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.
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.
King of the Rock
I am way over due for a blog post and an update on Lennon and so with it being Organ Donation Awareness months, I am tackling both at the same time. Win!
Lennon is making physical progress and even some cognitive progress. He’s still academically behind with his peers and well can’t often handle the classroom of 20 kids due to sensory overwhelm BUT he is managing.
He’s had a physical recently and he has gained his weight back since the pneumonia incident but hasn’t grown much. Nothing too concerning as he will probably grow more in a few years just like his brothers – and well I am not exactly tall and he’s 4 ft 9 in right now.
One of the things I admire is his perseverance. He huddles and muddles through most any obstacle even if he becomes emotionally overwhelmed. One of the things I am in awe in is his strong affection for me though it really resembles the affection need for a much younger child. He loves to be held or picked up and at 63 lbs – boy that gets heavy. He loves his cuddle time and just needs to feel secure most days.
He’s coming up for review to determine if he still qualifies for the label of being disabled. It brings me all kinds of concerns for the services he is currently receiving that would stop just like that. In addition to his medical management that I cannot handle on my current income – life is challenging enough. I don’t know what will happen but we will cross that bridge when we get there.
He was quite done walking
In the mean time, we enjoyed a hike to a waterfall on Skyline Drive – his idea! He loved it until we had to go back, and while he whined he did successfully return to the car and was super excited about the ice cream on our way home. His legs are still not strong as most and I told him we will walk more frequently – he is not a fan. However knowing him, it’ll be fine because we’ll have loads of fun 😉