While many are focused on the inauguration today, here in our home we are celebrating 10 years of liverversary.
It’s been 10 years of good health and no setbacks. Sure there’s been a cold here and there but nothing that impacted his liver health in any way. There have been surgeries to add in mesh to hold his abdomen together, biopsies, and wisdom teeth removal.
I remember the years before his first transplant – the unknown followed by the Urea Cycle Disorder Diagnosis. And then following the months after his first two transplants that had his life on the wire and then the terminal diagnosis of chronic liver disease in 2010. And to see him today, just 5 months shy of turning 18 I am in awe.
Not just in awe of him and who he is – unfiltered, spunky and witty neurodiverse human. Although his life isn’t without challenges due to the impact of the urea cycle disorder on his brain, and the challenges that come with being autistic – there isn’t anything we would change.
There are moments I wonder if he’d be here today had we not chosen to move ahead with the liver transplant. There are moments I wonder how long his liver will allow him to stay on this earthly plane. But those moments are brief, because if I have learned anything in being his mother – you seize every moment. You choose to be present in the now.
But there is another side to us celebrating 10 years of his life and him still being here.
Families are mourning the loss of their loved ones – and even though we don’t know who they are – we honor them, send them love and gratitude for choosing the gift of organ donation. And I will light a candle and be still for just a moment.