It's that time of year again. Christmas is upon us, and it's time to reflect on the past twelve months. It's nice to think about our successes as well as our shortcomings and how we hope the new year will be better. It's a good time to consider what we have learned. Somehow, in the midst of the mundane yet crazy busy year, I have learned to truly believe in miracles. Maybe I always did, though. Maybe this blind faith was always lurking just beneath the surface, but needed something concrete and personal to bring it forth.
Let me explain. My youngest child is now age 3 1/2 and has demonstrated the ability to eat a normal meal only a handful of times. By "normal," I mean an age-appropriate portion or consistency, and I also mean that the meal would take place without gagging, choking, pain, tears or vomit. Actually, just getting him to the table at all is sometimes a feat. The main issue is gastroparesis, a condition that makes it hard for him to take a lot of food in at once, as the stomach doesn't pump efficiently. A recent trip to the nutritionist shed light on the fact that he is getting only half the amount of calories daily that a child his age and size should receive. This is not despite our best efforts, of course. He is still on formula, and it's done well keeping him alive, but he can't drink enough of it or add enough regular food to meet his appropriate caloric intake.
Despite this, he is not losing weight. He is, in fact, gaining. It's very slow, but it has happened. Because of this, he isn't a logical candidate for a feeding tube yet, even though the tube would ease our minds. In fact, his stomach moves so slowly, that if a tube were to be placed, it would go into his intestines instead of stomach, anyhow. That makes me really realize how tough this disease actually is. And yet... somehow... he thrives. Several doctors and therapists have mentioned that they can't explain scientifically how he could be doing as well as he is. In our numbers and facts-obsessed world, this just isn't ordinary.
During another recent appointment, I was told to consider that maybe Joshua simply doesn't even NEED those extra calories the way a typical child would. One theory is that he is often fatigued and therefore not overly active. Still, this thought is hard to feel at peace with. It's asking me to believe in unusual circumstances. It's asking me to trust in things I cannot see or have the knowledge to understand. It's asking me to believe in something that, in some of my darkest days, I have doubted, and that is a higher power.
But, this is what it has come down to. Until we reach a point where something tips the scales the wrong direction or some other decline happens, we have to just trust that all is well. Within that, believing in miracles has really become not an option, but a necessity. On a daily basis, I have learned to coast along on faith. The logical side of me still argues with this idea at times. It is very hard to put your child to bed at night knowing you weren't able to nourish him the way a chart would say you should, and yet trust that he is alright. There are still moments of doubt and tearful calls to the doctors. They question their judgement at times, too. It's a tough situation for all of us to navigate.
However, there always comes the blessing of a new day, with Joshua in his little footed sleeper, smiling and announcing he is ready to cuddle. I am always ready for the challenges we face, even when I feel slightly deflated. His smile and blue eyes inspire me. That, and the chance to look for more miracles. If I have one in my life, there must be more waiting. I look forward to another year of discovering them.
Merry Christmas and Happy 2012!