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Lennon’s Story and why I raise awareness for organ donation

It’s April and that means it’s Organ Donation Awareness Month. One month to talk about donating organs, tissues or eyes to save lives.

I have always been an organ donor but not really considering the impact I could have in giving the life to someone else. One person has the potential to save 8 other lives and help an additional 50 people.

So who is Lennon and why does this all matter?

Lennon is my youngest son (now a whopping 13 years of age) but we didn’t always know he would get this far.

Lennon was born in 2003 and lived with an undiagnosed rare genetic disorder for 4 years. And one might wonder how this was undiagnosed for so long, and the simple and yet complex answer is that since it is rare, there is little data in what you would call mainstream medical information.
But once we had this diagnoses, some damage to his system had already been done. He was delayed in several areas of development (physically and mentally) but what was more important to us was to know how to help him, manage and care for him.

Here’s what Urea Cycle Disorder does in short:

Because the individual is missing the enzymes to remove ammonia from the blood stream and this will lead to hyper-ammonia episodes. You can read more about UCD’s right here: National Urea Cycle Foundation.

Within a year of learning to manage his genetic disorder through a strict diet of limited protein, added amino acid formula’s and swallowing 18 pills a day, we were unable to keep it under control.

His geneticist recommended a liver transplant, an alternative way to manage the urea cycle disorder.

In all the decisions I have had to make in my life, this was by far the most difficult and challenging and a lot of our questions couldn’t be answered. And we made the choice to move forward despite the risks. It is without a shadow of a doubt that without this, the urea cycle disorder would have eventually taken his life.

November 2008, at the age of 5, Lennon received 2 liver transplants 3 days apart. Crazy! And the months that followed were hard because his recovery was not just about the organ transplant, but about a collapsed lung, infections left and right, ascites in his abdomen.

A fight like no other!

He spent several weeks on the breathing tube fighting for his life – and we on several occasions we had the doctors tell us they were doing everything they could do, medically. The rest was up to him and the higher power!

Now I am not going to bore you with all the details, you can read about them in Lennon Steps. But I will add because life is crazy and a miracle all at the same time, he received a third liver transplant in 2011.

His recovery was nothing like the first. In fact, it was a breeze. We were home within 2 months and started living. Actually living.

  • He was started to eat and eventually we ditched the feeding tube.
  • He started to grow and we had to buy new clothes.
  • He started to learn and even retain information.
  • There were laughter and smiles all day long.
  • There were hugs and I love yous.

I don’t have to tell you how precious or amazing life is.

What I do want to tell you is that organ donation is a true gift and the only way for me to ever return this gift is by being an organ donor.
And encourage you to be one too.

You can make the pledge right here on this website: orgondonor.gov

In addition, I am donating 15% of my income in April to Children’s Organ Transplant Association.

So if you decided to join the Rebel Soul Connection, or purchase a membership from Create your Colorful Life or Handmade Life (Three Times Chaos) – any which way there will be a donation to support families in their own journey of organ donation.

What can you do?

Become an organ donor!

It’s an almost birthday and I have some huge realization

Tomorrow is my birthday, and I call it “The Answer to Life” because well I will be 42 and they say that is the answer ha!

I decided to declutter and clean out my office because I still haven’t fully organized since moving in and here I was, going through photo’s and took a quick trip down memory lane.

And I decided to let a lot of pictures and cards go. Some things I have been hanging onto for over 10 years.

Why?

  • For evidence of the happiness and sadness
  • For remaining attached to the pain
  • For always remembering where I once was

Letting go of the pictures doesn’t mean I am letting go of the memories. Instead, I am releasing the attachment and the feelings that truly aren’t serving me anymore.

The energy around those pictures was heavy and I don’t want to feel sad about my experiences, I want to feel grateful that I had them in the first place.

I didn’t get rid of all the pictures, just the ones that didn’t really serve a purpose, like the ones from my marriage, a previous engagement, and the sentimental cards from people who are no longer in my life now.

I did keep the pictures of my kids because those I find important and I traveled for the past 24 years to see how far my oldest has come, how cute my middle kiddo was (is) and of course the youngest.

And I realized in looking through those pictures that my boys really have a close relationship, they have each other’s back no matter what and that just makes me feel really good in my heart.

Did I teach them that? Maybe.

Either way, I am grateful for it because that means they will never really be alone.

But my biggest realization in all of it is that I am okay and I have always been okay. Nope things haven’t always been easy, in fact, I struggled hard sometimes but I absolutely love the woman I am today.. and that my friends is how I am going to celebrate my birthday.

core belief

Transforming your Core Belief

Learning and understanding what core beliefs are and how they impact your life because you can step into the awareness of when your drift into old habits. It’s like your ego remembers a contract you have signed a long time ago but that you have since forgotten about and ego makes sure you remember that contract.

Discovering hidden core beliefs is like going on a scavenger hunt and can be an uncomfortable process as you notice the destructive behaviors your core belief persuades you to participate in.

But amazingly, we do have the ability to not only become aware of our belief system, but we can change it.

Journaling

Daily journaling of 3 pages, 10 minutes or 30 minutes is a great place to start because you can go back and read them and notice a pattern of your thoughts and the belief you are holding onto. A belief of “I don’t matter” or “I am invisible” is something you have learned through experiences. Effective journaling will help you recognize that the core belief exists.

Thought Awareness

As you are writing in your journal or go about your day, take note of the things you are telling yourself. Paying attention to our inner dialogue helps us recognize when we are engaging our core belief.

A thought diary is a great way of exploring your thoughts and brings your core belief into the forefront so you can choose to change it.

  • A thought diary may include the event.

“My girlfriends went out for Karaoke but I wasn’t invited”

  • List all self-statements you are telling yourself about the situation and ask yourself what does it mean?
  • Beliefs – everything you believe about the situation
  • What does that mean?
    “My girlfriends don’t like me”
  • What does that mean?
    “There must be something wrong with me
  • What does that mean?
    “I am unlovable” this is the core belief
  • Write down words describing how you feel.

“Hurt”
“Mad”
“Sad”

This process helps you shift through the layers until your reach the bottom of the barrel. And you are ready to identify where it originated from, the impact it has and how it feels.

I have created a core belief exercise worksheet to help you not only identify the core belief but also transform it.

The key will be to acknowledge when it comes in, tell it to stop and state the new core belief. Eventually, the old core belief will no longer be in your existence.