Tuesday, October 30, 2012

Whenever I look into his big blue eyes, I feel lost. He is such a beautiful boy. Especially now, since the days of snuggles and helpless cries have gone. He is so independent. He has always spoken well. He enunciates. In his high pitch voice, he very seriously says, "Actually mommie..." and I cannot help but belly laugh. That of course frustrates him and causes him to be even more articulate. He's small for his age so his outspokenness catches strangers off guard. His 34-lb body barely stands over 3 feet tall, which often causes people to call into question his age. But he is in fact 4 years old, plus a month. Most individuals make it clear how blessed we are to have a healthy child.

We are blessed. He is an amazingly vibrant boy. He is smart... and that is what others say about him (You can only imagine how brilliant I think he is). He is kind. He is generous. He is caring. He exudes good qualities. He is amazing. He is vibrant. He is not healthy.

I rarely speak about that aspect of our lives. It hurts too badly. He has never known any differently and a complaint never leaves his mouth. Instead, he will occasionally tell me in private about the pain. After seeing a specialist for the first year of his life relating to his sleep disorder, we felt a well-deserved reprieve. Until he turned 2 years old and this began. He has an autoimmune disorder which has only ever been unofficially diagnosed. He has seen dozens of doctors (one visit, he saw 5 at one time!) in several hospitals and practices. This one says it is beyond her area of expertise, this one says, "I'm a dermatologist, I can only treat what I see", this one says that the method of diagnosis is too invasive. All the while, I treat him at home, calling specialists when things gets too complicated, and wishing that Mary Poppins will find her way to our home with "a spoonful of sugar" and some medicine.

Leaving yet another specialist's office this afternoon leaves me feeling depleted. My little boy hurts and, even though he never speaks of it, he shouldn't hurt. He should be carefree. Instead I tote him to doctors who pass on the responsibility to another practitioner, requesting that we check back in a few months.

Somehow this dead end leaves me with hope. Even though we have no new information, we've checked one more name off the list.