Saturday, November 17, 2012

(Can't) Let Him Eat Cake

This evening we celebrated the baptism of our youngest nephew, Teddy, and decamped to our parents' house for a party afterwards.

The ceremony, complete with a priest who insightfully represented baptism as "immersion in a relationship" for life, was a wonderful family-and-friends affair.  It wasn't lost on most of us that it was pretty amazing that the baptism happened at all.  My sister and brother-in-law and their three boys drove down from Oregon, and only made it to Medford before it was clear something was wrong with (middle) Cousin Charlie's catheter.

I wrote before about my nephew and his feeding tube.  I haven't written since to explain that he is now on a more serious regimen of Total Parenteral Nutrition (TPN), a central line which carries much greater risk for infection and whose management involves lengthy daily rituals and regular nurse visits.

Charlie receives ALL his nutrition--food and drink--through his line.  He does not eat or drink. He cannot digest food as we do, though he lives in a world of rituals around food and has taste buds that work just fine.

When something is wrong with Charlie's line, something is potentially wrong with his mortality, so work, school, even baptisms, might be interrupted in favor of ensuring that Charlie is okay.  The family van pulled over to a hospital en route to San Diego to repair the line, and tomorrow Charlie will have a blood transfusion to treat some anemia.  But in the meantime, Charlie's little brother Teddy became "the newest Christian in the whole wide world."

We celebrated Teddy's baptism with salmon, meatballs, cheese and crackers, potatoes, and cake.

As my daughters admired the beautiful fondant cake and we cut it and distributed slices to the crowd, I didn't anticipate how much almost-three-years-old Charlie, too, would want his own piece.  That might seem like a "no duh," but I was struck by not only how hard my sister and brother-in-law work to maintain his line and sterile conditions, but how they struggle to preserve his health by managing his desire to eat like everybody else.  It's not unemotional, and it's a daily heartache.

For a moment there I felt like clearing the world of cakes for Charlie's sake.  But my sister reminded me that he wants meatballs, too.

During this week of gratitude I'm thankful for some things too easy to take for granted:  tasting, chewing, swallowing, and the fact that my daughters can eat whatever they want without incident.  But I'm feeling particularly grateful for the special, strong, and sweet boy that is my nephew Charlie, and that my sister and his husband are his parents:  an incredible match.

1 comment:

Marisa Reichardt said...

I am in awe of your nephew, your sister, your brother-in-law... your family. This post was so well said. Beautiful and heartfelt. Thank you.