Honestly, I'd Rather Not Say. . .
One day after school this week, my middle son ran out to the yard to check on his sapling. There was nothing left but a small bit of trunk. My youngest squeaked excitedly, "A squirrel ate it!" and proceeded to gnaw on his brother's leg to demonstrate the squirrel's lunching habits.
"Oh no!" I exclaimed to my crying son. "Your daddy mowed it!" I was shocked at my husband's oversight, but I should have kept my revelation to myself. My words made the tears come even harder. Why had I not just gone along with the squirrel idea? It would have been so much easier had I let him imagine giant squirrels gnawing down the young tree.
Often my honesty wearies me.
Today I took my boys to the park--it was a gloriously beautiful bright azure sky and cool Spring breeze kind of day. We had pizza, Gatorade and Capri Suns and met some friends, and the little boys had a blast (one thousand gift #67: having fun at the park under the best of blue skies). D wouldn't get out of the wheelchair, though. I tried to coax him onto the swings, but no, he was sure he didn't want to move. He was watching the ball fields. The games had been canceled due to soggy fields, but he was keeping his eye on them just in case some activity started.
After giving up at getting D out of his chair, I parked him under a shady tree and went to push Ben on a swing. Ten minutes later a little boy was taking off the footrests of the wheelchair. I jogged quickly over and the little boy's father was just watching him. I was afraid D would hurt the child because he had wanted to be left alone, so I intervened. I told D to say, "Hi" as the little boy scurried to the back of the chair to take drinks out of the bag. The dad offered that the little boy didn't talk much either. He had epilepsy. My son did, too, I commiserated. The dad explained that the seizures were preventing his speech from developing. He asked if my son had CP. I told him that no, he had a degenerative neuromuscular disease. He shook his head sadly. I became tired. We talked a little longer and then both left soon after.
A couple of boys came over for a playdate when we got home from getting snowballs and asked why D was in a wheelchair. "He can't walk long distances" was my reply and echoed by my youngest. I'm teaching him what to say with my responses, I realized.
After Daddy came home from lunch and finished preparing our taxes, I took D to buy new shoes that he needed for ROTC. The issued shoes have slick bottoms and since D is actually going to march next week for annual inspection, he needed black tennis shoes. The salesperson said, "He's adorable," when he saw D approaching. The sales guy was in high school with D. "Adorable," is not a word I would expect a high school senior male to use to describe my 15 year old son. Oh, well. When D tried to leave out the front door a few moments later, the sales guy decided it was time to ask "the question."
"What's his. . .his. . .you know. . .his" I let him stammer for a few minutes and then put him out of his discomfort with "Diagnosis?" And I proceeded to tell him what I told the dad at the park. He said he knew how that was--he had had two broken legs last year. I tried not to show how that comment made me feel and told him that yes, he must know what it was like to have to be in a wheelchair. And then I was tired. I picked out a pair that didn't cost too much, watched D walk in them, paid for them, and went to Wal-mart.
Where there were no wheelchair carts. . .AGAIN. Why do they put the stupid "If you have disabilities and need assistance while shopping, please let someone know and we will be happy to assist you." sign up if that is not the case. Thankfully, I only needed three items and D was up to walking. I saw one of the teachers from my son's preschool and her children eyed my son in a way that made me tired again. But D did not let me focus on that for long because he was chasing a lady in a wheelchair who looked like she needed a friend. And she did. She was waving bye-bye to him later as we headed to the parking lot. He had made her day.
I need to come up with a new answer to what's "wrong" with my son. He is so much more than his disability and to focus on that--on that sad fact---is to miss his greeting the lady whose flaccid face brightened, or his matching capital and lower case letters at school (one thousand gift #68: D's academic achievement) in spite of evaluations saying there was no hope in his learning to read, or his carrying the hot dogs buns for me to the check out counter and when the clerk said, "Do you want another bag?" because they were slightly smashed, he said, "NOOOOO" and laughed with me at our joke.
So what do I say to those curious random people because honestly, I'd rather not repeat over and over what I am trying to fight or ignore or live with--whatever. "What's his. . .his. . .you know. . .his"
"Problem? Nothing. Absolutely nothing."
"Oh no!" I exclaimed to my crying son. "Your daddy mowed it!" I was shocked at my husband's oversight, but I should have kept my revelation to myself. My words made the tears come even harder. Why had I not just gone along with the squirrel idea? It would have been so much easier had I let him imagine giant squirrels gnawing down the young tree.
Often my honesty wearies me.
Today I took my boys to the park--it was a gloriously beautiful bright azure sky and cool Spring breeze kind of day. We had pizza, Gatorade and Capri Suns and met some friends, and the little boys had a blast (one thousand gift #67: having fun at the park under the best of blue skies). D wouldn't get out of the wheelchair, though. I tried to coax him onto the swings, but no, he was sure he didn't want to move. He was watching the ball fields. The games had been canceled due to soggy fields, but he was keeping his eye on them just in case some activity started.
