Earlier today, I was many thousands of feet above the ocean below me, a couple of hours away from arriving in what I can only imagine will feel like paradise—a week on the island of Oahu with my wife and four kiddos. This week will be filled with hula lessons, a luau, and some quality time with dolphins, and whatever adventure comes our way, all part of Isadora’s greatest Wish to go to Hawaii, granted by the incredible organization Make-A-Wish (and to answer the question that some of you maybe be asking, “Did I miss Lūck’s Wish???” No, you didn’t. His will come, most likely, in the summer, in the form of a most classic Wish, Disney World, so stay tuned for that!)
The timing of this trip couldn’t be more perfect, as we are in the midst of a very stressful and emotional time as a family, in addition to the fact that Giacomo (AKA G’Bot) is coming off of a fantastic post-op visit for his G-Tube placement, with great healing, no infection, and a whopping FIVE pounds gained in the 5 weeks since his surgery, with full doctor’s approval to swim with any dolphin that might come his way!! Oh, and it’s January in Minnesota.
Being on a plane with no other distractions and the inability to check my email due to a lack of Wifi, I decided to start re-reading a book given to me a few years ago, by a dear friend, Lindsay, Baron Baptiste’s “Perfectly Imperfect.” The book is all about the true integration of one’s yoga practice and application in daily living, and really is great even if you’ve never taken off your shoes and stepped onto a yoga mat.
Two chapters in, and I’m already finding that immense joy in reading a book for the second time—the discovery of new insight and inspiration, as I’m deep into the “The Dance of Yes and No,” where Baron talks about the importance of saying “Yes” to things in order to gain growth in one’s life, and how saying a clear “Yes” to something is also saying a clear “No” to other things in that same moment, in the case of growth, saying “Yes” to that, and truly growing as a person in life means that you are saying “No” to procrastination and stagnation in life.
Now, I definitely don’t find myself to be a stagnant individual, as I am constantly changing in my life, whether I want to or not, but I do know that sometimes procrastination is an issue, especially when it comes to getting this whole My-Vida thing going. I know that if I am truly going to say “Yes” to making My-Vida grow and become more than just a set of great ideas, I am going to have to say “No” to some things, starting with my procrastination and excuses/reasons as to why I haven’t done it yet. This will come with building a supportive team and network around me, which I am in the process of doing, as I have been blessed with some great people landing into my life this past month or so, who are dedicated to not only building My-Vida, but also supporting my existing business, Enlightened Mama, so that I can focus more time on My-Vida. Speaking of time, regardless of what I say “Yes” or “No” to, there will always remain a finite number of hours in the day. If I am to dedicate more time to My-Vida, that will have to come from better time management, something that has always been an issue for me, but as they say, admitting you have a problem is the first step, right?
As I kept reading Chapter 2, my eyes landed on a paragraph that I feel like I somehow completely missed my first go-around, because I’m pretty sure I would have remembered it.
He writes:
“I’ve met many people who have faced serious health challenges and crises. Most went through an initial process of being angry, resentful, or even in downright denial about their illness—all perfectly understandable reactions. But the ones who I am always most amazed by are the ones who get to the idea that resisting what is so is actually causing them greater emotional suffering than the illness itself. Accepting what was going on allowed them to flow with the new demands of their bodies in a much more empowered way.”
Wow. This is our journey with myotonic dystrophy to a tee. I look at these four kids that I have, who are more resilient, more loving, more kind, more genuine humans than anyone I know. Sure, some of this might come from some of their neurocognitive deficit, which can, at times, impact their emotional maturity, giving them the sweet, honest mindset of a child younger than themselves, as I have always told them what they lack in their brains they more than make up for with their huge hearts. However, in reading this, I feel like a lot of why they are they way they are, despite having this disease is because of their complete acceptance of having it. They say, “YES!! I have a myotonic dystrophy! YES!! This is a degenerative disease with no cure that will impact and shorten my life. YES!! I have things that are hard and that I can’t do, but there are lots of things I CAN.” Since we first got their diagnosis over 8 years ago, I have always spoken openly and honestly with them about their disease, of course taking their age into account and what they are able to handle and understand about their disease, which is a lot. They get it. They said “Yes” and they are incredibly emotionally and psychologically healthy because of it.
And I have said “YES!! My kids have this crazy genetic disease and all of our lives are greatly impacted by it. YES!! Some days are hard, but never once have I wished it to be any other way. YES!! I am blessed to have four humans that have been given to me to give me perspective, humility, and the greatest appreciation for every second of life, which most people never achieve throughout their whole existence.” It is this attitude that has changed this whole experience for me, and really changed my whole life. I know because I see other people living life with not only myotonic dystrophy, but all kinds of illness and disease, as either a caregiver or the person with the condition, and I see how saying “No” to their condition impacts their lives and the lives of those around them. I see how this denial negatively impacts physical, emotional, psychological and spiritual health of all parties involved.
Saying “Yes!” allows me to move forward every day. Saying “Yes!” to their disease, to those that offer support around it, including amazing organizations like Make-A-Wish, is what got us out of bed at 3:30 this morning to board a flight to Hawaii, where we will say “Yes!” to a week of huge smiles on a little girl’s face, “Yes!” to making memories as a family, and “Yes! to embracing each other, and this journey we are all on together, because saying “No” just really isn’t an option.
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