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!
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.