Monday, May 20, 2013

"I want to see"


"Open the eyes of my heart, Lord,
Open the eyes of my heart, 
I want to see you...
I want to see you..."

When I was in 8th grade, I read a book about the Seeing Eye and I wanted desperately to work with blind people. Back then, I wanted to be a trainer for the Seeing Eye, later a veterinarian for the Seeing Eye. I read every book I could find about blind children, and Annie Sullivan was my greatest hero as I imagined how amazing it must have been for her to open the world of  knowledge and learning to Helen Keller.  I wanted to be like her

In the past 30 years I have worked with countless numbers of children: some blind, some visually impaired, all of them unique and wonderful children.My first classroom of students are now over 30 years old (gasp!) and I still think of them as preschoolers. For more than 25 years I have been working with infants, so if you do the math, they are no longer infants, yet I still call them "my babies". I can honestly say that I love each and every one of these children with a love that is unique, a love that gives them freedom, a love that gives their parents hope, and hopefully comforts them during the very difficult years when they are coming to accept their child's blindness.

Now, almost 4 decades since I read the book about the Seeing Eye, I am the mother of not one, but 2 children who are blind. This was not something I had always planned to do: adopt blind children. It was never soemthing that was my goal. I remember many years ago, teaching  a little girl who was blind and adopted from China. Her mother told me we should adopt a blind child, as  Matt and I were adopting, before we had our birth children. I laughed at that mom, and told her I should not, because I did not have the luxury of being naive about the challenges we would face, but would know them clearly, and have to face them head-on, with no excuses, and no learning curve.

And here we are. For those of you who know our Shane, you know that his blindness is not his primary handicapping condition. Yes, it is a big deal, but not as big a deal as his language and cognitive delays. Parenting Shane is parenting in uncharted waters for us as we learn about respite care (awesome), ABA classrooms, and augmentative communication systems. It is slow and painstaking, and often frustrating, but the rewards for the gains he makes are huge. 

Vincent is like a sighted child who cannot see. Vincent was born with vision, and had vision until he was about 2 years old. He remembers seeing, remembers getting 'sick' and remembers losing his eyes to cancerous tumors called retino blastoma (RB). I took him last week to the ocular oncologist at Will's Eye Hospital in Philadelphia. He was as good as gold, surprising all of the doctors with his mastery of English, his good humor, and his ability to take his prosthesis in and out himself. Again and again they asked how old he is, how long has he been here in the states? One of the doctors walked in the room after we had been waiting for a while and asked "Vincent, how are you?" Vincent did not even hesitate "Hungry!"

While we were waiting for the doctors, Vincent asked if he would be getting 'new eyes'. I told him that they might need to get him new prosthesis when he gets older, but not right now.He looked up at me and said, "No, I need new eyes now. I want doctors to give me new eyes. Seeing Eyes."

My heart skipped a beat, my breath caught in my throat. I looked into the face of the most angelic little boy, and had to tell him the truth. He wanted to see, he told me, like all the other kids :Mickey, Sarah, Meghan, Shannon, Maeleigh, Sophie. He named them all. Tears filled my eyes when I told him that the doctors could not make him see, that his eyes were too bad in China, and they had to be taken, and that he would not see. But I told him I would help him to do everything else he needed to do, that there would be nothing he would not be able to do if he wanted to try, to learn. He seemed content with my answer, and didn't say much after that. But I was not content.

In the past 30 years, I have never felt the feeling of parents who wanted their child's fate to be so different than what it was, but I felt it strongly and bitterly at that moment. I wanted my child to be able to see. I wanted him to see the snow on the trees, the buds on the blueberry bush, the face of his parents and bothers and sisters, the love in our eyes. I wanted him to know the joy of every moment through his own eyes, to experience the world through sight, a sense so many of us take for granted every minute of every day. I wanted Vincent to have Seeing Eyes.
In the three months since Vincent has been home, he has taught everyone he comes into contact with so much about life, about joy, about 'seeing' what is really important. He has shown us how desperately he wanted a family, how much he did not want to live in an orphanage. From the minute we met him, he engulfed us with his love (sprinkled with a few hours of screaming a day!), his amazing wit and his incredible intelligence. Our busy, busy family has become complete with the presence of this little boy, and our lives will never be the same because he has become our son.

 There are so many things in life for Vincent to 'see', so many adventures ahead of him. He will never see as we do, that's a reality that we all have to deal with.I expect that he will mourn the loss of vision all his life, as I know I will. As he gets older he will learn that there are very few things he will not be able to do, few obstacles that will be in his way that he cannot overcome. He will see things with his heart that we will never see, and because he cannot see, he will make us see for him, and thus enrich our lives so deeply.

Vincent may never get his "SeeingEyes" in this lifetime, but surely he will in the next. For now, we will be his eyes and we will show him all the wonders of this world. I will hug him tighter and harder to show him him the love in my eyes even as he cannot see it.