There are always lessons to be learned in life if you are open to recognizing them and most importantly if you are willing to listen.
My son Lennon has been changing people’s lives, inspiring them and motivating them into being more present, to not take anything for granted and also showing the shadow side of life is too short to be miserable.
When I tell people that, Lennon is my greatest teacher on how to do life, I am not joking.
The kid knows what he wants and he’s quite verbal about it too.
And what you may not know, if you’ve never heard about Lennon, read the blog posts or the book is that he survived his first 4 years of life, living with a potentially fatal rare genetic disorder. And since it was undiagnosed for some time, his brain took a little bit of a hit in the cognitive area – but don’t let that fool you.
He is often one of the smartest people in the circle. His wisdom is often leaving me speechless.
The other day he said:
You have to be ready at some point, so why not be ready now?
Sure, you could delay being ready but aren’t you just putting off the inevitable?
The moment you decide to go after what you want – your dreams, goals and a life that feels good – is the moment you are ready. You can, of course, keep talking yourself out of it but why? What’s the point?
- Start that business
- Write that Book
- Get healthy
Be ready now and stop waiting for one day.
It isn’t always about the things he said, although they are brilliant and yes I realize I may be a little bias, but the thought has crossed my mind that people needed to spend time with him and hear his story. He’d never go for it and I got to respect that. That, of course, doesn’t mean I won’t share life lessons along the way.
Like anytime I hear someone complain about how shitty life is or how miserable they are.
Because of the genetic disorder becoming unmanagable after his diagnosis, it was recommended that he has a liver transplant because while there is no cure, this can change his life for the better. And so that’s what we did but we couldn’t fathom the fact that he’d have 3 liver transplants between the ages 5-8 and that things were really tricky for a while. (You can read about his journey in Lennon Steps).
But here’s the thing, no matter how dicey things were, how painful everything was (physically or emotionally), he got up and did what he needed to do. That doesn’t mean he didn’t complain but it seemed he just knew what he needed to do in order to get home from the hospital or get back to school.
Or like now where he’s saving up for an XBOX One and he’s diligent about the chores that help him earn money.
And some days are hit or miss, but he’s never quit if it’s something he wants.
I think that’s an important lesson.
Don’t quit the life you want to have.
It takes dedication, commitment, and a willingness to go against the status quo. Even if it means people don’t like you or you don’t fit in.
Lennon isn’t worried about fitting in.
Lennon is worried about what video game he’s going to play.
So, don’t worry about fitting in, instead figure out what you are going to do next that you want to do and of course could have an impact on your life.
Worry (not really) about the important stuff. Get excited (Yes this) about it!
Choose to wake up with joy in your heart!
There aren’t many days I recall Lennon ever to be angry or grumpy (unless the pain was too much). That doesn’t mean he doesn’t get upset, it just doesn’t stick around long enough. I think he doesn’t know how to hold a grudge of any kind because he just is filled with joy and it shows.
There’s something very genuine about it and it always reminds me that you get to choose how you feel, how you engage, express yourself.
Choose to be angry, you’ll feel miserable and wonder when life will change.
Choose to feel and be joy, life looks different filled with gratitude and like an adventure.
What will you choose?
Lennon’s story is really kind of crazy and maybe even in parts unbelievable except that it is as real as you and me.
You see when he was born, life was complete. I had 3 amazing boys and I was good with this decisions. Little did I know that having my tubes tied perhaps was my saving grace with the years that followed.
Here was this cute little boy (yes I am biased) but life wasn’t cute at all. I knew deep down that something was not right but for the life of me, I couldn’t put my finger on it.
All I knew is that I was losing my mind with days of screaming and unable to bring satisfaction to my little guy.
And little did I know that he would bring a tremendous amount of change to our family. There is no doubt that parts of me are filled with guilt because it caused me to neglect my other children throughout, but I am also so incredibly grateful for having such amazing boys.
There is a level of understanding that sacrifices needed to be made in order to save their brother.
When my prayers were finally were answered and we finally had a diagnosis, Lennon was 4 years old. And he (we) are so lucky that he is still here with us today.
Urea Cycle Disorder is no joke, it’s deadly. It has taken many lives before Lennon and continues to take lives to this day.
And as we ventured onto our journey of living in medical chaos and survival, I started writing. And as we were sitting in Pittsburgh Hospital in January of 2011 and the doctors gave him his third liver, I decided it was time to write a book.
His story needed to be shared because it brings to the forefront what mindset, faith, and hope really mean in this world.
And I know full well that it all could have gone so differently.
And I know full well that it still could but I keep the faith and the trust that all will work out with the best intentions.
And I live life with gratitude because if it has taught me one lesson, it is that life is too short and the time is now to take action on your dreams.
You can get the paperback or Kindle version here!
You are never quite prepared for the unthinkable.
You get pregnant, like the few times before, and you don’t thnk about the possibility that something isn’t quite right. Your other children are healthy, developing normally and causing you to throw your hands in the air with frustration.
This was me back in 2002 when I found out I was pregnant with what would be my last child.
When my son received his diagnosis of urea cycle disorder at the age of 4, I couldn’t have imagined the years that followed. It’s like that bad dream you wish you’d never have. But it wasn’t a dream, living in medical crisis 24-hours a day. Always being on alert of another hyper-ammonia episode, always trying to ensure that anything that could stress him, is really prevented.
But we couldn’t remove or control the genetic disorder, no matter how hard we tried. Time moved on and we found ourselves traveling 45 minutes to the hospital first once a month, then once a week and then 2-3 times a week.
Always measuring his meds, his protein and wondering how we could improve the situation and avoid another hospitalization.
But no matter what we did, we couldn’t get it under control.
8 years ago we were faced with a really hard decision of moving forward with organ donation. In order for my son to survive, he needed a liver. And we made the only decision we could do, that felt right and go through with the plan of my son getting a new liver.
A new liver meant a chance at a life.
It’s been 5.5 years since his last (third) liver transplant.
And until this year, I was able to avoid having these conversations with him. Avoid them because I wasn’t sure what to say. How to explain that I watched him not breathe when he came off the ventilator. How to explain that he lost so much blood during his last transplant that his blood pressure dropped to the point of almost no return.
But I believe in truth and I believe he deserves to know everything that he can’t remember due to his medical induced coma and age.
He’s coming to the age of development where he wants to know things, all the things, including his own journey.
You know these conversations are coming, but you are never truly prepared. Like the moment you tell him he almost didn’t make it and you watch him take it all in.
“Hmm, scary”, he responded.
And with tears in my eyes, all I can think “Yes, kiddo. It sure as hell was.”
But it won’t stop here. He will continue to process the information, continue to ask questions until he can formulate a clear picture in his own head.
And I want him to know the reality of how lucky he is – we are – that he get’s to be here with us today.
We reached another milestone in life where this amazing warrior is 12!
It’s simply amazing how he has fought to be here and continues to inspire the people he meets. His energy and spirit are infectious to be around and if you are ever down, man all I need to think about is where he’s been or he comes in and ignites life into the moment.
His spirit and essence are just that, life.
Reminding us to go after our dreams – to enjoy the moment. Holding grudges and hanging on to negativity will only keep us sad and unhappy. And while all moments are not rosy – I relish the fact that he’s here!
Below are 12 pictures to commemorate parts of his journey.