Today when we were at the lab the phlebotomist asked why they were doing this one specific test on a baby when children don't develop these sort of deficiencies. I explained it was because he has down syndrome. She stopped marking the lab orders and stared at me. Then she turned her eyes down and said, "I'm sorry."
I put on my smile and asked her to please not apologize. I explained 1- It was okay 2- she didn't know 3- we aren't sorry Addison has DS 4- his diagnosis has been a blessing to many.
This lady has drawn Addison's blood at least two times before. In fact, she has been able to get sticks when no one else could. I know from talking with her previously she is a Bible believing Christian. Yet, she could not understand that Addison's affliction was not something we are sorry for.
She responded to me with another, "I'm sorry. I shouldn't have asked." I knew she would not understand what I was saying so instead of trying to explain our feelings a second time I tried to put her at ease. She glanced at the new patient who walked in the door before answering under her breath with one last aplogoy, "He doesn't look like it."
I didn't know what to say at that point. She's right. Addison doesn't have what is considered the classic telltale features that makes his diagnosis obvious. Even specialists in the care of people with down syndrome have pointed this out.
And yet... I always wonder what such statements are supposed to mean? Does it matter what Addison looks like? Is his lot in life supposed to be easier if people can not see he has down syndrome? For that matter... what are people apologizing for? Are they sorry Addison was born? Are they sorry he won't be just like other children? Are they sorry he won't likely be the smartest kid around? Are they sorry he has to get another needle stuck in his arm?
For the record, I happen to think Addison is one of the most beautiful children in the world. His blue eyes never cease to amaze me. I love his hands and feet. And his smile, which after nearly a year we are just starting to see regularly again, makes me want to weep, it is such a thing of beauty, joy and peace. Although, I am sometimes heartbroken for the suffering he must endure, I am not sorry for Addison's diagnosis or the trials that come with it. But none of those things matter, not the way Addison looks... not my opinions... not anyone's apologies. And the why of it can all be explained by these verses from my Bible study today.
It is good for me that I have been afflicted;... Thy hands have made me and fashioned me: give me undesrtanding, that I may learn thy commandments. They that fear thee will be gald when they see me because I have hoped in thy word. I know, O LORD, that thy judgments are right, and that thou in faithfulness hast afflicted me. Let, I pray thee, thy merciful kindness be for my comfort, according to the word unto thy servant. Let thy tender mercies come unto me, that I may live:... Let the proud be ashamed; for they dealt perversely with me without a cause; ... Let those that fear thee turn unto me, and those that know thy testimonies. Let my heart be sound in thy statutes; that I be not ashamed. Psalm 119:71-80