In an earlier post I told you an inspirational muse can be found almost anywhere. Today I want to tell you about one of my muses–the bravest little boy I know.
Xander (pronounced Zander) is my first cousin twice removed. In other words his maternal grandfather is my first cousin. In the south we have to keep up with stuff like this. It keeps us from intermarrying.
Almost five years ago Xander’s great-grandmother (my aunt) called out of the blue one night and told me Natalie (Xander’s mom) was pregnant and the baby had a severe case of Spina Bifida. My aunt said Natalie and her husband, David, were in Nashville to try to get into a specialized study at Vanderbilt and, since they didn’t know anyone in Nashville, asked if I could check on them. I said, “Sure…but who are Natalie and David?” I didn’t have a clue.
I made one of those awkward phone calls to Natalie at their hotel. “You don’t know me but…” Long story short, my husband and I took them to dinner the next night, the evening before they were accepted into the Vanderbilt study which required them to relocate from Florida to Nashville until after the baby was born.
Two days after I met his parents, Xander had his first surgery to repair his spine. He was only only 23 weeks old and it was done in utero. He was only the 87th person to take part in this experimental prenatal procedure. He was born six weeks later and weighed a slight 2 lbs 13 ozs. The Cesarean was an emergency and Xander’s grandparents couldn’t get to the hospital for his birth (they were enroute, of course) so my husband and I stepped in as honorary grandparents. We were later promoted to Grammy and Pappy–his godparents. As we stood in the neo-natal intensive care unit and watched him for the very first time, Xander took off his oxygen mask and showed us what a fighter he was going to be. To this day he hates oxygen masks.
Xander is now four. He’s had twenty-one surgeries since that initial one, more than half of them life-threatening. He has a team of doctors that could fill a conference room. He has severe neurological and urological damage that will unfortunately plague him for the rest of his life. It’s heartbreaking when a four-year-old knows the difference between an X-Ray, a Cat Scan, an MRI and a urodynamics test and, when he’s in a hospital, can tell you which way to go for surgery. On the other hand, it’s amusing to watch him instruct the nurses on how to take his temperature, insert a catheter or start his “RV” (IV). He’s endured more pain and hospitalizations than most of us will have in a lifetime. I could tell you a lot more but I think you get the picture.
Xander and his family now live across the country, near an excellent children’s hospital. My sister lives near them and we try to visit as often as possible. I recently saw him at a family reunion. He does pool therapy so he had a lot of new things to show me. He’s learning to walk with “sticks” and has long been doing wheelies with his custom wheelchair. From the reunion he was headed to Disney World. His parents make sure he has plenty of fun to balance the trying times.
It’s said a picture is worth a thousand words so here are a few pictures of Xander–my Xtraordinary, Xceptional, Xhilarating Muse. I bet he’ll inspire you too.