“…our family is a stronger unit due to the life and challenges we affectionately call Princess Leilani.”
My name is Gerri and I am the proud mother of two: Leilani Agape’, my almost 12 year old Full Trisomy 18 daughter and Zackary Jamar, my almost 10 year old son who has no formal diagnosis, but is much more work than my special needs kid!
Despite the diagnosis of Trisomy 18, Leilani has enjoyed a relatively “healthy” and “high quality” life. She’s only on a couple of maintenance drugs for seizures and asthma, which is commensurate with a significant number of typically developing children. She’s traveled the world, goes to school every day, torments her brother when possible, and is the apple of her dad’s eye….a pretty standard description of life for a 12 year old. She’s had a number of surgeries to include placing the trach tube and G-tube, Nissen (fundoplication), cholecystectomy (gall bladder removal), Hirschsprung’s repair (partial colon removal), reconstructive rectal surgery, inner-ocular lens placement, adenoidectomy (adenoids removed), and VSD/PDA/double right ventrical repair (heart surgery). I know that’s a mouthful, so consider my perspective when I say Leilani has led a relatively healthy life. Despite all of those shenanigans, we still count it all joy. Having the privilege to rear a Trisomy child is indeed a blessing and has changed my life.
For anyone who knows me, you know that I have a lot of disparate skills, sort of a “Jill of all trades”. It wasn’t until Leilani came into my life that those skills began to work together for a common cause. I am a better person and our family is a stronger unit due to the life and challenges we affectionately call Princess Leilani.
Stay tuned for more postings of “The Life and Times of a Princess”. See you soon!