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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!

Petra is a coach and mentor for creatives, rebels and dreamers who are ready to find the courage to forge their own path because life is too short to feed the fear.

She’s the founder of the Rebel Soul Connection, a community for creatives, rebels, and dreamers to take action with tools, resources, support, and accountability.

organ

My Son’s Organ Donation

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.

Petra is a coach and mentor for creatives, rebels and dreamers who are ready to find the courage to forge their own path because life is too short to feed the fear.

She’s the founder of the Rebel Soul Connection, a community for creatives, rebels, and dreamers to take action with tools, resources, support, and accountability.

April is Organ Donation Awareness Month

In the spirit of the Phoenix and the message of rising from the ashes, you may wonder what does that have to do with organ donation awareness. Because of organ donation my son Lennon gets to have this amazing life otherwise not possible.

Since my own childhood, I had to reinvent myself to get to be the person I always was but hiding and a big part of my message these days is to rise above. Because of organ donation my son Lennon gets to have this amazing life otherwise not possible.

My son Lennon, very similar represents the Phoenix and rising above all the challenges and difficulties along the way.

Lennon was diagnosed with a rare genetic disorder (Urea Cycle Disorder) at the age of 4. A year after the diagnoses, his disorder became unmanageable and the only way he would have any kind of life – and a quality one at that – was because of organ donation.

Lennon had 3 liver transplants (2 in 2008 and the third one in 2011) and the journey was by far not easy. Soon after his first 2 transplants, he became depressed and sullen, fighting the quiet fight. It is clear to me that he wanted to be here on this earth but it was all just so hard.

He had no control over the decisions that were made for the sake of his health and the benefit of being able to live.

He finally could shake the depression and unwell feeling he had lived with for so long when he received his last transplant and has been shining and rising to the occasion ever since.

He is now a witty, sarcastic and yet gentle and wise beyond his years individual because of organ donation.

Because of organ donation my son Lennon gets to have this amazing life otherwise not possible.

Forever will I be grateful for the families who have lost their loved ones and made the decision for the benefit of others. No greater gift can be given than love.

Petra is a coach and mentor for creatives, rebels and dreamers who are ready to find the courage to forge their own path because life is too short to feed the fear.

She’s the founder of the Rebel Soul Connection, a community for creatives, rebels, and dreamers to take action with tools, resources, support, and accountability.

Lennon Steps

Birthdays are more than just getting older

For the first time in 11 years, I will be spending it without my warrior … he’s not ill … he’s just spending it with his dad 🙂

It’s weird considering what he has been through and how much hype I have been given his past birthdays. It’s true that it happened because he defied the odds so many times and that deserves celebrating. The Libra within me always battles because I want to celebrate his sibling’s birthday just as much – they deserve it too! Though I have some amazing children who understand it intuitively and in their way, get it. My warrior’s birthday represents a survival of another year – another year that the liver continues to function (despite the fact he’s been experiencing mild rejection). Another year where we kicked the urea cycle disorders behind!

It used to be quite difficult for me to let go and while I will have a celebration when he returns from his little trip – it’s also about growing moments. Birthdays represent that we are growing not just in age but also in other areas of our lives.

I am grateful for each day I have on earth; my kids have on earth and that we all get to watch the warrior grow up. It used to be that birthdays were just birthdays … ya know about getting older; adding another digit and reviewing milestones of where each person is – what grade they are moving to and so forth.

The warriors birthed are so different though – sure I still celebrate that he is now a 5th grader (wowzer) – but it is so much bigger. I sometimes feel awkward calling him a miracle but the truth is that is exactly what he is – and an inspiration of sheer will-power, refusing to quit and give up.

That is what his birthday represents.

Furthermore, it also represents how fragile it all really is. The close calls we have lived with and survived – realizing that many in similar shoes with the urea cycle disorder and even liver transplants haven’t been so lucky. It’s a constant reminder that tomorrow is never guaranteed and that we always need or should be living in the now because that is what we have.

My hope is that others will recognize to quit stressing tomorrow and just be in the now.

Love it and live it!

P.S. I can’t wait for him to return and I can celebrate his birthday 😉

 

 

Petra is a coach and mentor for creatives, rebels and dreamers who are ready to find the courage to forge their own path because life is too short to feed the fear.

She’s the founder of the Rebel Soul Connection, a community for creatives, rebels, and dreamers to take action with tools, resources, support, and accountability.