After giving up at getting D out of his chair, I parked him under a shady tree and went to push Ben on a swing. Ten minutes later a little boy was taking off the footrests of the wheelchair. I jogged quickly over and the little boy's father was just watching him. I was afraid D would hurt the child because he had wanted to be left alone, so I intervened. I told D to say, "Hi" as the little boy scurried to the back of the chair to take drinks out of the bag. The dad offered that the little boy didn't talk much either. He had epilepsy. My son did, too, I commiserated. The dad explained that the seizures were preventing his speech from developing. He asked if my son had CP. I told him that no, he had a degenerative neuromuscular disease. He shook his head sadly. I became tired. We talked a little longer and then both left soon after.
A couple of boys came over for a playdate when we got home from getting snowballs and asked why D was in a wheelchair. "He can't walk long distances" was my reply and echoed by my youngest. I'm teaching him what to say with my responses, I realized.
After Daddy came home from lunch and finished preparing our taxes, I took D to buy new shoes that he needed for ROTC. The issued shoes have slick bottoms and since D is actually going to march next week for annual inspection, he needed black tennis shoes. The salesperson said, "He's adorable," when he saw D approaching. The sales guy was in high school with D. "Adorable," is not a word I would expect a high school senior male to use to describe my 15 year old son. Oh, well. When D tried to leave out the front door a few moments later, the sales guy decided it was time to ask "the question."
"What's his. . .his. . .you know. . .his" I let him stammer for a few minutes and then put him out of his discomfort with "Diagnosis?" And I proceeded to tell him what I told the dad at the park. He said he knew how that was--he had had two broken legs last year. I tried not to show how that comment made me feel and told him that yes, he must know what it was like to have to be in a wheelchair. And then I was tired. I picked out a pair that didn't cost too much, watched D walk in them, paid for them, and went to Wal-mart.
Where there were no wheelchair carts. . .AGAIN. Why do they put the stupid "If you have disabilities and need assistance while shopping, please let someone know and we will be happy to assist you." sign up if that is not the case. Thankfully, I only needed three items and D was up to walking. I saw one of the teachers from my son's preschool and her children eyed my son in a way that made me tired again. But D did not let me focus on that for long because he was chasing a lady in a wheelchair who looked like she needed a friend. And she did. She was waving bye-bye to him later as we headed to the parking lot. He had made her day.
I need to come up with a new answer to what's "wrong" with my son. He is so much more than his disability and to focus on that--on that sad fact---is to miss his greeting the lady whose flaccid face brightened, or his matching capital and lower case letters at school (one thousand gift #68: D's academic achievement) in spite of evaluations saying there was no hope in his learning to read, or his carrying the hot dogs buns for me to the check out counter and when the clerk said, "Do you want another bag?" because they were slightly smashed, he said, "NOOOOO" and laughed with me at our joke.
So what do I say to those curious random people because honestly, I'd rather not repeat over and over what I am trying to fight or ignore or live with--whatever. "What's his. . .his. . .you know. . .his"
"Problem? Nothing. Absolutely nothing."
I can imagine that you would just like a t-shirt to tell everyone, so that you don't have to continue everywhere you go to answer all those inquiring minds. And I know people are well intentioned, but I can see how very hard this must be for you, how very tired anyone would become in your shoes. And how some people would go ahead and be very honest, like w/ the guy who broke his legs. But then, as in your original story about the sapling, I'm not sure how much good that kind of honesty would do.
ReplyDeleteBut I think you need to respond in whatever way that is most helpful to you - in a way that will at least tire you out less.
I'm just "Miss Open Book" and feel like I have to tell everyone who asks the whole truth and nothing but the truth, so help me. . .but really, you're right, Anne Katherine. I only need to tell what I can, certainly not dwell on it, and go on with life because Life goes on. (A T-shirt might be fun, too, though! :)
DeleteGinny - I agree with Anne, that's is *you* that you should consider the most in your response. In most cases, it seems you don't want either to be flippant or to have an extended conversation about D's situation. I think your idea of keeping a few pat responses in your arsenal are good that you can repeat (whatever those are), especially ones that are short and to the point. I always think leaning on the exact medical terminology can be easiest, and can also discourage more discussion/questions. So you can still tell the truth, but just perhaps not all of it. And there is so much that is "right" with your son, and I'm sorry that people's questions make you feel otherwise. -A
ReplyDeleteAlexandra, that's funny you mention using the medical terminology because that is usually my pat response, but nobody has ever heard of mitochondrial disease, so I have to explain and that's where I get bogged down emotionally. And if I say a degenerative neuromuscular disease, they usually run through a list to which I say, "No, no, no, no, actually it's mitochondrial disease." They've never heard of that, so I end up explaining anyway. I could get some flyers from mito-action.org and just hand those out. "It's mitochondrial disease and here you can read all about it." :0)
ReplyDeleteHow about "A temporary condition, but one day he will be completely healed!" ???
ReplyDeleteThat's exactly it, Heather! Thank you--I now have my pat response. And thank you for your package. When I saw your name on the box yesterday, I was curious and when I read your card and wrapped up in the shawl, I was in tears. Thank you so very much! I can't tell you how much it means to me--
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