November 18th, 2020 is the day that it’s been 12 years and counting since his original liver transplant and that changed so many things. There isn’t a day that doesn’t go by where I am not in awe of medical technology and advances that have been achieved that allow me to share this life with an extraordinary human being.
I had a friend ask me a question if Lennon had a specific type of procedure related to his liver transplants and after a bit of back and forth – she reminded me that she liked it when I am in my feels about his journey.
And yes, I know I am his mother and perhaps a little bias – but ask the people around him and I feel like they are going to agree. His spunk and zest for life, I am not sure I’ve seen in anywhere else before and he’s been teaching me all about it since the day he was born.
If you’re not familiar with his story, he’s a quick timeline:
- August 2007 – Diagnosed with Urea Cycle Disorder – CPS 1 at age 4
- August 2007 thru October 2008 – 35+ hospitalizations due to hyper-ammonia
- November 18th, 2008 – First liver Transplant
- November 21, 2008 – Second Liver Transplant
- November 2008 thru January 2009 – Live in Limbo
- January 2009 thru February 2010 – surviving, kinda
- February 2010 – Hyper-ammonia episode
- July 2010 – Recommended for third transplant
- January 20, 2011 – third liver transplant and the epitome of health since then
And sometimes I get twisted and wonder what day needs the most remembering and then I find myself saying all of them – because through all of them a family I don’t know has made a decision in their time of grief to give life – to donate organs of a loved one so that others may have a chance of living.
And here is my boy honoring this every single day through by rolling with the punches so to speak. The dates above only show the physical health challenges over the years but there are also cognitive delays, sleeping disorder, and autism with anxiety + ADHD components. And yet, he continues on not allowing this to get in his way of living.
They don’t show the wounds I still feel having come so close to losing him multiple times and that letting go just seems just a little bit harder this time. And yet, here he is reminding me to not focus so much on “what could have been” but on all that is.
His report card just arrived and he’s rocking virtual school and even though he misses being in school physically on some level, he’s thriving. We started ABA therapy a few months ago because it was time for some extra support on mastering life skills because even though thriving and has this zest for life – he also has resistance to anything that has a social component outside of his home.
But perhaps my favorite thing is that he can come to me with anything – that he trusts me enough to share things that do not come easy to other people. When expressing some of his emotions its done in 3rd person or in meme form and if you’ve not experiences this before … I don’t know … it’s amazing.
- He reminds me that you can like what you like and who cares what other people think.
- Kindness is important and we should all be nice to each other.
- And meme’s are the greatest thing since the invention of the internet.
But 12 years and counting I will take the challenges every single day – it reminds me how hard he fought to be be here and how determined he is to live this life and honor those that gave him a chance to do so.