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.
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.
That’s how long it’s been since Lennon’s first liver transplant.
When we made the decision to move forward with the transplant, there is no way we could have known of all that occurred after. All we had, was hope.
Hope that the transplant would indeed ease Lennon’s life. That it would bring us some kind of normalcy that didn’t involve going to the hospital 2-3 days a week.
During the month and years that followed, hope is all we had to hang onto. Hope that it for Lennon’s future become more about the quality of life rather than quantity.
Life is different now, improved and riddled with less anxiety.
How far is he’s come because of this gift and the lessons we all learned along the journey, I honor them. With each struggle, infection, and liver that Lennon was blessed with, we learned more about him, the way he shines his light into this world, teaching us what is open to the gift of life really means.
I say it time and again, Lennon doesn’t know what it means to be pissed off or hold it against people. And it’s beautiful. He gets mad like we all do at times but he doesn’t stay there. Instead, he bounces around the house singing or talking, usually having a conversation with himself or his game and periodically giving me a hug-attack.
There is no stress about how he is going to do something because he doesn’t believe that he can’t. Sure he does things differently, but don’t we all?
I say this every single year, but I am forever grateful for the families who have made the decision for organ donation during their time of grief. I don’t know who they are, but I love them dearly and like every year, I will light a candle tonight (and on the 21st for liver #2). Each family deserves to be remembered for the gift they have brought to this world.
And I encourage you to be an organ donor because you are helping change someone’s life for the better, and isn’t that the best thing to do?
I think it is.
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.