The elephant in the room

Life goes on despite chronic illness.  The normal stuff of life marches forever onward.  Mike started MaRC Technologies.  It got off to slow start, but we knew in time it would grow and prosper.  It was almost like having another child.  It required a lot of heart, time, and patience.

Michael and Ryan had spent the last couple of weeks with my sister again.  They had visited us at the hospital a few times, and always wanted to know when we were all going to go home.  As usual, I didn't have an answer to satisfy them.

Christopher had spent the last couple of weeks healing from surgery and fighting off a vicious infection.  His tube feedings were back to their normal rate, so we were being released to go home.  Fortunately, I still had that car to go home in and that house to go home to. 

Since I hadn't been home in awhile, I was pretty sure that the refrigerator was empty.  I decided to stop by the grocery store on my way home to stock up on some essentials.  Christopher was sleeping in his infant car seat.  He had the NG tube still in his nose, and it was taped to the side of his face.  It was draining continuously into a bag as he snoozed. 

I put his seat into the shopping cart, made my way down the aisles of the store, and started putting food into the cart.  To everyone else in the store I looked just like an ordinary mom shopping with her ordinary baby.  As often happens when you have a small baby in your cart , other shoppers will lean in to get a closer look.  It was at that point that they would suddenly become aware of the fact that this was not your ordinary baby.  I'd like to believe that their stunned looks were because Christopher was such a stunning looking baby.  Sadly, their shock had more to do with the fact that he had a tube stuck down his nose.

Whether people will admit it or not, when you see someone who looks different, or who is in a wheelchair, or who has an obvious physical deformity everybody looks.  It's natural.  It's also true that everybody looks if you see someone who is really tall, or really super skinny, or really stunningly beautiful.  It's average people that nobody notices.  Anybody outside the realm of normal or average gets attention, so a baby with a tube down his nose???  Believe me, that's not normal or average.  It definitely is going to get attention, and not because people are being cruel.  It's because it's just not something you see everyday.  It's a clear sign that something is abnormal, something is wrong.  People are curious.

It's kind of hard to miss this!

The fact that people noticed Christopher's tube didn't bother me in the least.  If I had seen a baby with a tube down its nose, I'd look too.  I was amused though at the way people reacted when they saw it.  Most people (I would say 9.9 out of 10...not sure if that's even possible, but it's pretty much everybody) would see it, their face would flash "shock", and then they would immediately act as if they hadn't seen anything at all.  Some would try to make small talk...ya know questions like...how old is he?  What's his name?  Did you have an easy labor?  They would just "talk right past" the fact that he had this enormous tube stuck down his nose.  It just became the elephant in the room that everybody looked around and talked around, but no one acknowledged that it was there.  Most of the time I played along and answered their questions, but if I was in a quirky mood I'd point out the tube myself...Did ya notice that tube going down his nose?  Then their faces flashed "I'm caught."  I'd reassure them that "I'd look too."  I'd explain what that awful looking tube was for, and that it is perfectly okay to ask about it.  Then "I'm caught" would change to "I'm relieved." 

Every great once in awhile, a brave soul would take one look at Christopher and get right to the point.  What is that tube for?  Is he sick?  Is he going to be okay?  First I would THANK them for asking, and then I would answer their questions.  There was no harm, no foul, and no offense taken.  I appreciated their concern.

It was then that I decided that I was going to have to explain this part of human nature to Christopher.  As he got older, I knew he would become aware of the fact that people were noticing his feeding tubes.  I wanted him to know that they weren't staring to be mean.  They were looking because he has something that is very unique and special about him.  I didn't want him to grow up feeling ashamed or embarrassed about his feeding tubes.  I wanted him to understand that God gave him a very special way to eat and to live.  He shouldn't be surprised if people look because of course they're going to look.  If people ask questions about it, just explain it to them.  If they say anything mean or make fun of you, ignore them.  It is their problem NOT yours!  Move on!  Don't let it get you down!

Total cuteness!

As we did our grocery shopping that day, the "elephant in the room game" continued to play out before our eyes.  I just chuckled inside myself.  I knew the truth.  God had provided a way for Christopher to eat.  Sure, it wasn't in the normal way, but it provided him with the nutrition he needed to live.  I asked myself...after all, when it comes right down to it, isn't that what's important?


 If you have never accepted Jesus Christ as your Lord and Savior, you can pray like this:

More tomorrow...