Zander Smith
This is a mini-Bio about Zander that was written on April 18, 2021
At that time we saw a bright future for Zander. He had already shown us how hard he worked to meet every challenge.
Born: June 13, 2003 died December 28, 2024,
forever 20 years old
Zander was born prematurely and spent his first couple of months of life in NICU with his mom and dad at his side. His six year old big sister visited via glances through ICU windows and sometimes colored pictures for his incubator to brighten his days. We knew Zander would be facing life with a cleft lip but it turned out to be more severe, a wide, bilateral (both sides),
cleft lip, and palate.
We never viewed the cleft lip and palate as anything but a challenge, one that we would solved in the years ahead.
That challenge continues after seven surgeries, and now that he has finished growing, there will be a few more to go. Zander also faced other surgeries.
He had hypospadias and testicular torsion. All nine surgeries went well and Zander, bravely and with dignity and taught his family how he was able to make these events less stressful just by smiling, before and again after each surgery.
Zander faced school with challenges too. Sometimes young children can be unkind and laugh at someone with a birth defect. Though Zander was trying hard to be like other children, his badly formed mouth, missing teeth, and open palate wouldn't work for him.
Some teachers were wonderful and tried to help him through this but unfortunately, there were some that actually punished him for not wanting to speak. This turned into what is called "selective mutism" , a scar that he carries now. But he worked and he worked and made it through middle school.
Zander had learning difficulties too. He works extra hard to make it in school but we were, and still are, confident his life will be a happy and productive one.
Zander, in his early teens also developed a unexplained hand tremor. It makes it difficult for him to hold an eating utensil or bring a glass to his mouth without spilling or dropping things. Yet, he did his best and through the years he enjoyed activities like swimming, dance classes and even appeared on stage, became a Boy Scout and moved up the ranks. He took up horse back riding and astonished people with his love for that sport. He also became an advanced martial arts student, and just before his spinal fusion surgery he became an advanced student in Taekwondo.
Eating was difficult for Zander. He had to use his limited teeth to tear food from the side. He had difficulty chewing things into small pieces and sometimes gulped his drinks because he couldn't close his lips (his upper lip is only a scar). Yet he flourished. He grew from lower than low on the growth charts to blowing through his endocrinologist's target height a few years ahead of time. Brovo for him! He made his family proud again.
This was written after Zander’s botched surgery that left him on a G-tube for feeding and suffering for 3 years until thst surgery led to his death on a ventilator a few days after Chirstmas (his favorite holiday).
Posted on his Obituary (click)