Every year there’s picture day but isn’t the kind, your kids do in school. It’s the kind of picture day that has me a little nervous even when everything on the outside looks amazing.
Experiences shape you and we’ve experienced first-hand that the outside doesn’t always look like the inside.
It can be challenging to not give into fear and relive the experiences that were painful and had me and everyone else wondering if everything is ever going to be okay.
And yes everything is okay these days.
Ultrasound always means looking to see what’s going on with his liver and then determine what needs to happen, pending the results.
For us, that means either go on as normal or go in for a liver biopsy to explore some more.
And since everything looks good, we will just go on about our lives as normal as one would living life after a liver transplant.
Every year and every day, I am being reminded of how far he’s come and to think of someone I couldn’t even imagine him going to high-school. And yet here we are, preparing ourselves for him to transition to high-school.
I won’t lie, I look forward to being an empty nester and yet I am feeling a little bit of a twinge as the youngest is transitioning into a new phase of his life.
Life after a transplant is nothing I imagined when we made the decision for him to receive a new liver. But it’s also not as complicated as one would think. Sure the beginning was a little rough (ok maybe that’s an understatement) but as it stands now, he’s just like any other teenager, doing teenage things.
And so for now, we just get to live this normal life until the next ultrasound and the same fear comes up.
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 diagnosis, 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 bloodstream 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 you’s.
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!
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!
Lennon Steps are similar to baby steps, except that these are infused with spunk and spirit in Lennon who sneezed himself into the world.
In my new book, Lennon Steps, I share the journey of my son Lennon, diagnosed with a rare genetic disorder and what would be years of not knowing what life will be like after liver organ transplantation.
The book recounts the first four years of the mystery that remained until a few months after relocation Lennon was taken to the hospital. The emergency crisis final diagnoses crated spiraled into many life and death situations until deciding that organ transplant would be the only viable way of survival.
The recovery took an unexpected turn and Lennon would encounter many more life and death situations.
Can you believe it?
It’s been an incredible year of successes and a few heartaches.
Lennon is officially a 5th grader – Woohoo!!!
We are treating the mild rejecting – a minor setback but he continues to look and do amazingly well!
His muscle closure what the right thing to do – and he is loving it with all the things he can do 😉
Here’s to another year of showing how its all done – with courage, will-power and an inspiration to all!
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 😉