The Feeding Tube

Today the GI doctor told me that it was time; we'd done our very best to keep Bobby off the   g-tube and it was today we accept his troubles aren't going to change overnight. (For anyone new to the blog, our son Robert has been trucking through some tough birth defects.) I was divided into thirds;  trying not to cry in the office and feeling like the failure everyone says not to; overwhelmed with relief that we won't have to be scared of every bite and swallow that goes into his mouth and lastly frustrated that we hadn't decided to do this surgery sooner.  It will provide us the time we need to find out where his nerve damage is coming from and how we can target the muscles to fix the situation and keep his lungs healthy all in the meantime.  He will hopefully still be able to eat solid foods by mouth as long as we get positive swallow study results, it's just the liquids that are destroying him through aspiration and aversion right now.  I'm at peace.  Pretty much.  I think I'll be more at peace when I am able to make-over some of his Ugly Dolls like the rock-star duo above.  I call it praying with my hands. It's kind of a mom thing, I think.  Expect a lot of new art as well. Art is therapy and it's never been so centering.   xoxo Agnes