My Life with Zane

In addition to this blog, I write another one about my younger son, called My Life with Zane. Five days after birth, Zane was diagnosed with Trisomy 18, a devastating chromosomal disorder with a high mortality rate. Most of us have two of the 18th chromosome. Zane has three. The stats go something like this: 50% die in utero. Of those born alive, 50% or so die within a few months. Less than 10% make it to their first birthday. Zane is now four.

The condition has some 130 associated anomalies with it, some of which are evident with Zane. Our little guy has been through quite a lot in his four years: surgery, near-death experiences, central apnea, and countless doctors’ appointments and therapies. He does not yet speak or walk. But he demonstrates a lot of love and happiness.

I started out maintaining a CaringBridge site for him, then eventually graduated to a blog. It is mainly there to keep friends and family apprised of his goings on. But it also serves to connect with others touched by Trisomy 18 and other disorders. I often find it is a good place to vent about the challenges of raising a child with global delays. Though any ranting is rarely about him. Because, I must say, Zane himself is quite a sweetheart. But more on him during the Z post.