach!
Well a year has pass, and Luke now is 1 year old (wow) that went pretty fast!!!! I cannot even begin to explain to you how amazing this journey is. Yes is was hard at first but the growth that came with it is much bigger than any challenge, in fact I believe that in order to grow we need to be uncomfortable, and this Journey made us quite a bit uncomfortable, but we accepted the challenge and we are growing with it!
Luke has brought so much light, and inspiration not only for us but to the people around us and the world. Hard to explain how people that barely know us offer to help, and ask about Luke daily. In fact, when Luke was in the hospital, many people for different religions were praying for Luke and in one point we had a church in Brazil with 2000 people praying for him in one day.
This is truly amazing and the support that we receive daily is unbelievable, and we are truly grateful for all of you that have helped us.
Someone told me once, “when you have a child you will triple your income”, that is part true, is not money related, it’s your natural gifts, by that means it will come the best of you, whatever the situation may be. I can only say in my case, Luke’s arrival took my life and I believe my family’s life to another level. I can honestly say I triple my income of gratitude, joy, and love, and that is all it matters!
For example: One of the biggest gift was the book that Grandmother Lilia Monteiro wrote during our stay in the NICU and the first time we went home. The book is called Diaries of a Baby and it express in a extremely positive way the love surrounding Luke. We recently translated the book to English, which it will be released in within a week. Before the launch in Brazil 500 copies were sold, and the book had a record sale on launch day at the book store in Brazil the past July 6 (Luke’s birthday). On my side, I got so inspired that my dream of writing a book is being fulfilled, I can’t even believe that it almost ready, I am still debating on the title.
My efforts to create awareness for Nemaline Myopathy are growing with me. I always wanted to do something like that, however I never had a foundation that I could trust neither a case that I really was into. I thought about doing another Ironman but to be honest after 18 of those, I know I can finish one any time, plus I believe Luke and all other kids deserve to do something more unique. Paddle boarding requires strength and a lot of core, therefore fits perfectly for the cause. That being said I add a little bit of endurance and madness to the game. Paddling from Lake Worth to Key West (or vice versa depending on weather), 200 miles. The building strength foundation is supporting me and 100% of the money raised will go to research and I will be able to help. Training has began already, so stay tuned.
You can check the event here:https://buildingstrength.networkforgood.com/projects/32128-paddling-for-strength
You can also get the book on the pre sale price here: https://rwcoaching.net/Store/dairies-of-a-baby
Decidimos fazer um documentário sobre nossa jornada e o amor e apoio da comunidade, então decidimos tentar kickstrter e fomos aceitos. Muitas pessoas estão nos perguntando como o kickstarter funciona, então aqui está. A principal coisa para kickstarter é que deve ser algo que inspirador.
Kickstarter é tudo ou nada, logo ou nós levantamos todos os fundos que nós precisamos ou nós não ganhamos nada. O fundo cobrirá, despesas tais como: aluguel de câmeras, transporte, cineasta, produtor, cartões de memória, tempo, tradutor para legendas e tudo o que venha surgir. Temos até 20 de maio para aumentar o financiamento. Seu cartão de crédito será cobrado somente se levantarmos tudo no final.
As metas são:
-90 min documentário bilíngüe
– um pouco da vida familiar Wygand (Luke, Carol, Rich e Bolt)
-Como Luke tocou muitos corações e já e uniu tantas pessoas juntas
– conversa e entrevista com outras famílias
– o amor e o apoio de outras pessoas
– como superamos desafios baseados no amor puro, e muito mais … nós temos um muito conteúdo já.
As idéias estão se tornando realidade e com sua ajuda podemos fazer mais e melhor para ajudar e inspirar famílias em todo o mundo. Você pode acompanhar nossas atualizações em kickstarter, youtube, instangram e facebook.
Com muito amor!
We decided to do a documentary about our journey and the love and support of the community so we decided to try kickstrter and we got accepted. A lot of people are asking us how kickstarter works, so here it is. The main thing for kickstarter is that it must be something that it is inspirational.
Kickstarter is all or nothing, by that means either we raise all the funds we need or we don’t get anything. The money will cover, expenses such as: camera rentals, transportation, filmmaker, producer, memory cards, time, translator for subtitles, and everything it might come up. We have until may 20th to raise the funding. Your credit card will be charge only if we raise everything in the end.
The goals are:
-90 min bilingual documentary
-a little bit of the Wygand family life (Luke, Carol, Rich and Bolt)
-How Luke touched some many hearts already and put so many people together
-talk and interview with other families
-the love and support from other people
-how we overcome challenges based on pure love, and a lot more… we do have a lot of content already
Love to all!