Rowing marathon for Nemaline Myopathy awareness, that will happened 12/12/18. Here we talk about the event, a bit of fatherhood and more.
Well, as most of you know we moved from Florida to Colorado last month. We decided to move for many reasons that maybe I can talk in another post, but this one will be about the move. The decision was the easiest part.
Let’s be honest, move cross country is hard. Move cross country with a kid is harder. Move cross country with a special needs kid? and with a dog? Were we insane? Well, that was my first thought (at least for me the Dad).
Once everything was in the moving truck the real move started. We packed our car with Medical supplies. We needed to have supplies for at least 7 days (5 for traveling and 2 spare days just in case), needless to say the car was packed!
We took off Sunday night and drove to Houston, to Richard’s brothers house. Usually the drive would take 19 hours, and with the stops for Luke’s therapies (respiratory therapies), diaper change, stretch, coffee etc it took us 26 hours!
We rested about 24 hours in Houston and we took off to Colorado. We wanted to avoid night time driving, to avoid icy roads so we stopped again in Decatur, Texas. Texas is a big state, took forever to get out!
The next day, we packed everything again and took off. The goal was to hit Colorado, and we did. However, once we finally left Texas and got to New Mexico and started to go up, Luke started to need O2. We had all planed with the O2 concentrator but the outlet in the car is not strong enough to power the machine. We literally had to stop in the middle of nowhere to turn on the O2 tanks (our plan B). From that to the hotel in Trinidad Colorado was pure tension. We were so tense that we were thinking “should we go back” but we did not say out loud.
So, the next 45 min were intense because:
1- We were going up quick. If you ever drove in the area you know, if goes up quick from Raton New Mexico to Trinidad Colorado.
2- Luke was crying and needing O2 which he never needs, and he barely cry.
3- We did not know how long the tanks would last, we had only 2 small ones, and nothing set up in Colorado yet so no way to get medial supplies. We also did not know if the O2 machine was working or not.
That being said, we stop at the Hotel. I got out I tested the O2 machine and it was working, so we quickly got a room and took Luke inside. Luke slept all night with O2 and in the morning he started to need less and less O2. What a relief!
We took off and finally arrived in Broomfield Colorado, our new home. We arrived in Brromfiedl and we went to our last hotel, and the next day we had the key for the new apartment. The truck also arrived the day on time. If you ever move like this you might considered youpack.com great price and on time.
We must say, Colorado is incredible. Within a week everything was getting set up and quick. For example, it took 3 months to early steps come to our home in Florida and in Colorado within the first week Early steps come to the house to meet Luke and get the ball rolling. Also in our very first week in Colorado, Luke participated in the Go Baby Go program at the Arvada high school, where they adept an electrical car for special needs kids. An amazing beautiful program.
We are all adapting very well to Colorado, where they have amazing programs for special needs kids, an amazing children’s hospital, great people and we are truly grateful to be here. Looking forward to writing more about our Colorado adventures!
Go Luke Wygand Foundation
2 #triathletes and their 1st son with a rare muscle disease! Now Dad has another mission! Check it out! #triathlon #ironman #swim #bike #run #nemalinemyopathy #sup
A Dad on a Mission! http://ow.ly/i/BSWNf
Please watch, like and share! The go Luke Wygand Foundation video!
Today Luke turns 17 months old, and yes I have changed a lot in the past 17 months, and now I can actually open my heart and explain why, since this Journey is all starting to make sense now.
I have raced professional Ironman for 12 years, I was pushing my body to the limit day in and day out. I have a business helping people push their limits. Since 2012 I have been looking for a bigger purpose but I did not know what it was.
In October of 2015 and in the heart of Ironman training for both Carol and I, we found out that we were expecting our first child. From that time my whole life started to shift. November 2015 I went to Ironman Mexico, I lost my water bottle, I dehydrated and I stopped, and you know what, I was ok because my mind was getting into another place.
I decided at the last minute to race 140.6 hits Naples, I won, I was super happy and I dedicated that to Luke, since I had with me during the race a picture of one of his ultrasounds. Somehow I knew it that would be my last 140.6 distance. I was tired, and I still tried to come back and train hard… it didn’t happen.
July 2016 Luke was born, and that part you already know. What you don’t know, is that I did not workout for a while and to cope with all the news I ate, and I ate… and gain some weight and lot a big chunk of my fitness. Because the truth I was down for a while, because it did not matter if I had won a 140.6, a 70.3, or how fast my best Ironman was, I could not give my muscles to Luke to get better. In fact, the only thing I could do is to give him my love, and my support and that is what I did.
Life as a special need Dad is sinking in, and I would not have changed anything in this journey, you know why? Because I grew so much more, and learned so much about strength in the past 17 months that I did on 10+ years of racing professionally. I am not racing anymore, but all this made me a better coach, and made me improve and change my business to more online coaching. I have also improved my coaching by adding something that I was already doing but in a much deeper level: Life Coaching.
The changes don’t stop here, I also had 2 life dreams and now they are happening. First was to have a foundation, and I created the Go Luke Wygand foundation that have 2 missions, Nemaline Myopathy awareness and our brand new program for Dads (Jedi Dads). Second I wanted to write a book, and so far I wrote 2 books. In fact after I left the hospital and stopped eating so much (LOL) I found a new way to cope; Writing, and now I have 2 other books in the way. I also had a chance to become a Reiki Master, something that was in my mind since 2012… Also I have always been a spiritual person, but Luke’s arrival made me grow even more my spirituality, such as a deeper appreciation for life and the little things that we take for granted such as: Walking, talking, eating, breathing etc…
So yes, I have changed… but my essence is that same. My inner beast is still there, and that is why I am paddle boarding 200 miles for Nemaline Myopathy awareness. The essence is the same, is just my purpose and my mission changed. In fact I don’t even think it changed, I just optimized and found my soul purpose.
I have changed… Thank you Luke my biggest teacher in life!
200 miles paddle board
On February 2nd Rich will be starting a 200 mile stand up paddle, from Lake worth to Key west to raise awareness to Luke's condition, Nemaline Myopathy.