Josiah sat next to me brushing his teeth. While I brushed my hair looking in his large bathroom mirror, I glanced over at him. I was so happy and proud that he could still manage this task by himself. Reaching over towards him I placed a free standing counter mirror in front of him, just in case he wanted to see for himself the beautiful job he was doing. Josiah kept busy with his grooming and never glanced over at the mirror. Smiling at him I suggested he see how gleaming white his teeth looked. He just smiled and continued with his brushing. However something clicked in me at that precise moment. It was almost as though I heard a soft whisper in my ear. A voice, telling me something was very wrong here. Something, that he had been hiding inside would now make my heart ache for him.
I knelt down next to Josiah to actually see what he was capable of seeing in the mirror at his level. The large wooden framed mirror above his bathroom vanity just grazed the top of his head with his reflection. It was not to surprising to me that sitting in his desk chair the height was not exactly perfect for him, to admire his beauty. We had designed his sink counter top to fit the height of his wheelchair. Now with the counter mirror in front of him clearly he was well with in his range of viewing. Tilting it some more toward him, I encouraged Josiah to take a peek. Having just finished brushing his teeth, he wiped his face with his head still turned away. Somewhat giggling but very anxious to just be done he tried to scoot out of the room. "Josiah" I cooed "you have to see how beautiful your smile is". The closer I moved the mirror the more he angled his head to avoid his reflection. Gently I reached out to raise his chin. Slowly his smile faded. As he softly spoke my eyes watered. His beautiful little face looked up into mine with tears and almost whispering he told me he looked ugly.
Its moments like this that break my heart. I did not think a day had ever passed by where I had not praised my boys for their beauty and abilities. I had seen Josiah look at photos of himself. Never ever did I notice him to shy away from being photographed. Kneeling at his side I looked into the very sad eyes of my youngest, absorbing the pain he was sharing with me. How could this have happened? Holding him tightly in my arms, questions raced through my mind. What caused my beautiful boy to feel so bad that he could not look at himself in the mirror? Why did I not notice this sooner? Where was I when this happened? Most importantly what evil had made my child feel so badly?
We have all heard stories about bullying. Stories that have often brought us to tears because of the tragic, damaging harm it can cause. Hurting because as caring human beings it pained us to see others suffer. I know many of us have even been victims ourselves and can deeply understand this pain. I wanted to some how free my child from this hurt. Erase this horrible belief that he had accepted into reality.
Slowly and and with teary eyes Josiah confided in me the secret pain he had been hiding. He was well aware of the stares in public he receives. That was one hardship he dealt with, but recently he had also been the target of insults from some females at school. Ugly, was the word that seemed to have hurt him the most. The recent progression of his muscle disease has caused changes in his physical appearance, only enforcing his belief in the disastrous meaning of the ugly word. Very aware of the effects his limited ability causes, he longed to be like any other teenager, however in reality as harsh as it sounds, invitations are almost nonexistence and friends are not exactly lining up at the door to hang out with him.
I held him in my arms while he talked, fighting back my own rage that someone had caused my child so much pain. Together we both made it through that long tearful day. I manged to get Josiah to glance at himself in the mirror later that afternoon. It appeared his contagious smile had returned. Deep inside I felt so much sorrow that my son had to experience this sort of pain in addition to his daily suffering. He would have to continually accept the changes Duchenne will cause and would undoubtedly experience yet more low moments. I desperately wanted to cling to hope that he will see all the beauty he truly posses one day soon and love what he sees. As sad as it is though no matter how hard I tried to help him he would have to continue to share the world with ignorant unkind humans, something I could no more control than the weather. But, I will not give up on trying to change the effects these unkind words have on him. I am determined to keep all those that see him as the remarkable young man that he is close, very close at times.
Talking to Josiah's school and addressing the issue has opened many eyes and is provoking more awareness. While the episodes appear to have been isolated they are still being addressed. As a realist I do not believe for a second it will not happen again. I still will have concerns that Josiah somehow feels he has to hide things, even from me. Not only do bullied children often feel isolated but fear contributes to them hiding their pain. A child with a terminal disease often will try to hide anything outside thier disease for fear of feeling even more isolated. Just being aware as parents that more may be going on, is all we can do at times.
I know I can not protect Josiah from everyone and he will over hear things that may make him feel sad from time to time. The harsh reality of the world is, we as humans can be cruel even with out intending to be aka; sarcasm.
It pleases me though that I can see true joy and happiness with in my sons. I am so proud that all three of my sons do feel very loved and that I have managed to make that very apparent. Outside in the world beyond, the reality is- as parents, there will be moments when we will have to be a warrior for our children. That can be very tough and disheartening at times. Quite frankly in all honesty it causes me to deal with my own disgust towards society and acceptance. When I reentered into the dating world seven years ago, while my appearance may have placed me on a list to be desired the fact that I had 2 sons with special needs set me very much aside. Thankfully my happiness has never relied on the fate of falling in love. But as humans we all want to belong and have a place in this world that gives us that sense of self worth, most importantly though we need to be loved. I know my son is not alone and my heart goes out to all of us who have felt less at times.
As I have grown stronger on my journey I know " I would rather shine alone than be lost in the crowd" and as long as I am here" I will help my sons to always shine".