“Why did God make me this way?”
It’s often said that we are not given more than we can handle, or that God gives special needs to special people. I’m going to call this one out and say that is CRAP!
It’s my son’s birthday this weekend and he will turn eight. This year has not been easy for him. Joel was born without an ear and is missing some of the bone structure within his face. He also is hearing and vision impaired. He looks different from other children and unfortunately society is not always so accepting of looking different or acting differently. I think a lot about this burden of facial disfigurement; the surgeries, the stares, and comments. I think about him daily looking in the mirror and thinking, maybe if I grow my hair a little longer, or wear a hat, or maybe just not go outside. I see him creeping closer to my side when we leave our small community, because outside our town, people tend to stare. I notice his hesitations in new places with new people. His moves are calculated and I note that he likes to have his “bad” side pointed towards me. I imagine that he feels it’s less noticeable and there is security in that. These subtle changes I am witnessing tell me he is slowly creeping towards feeling ashamed of his appearance and differences, and I am a bit lost. There are no prosaic statements or platitudes that fix facial disfigurement. No magical words that can be the balm for his self-doubt and fear.
This last Halloween, he talked in detail about the costume he wanted to wear. He wanted to be Darth Vader and wear a cool mask. It was an expensive costume, but I purchased it without hesitation. It was not lost on my husband and I that Joel could walk around “normal” for one day of the year. He could go out in public and there wouldn’t be sideways glances or small children pointing fingers. No mothers shushing their small children and whisking them away before they asked where his ear went. And I wouldn’t be straining to hear their answers. I wouldn’t be hoping they would have a perfect answer of why God made him without an ear. I know it’s not because he is a special person that can handle more than others. Because honestly, who wants to hear and believe that. I keep searching and listening because I want to know the answer to this very question. I have laid in his bed and stroked his jet black hair. I’ve marveled at the fine details of his lips and long eyelashes that any woman would kill for. I have touched and know the structure of his face and wondered how to ease his fears. I have listened without words or answers as he has asked me, “Why didn’t God give me an ear?” And my answer will never be, because you are able to handle it. Because I know there will be moments he can’t handle it. There will be times he is angry and not feeling so special. There will days he stands in front of a mirror and sees himself as ugly and unlovable. And I’m not going to tell my son that God created him this way because he is somehow superior in his coping abilities. No, I am not…. I have learned that sometimes there are no answers, there is only listening. I am learning that some answers while well intended, can hurt more than help. Joel needs me to show him that his disfigurement is only one small element of who he is.
Most importantly, Joel needs to know he is not an accident or any less than he should be. We all have our blemishes, imperfections, and problems. A deformity of the heart is far more crippling and broken than anything physical. As we celebrate my son’s birthday, I will look upon him and see beauty because I will see him for what he has, not for what is missing. I will see a child whose parts inside and out have been mended together to create a beautiful 8 year old boy.
Psalm 139:14 I will praise you, for I am fearfully and wonderfully made; your works are wonderful, I know that full well.