Thursday, June 14, 2007

More about the Trip to pick up Paul

Having had my son Peter become legally blind (and somewhat worse than legally blind), five years ago, I thought I could handle it happening to another one. Actually, I'm getting ahead of myself. It would be more true to say that during those five years since Peter first lost his vision, it had been unthinkable that it should happen to anyone else. We simply refused to entertain the possibility - until Paul called that January day, six months ago, with blurry vision. I was shocked and shaken. But his good attitude rubbed off on me. I told myself that if he could handle it so well, so could I. I told myself that I'd been through this before, so I could handle it now. And I threw myself into my blog. It was an outlet, something I could do...and something I could control. When Peter had lost his vision, I could throw myself into helping him learn all that he needed in order to adapt. Not so with someone who's an adult and lives in another state. There wasn't much I could do but pray. I couldn't even hug him across all those miles.

Paul's attitude did a lot to help the rest of us, as he was so faith-filled about it. His first words to me after he got the diagnosis were a serious but cheerful, "The Lord gives and the Lord takes away. Blessed be the Name of the Lord." That doesn't mean, of course, that he doesn't have an occasional difficult moment or day. That doesn't mean that he doesn't ever get bored or frustrated because of all the things he can't do any more (like drive or see the t.v.) and all the things he can't do yet (like use the computer or read a book).

Over the months, Paul and Mary and Joe have all said that they thought Paul's vision has become worse than Peter's. We here in Baltimore thought they might possibly be wrong, or more accurately: "surely they are mistaken". After all, Peter was so much younger and probably adapted more quickly. It will just take time for Paul to be able to do as well as Peter. Various members of the family have had many a telephone debate on this topic. Perhaps it was optimism on our part or just a refusal to accept what we didn't want.

Yesterday Mary picked me up from the Cincinnati airport and took me to the house where our absolutely wonderful friends are hosting Paul like a member of the family. Paul came down to the kitchen and looked at me. But he didn't, really. Over these past years I've been around a lot of blind people and I knew as soon as I saw the unseeing look in Paul's eyes that his vision is, indeed, worse than Peter's. I'm not saying he is totally blind; he isn't. And please pray with us that he can keep what vision he has. I've found that however little vision someone has, that little bit is still something they treasure. Well, when I saw him I wasn't shocked (as I had feared I might be), just sorry. And maybe part of the reason that it didn't hit me as hard as I had feared, once again, was his attitude. He looked - how shall I say? - perfectly comfortable with who he is. And that, after all, is very important. At last I could hug him! And he's so grown up; even his hugs are more grown up, more comfortable with who he is than when we moved away nearly a year ago.

We had a few hours until time to catch our flight back to Baltimore, and Mary, bless her heart, hauled us all over town at my whims. As we went shopping, I told Paul that Carla had taught me that if I'm guiding a cane user, the cane user should use the cane in his or her right hand and take my right arm. I said laughingly, "Of course, I won't be able to hear you if you talk," (being totally deaf in my right ear). He said, "I can use my left hand for my cane." I said, "Are you ambidextrous?" Mary said, "He is now." I felt a little guilty about "making" him use his left hand for his cane, especially since he's only been learning the cane for a very short time; but hey, it seemed to work out okay for us.

As we maneuvered through airports, sometimes I gave Paul my left arm and sometimes my right. I certainly kept him on his toes, with him trying to figure out where I was and where to put his cane, and my sometimes walking off without him, expecting him to just follow me as Peter would. We had some good laughs over that.

Our first crisis was when we came to an escalator...but it wasn't his crisis, it was mine. "Paul, we're coming to an escalator," I said with panic in my voice. He didn't undertand my concern, so I added, "I have a phobia of escalators," (especially down escalators). He hadn't known. I had always used escalators in spite of my phobia; I still do. "But", I explained to him, "if I had a baby with me, I always either took the elevator or handed the baby off to someone else. I can't let you take my arm and guide you on an escalator," I said, with rising panic at the very thought. He accepted the fact that I wouldn't guide him on the escalator and reassured me that with his cane he would know when he reached the bottom, so I guided him to the rail. He did fine, and after that, whenever we had an escalator, I didn't hesitate. I just helped him to the rail, dealt with my own interior struggle, and we were on.

And I suppose that experience helped prepare me for the fact that we were flying on a commuter plane, the kind where you walk outside and up a narrow, steep staircase onto the plane. When it came time to get off the plane, I was ahead of him and looked down that staircase in concern. The rails seemed to me to be in all the wrong places. We both had backpacks, I had my purse, he had his cane, and I have poor balance and bifocals, and there, looming before us was this down staircase. An employee looked up at me and asked, "Would you like us to get a lift?" Oh no, no way. First of all, they don't know that Paul is new to being blind, and I don't want them to think blind people are helpless. Secondly, all I need is for someone to think I can't do something and I will prove them wrong. Thirdly, I'm very afraid of this lift idea, and fourthly, what a huge delay that would be. All those thoughts swiftly and subconsciously came together in the space of a millisecond, but I think that the main feeling was a thought of Peter and what he would answer in that situation. I'm ashamed to say I didn't even consult Paul. I just processed all those thoughts in that millisecond of time and answered confidently, "No thank you; he can do it!" And as the man took my backpack, I guided Paul's hand to the rail. No problem at all. (Please understand, as you read this, that this was less a problem of my confidence in what someone who's newly blind can do as my own personal phobia of going down anything.)

As we waited for the plane, we talked, and I discovered that Paul is not only anxious to learn how to use adaptive technology (i.e. get back on the computer), but that he would love to learn Braille too. We had a nice conversation with a lady who was waiting for the same flight. She and I happened to go to the restroom at the same time, so I briefly told her our story, how Paul had only begun losing his vision a few months ago. Later on, after the flight, she and I were once again together, buying food, and she told me how well he is doing for his vision loss having happened so recently. Ah, praise of our child is always music to a mother's ears, isn't it?

We did have a lot of good laughs. Once I took Paul to the men's room and being restless, I forgot to wait outside the hallway to the doorway, and instead paced my way into that hallway, where a man walked in, turned on his heel and began to walk away quickly. I called him back, informing him with a chuckle that he hadn't made a mistake. I said, "I'm waiting for someone who is a cane user." I then asked myself why I said that? Why "cane user"? Why not someone who is blind? I really don't know. Maybe because someone once told me that someone was "a braille user". It felt less like labeling, and more like focusing on the strength. And believe me, cane use is a strength, as I saw on every staircase and (deep breath) escalator.

And Paul is our strength, too, in many ways. Yesterday we had a tornado warning; one was sighted about eight miles away, heading in our direction. We went to the most interior part of the apartment, but first I grabbed my flashlight. Being deaf in one ear, I don't do well in the dark...and if a tornado should hit, I wanted to be prepared. Paul grabbed his... cane? Nope, his rosary beads. Well, I grabbed his cane, because if a tornado should hit, I wouldn't want him to be without it. (By the way, I'm not phobic about everything. I just like to be a good girl scout and "be prepared".) So, we got settled in and I asked Paul to lead us in the Rosary. He led us with so much devotion; not because he lost his vision, by the way, but because he's Paul. And then we were done and the danger had passed, and he led the boys in playing animal, vegetable or mineral.

As he sleeps in, I look at him and forget that he's blind...and then I remember, and I wonder if he ever wishes he could wake up and find that it was just a bad dream. But I don't ask him that question. That, I think, is just my own thought, my own adjustment that I am struggling to make as I am able to spend a little time with him at last. For him, the waking up from a bad dream will be learning how to adapt. He has his books on CD. Now he's begun learning his cane use. When he can learn how to use computers, and hopefully at some point learn Braille, and learn all those adaptive techniques, his life will be as full as ever. Life does go on. The Lord gives and the Lord takes away. And the Lord gives again in mysterious ways.

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