This is my 11the day of blogging. So far I haven't had too many problems coming up with topics to write about. I guess, we do have some stuff going on. And today is no different. Just another example of how things are going, going, going and then a dip can come up that puts me on an emotional tale spin.
I am highly distracted, right now! And it only took one phone call to do it. Basically, I was taking the dog for a run around Burns Field. Its a beautiful day. I looked at my phone and I had a message from the Geneticist's office. They want to schedule an appointment, for a follow-up. After I got done with the coordinating the appointment with another appointment Javy has for his post-op follow-up, it struck me. Does this mean that they have the results already from the urine test I gave them about a week ago? Do we have a diagnosis? My mind is racing. Usually, when a test result is negative, they just call and send a note. The last time I spoke to the genetic's counselor, she said that once the lab got the sample, it would take a couple of weeks and then maybe Dr. Slavin would see him before the end of the year, when they come to Kauai, again. At least, that's what I think she said, maybe I heard wrong. I don't know. I can't find the paper from the last notes that told me what they were testing for. And it took me almost two years to get the sample of urine. So if it is a diagnosis, my lack of coordination prolonged it. Do you know how hard it is to get a sample of urine from someone who isn't potty trained, plus it has to get to the lab on a certain day, before a certain time because they have to freeze it to send it to Stanford's genetics lab. So I kept putting it off and was like, why bother, it will just be another negative test. All of this thinking could be for nothing, so I left a message with the genetic's counselor. She hasn't called back, yet.
All of this going on and on in my mind. My mom is trying to talk about other stuff, I can't focus on it. I told her to proceed, knowing that I'm not going to remember what she said, later. I tried mowing the lawn because that usually clears my head. The neighbor behind me with the beautiful yard, interrupted me. I'm afraid, I was rude to him. He was saying something about the banana tree flower. I told him he couldn't take it, we were going to keep it. Then I turned the lawn mower back on and kept mowing. He just stood there watching me. No more man, I'll show him no more man. (That's what he said about me, when he was complaining about my yard.)
I'm forcing myself to even blog about this, but this is what its about. All parents have similar issues, no matter who their child is. But this is what its like being the mother of a child with an undiagnosed disorder. I try to just go on, live a normal life, making adaptations when necessary. I work, take care of my family, take care of my yard and my home, try to make a safe and good home environment for Javy. Then just like that things can change.
You maybe reading this, thinking that's great, Doris, a diagnosis. And it is, maybe, I don't know.
I am highly distracted, right now! And it only took one phone call to do it. Basically, I was taking the dog for a run around Burns Field. Its a beautiful day. I looked at my phone and I had a message from the Geneticist's office. They want to schedule an appointment, for a follow-up. After I got done with the coordinating the appointment with another appointment Javy has for his post-op follow-up, it struck me. Does this mean that they have the results already from the urine test I gave them about a week ago? Do we have a diagnosis? My mind is racing. Usually, when a test result is negative, they just call and send a note. The last time I spoke to the genetic's counselor, she said that once the lab got the sample, it would take a couple of weeks and then maybe Dr. Slavin would see him before the end of the year, when they come to Kauai, again. At least, that's what I think she said, maybe I heard wrong. I don't know. I can't find the paper from the last notes that told me what they were testing for. And it took me almost two years to get the sample of urine. So if it is a diagnosis, my lack of coordination prolonged it. Do you know how hard it is to get a sample of urine from someone who isn't potty trained, plus it has to get to the lab on a certain day, before a certain time because they have to freeze it to send it to Stanford's genetics lab. So I kept putting it off and was like, why bother, it will just be another negative test. All of this thinking could be for nothing, so I left a message with the genetic's counselor. She hasn't called back, yet.
All of this going on and on in my mind. My mom is trying to talk about other stuff, I can't focus on it. I told her to proceed, knowing that I'm not going to remember what she said, later. I tried mowing the lawn because that usually clears my head. The neighbor behind me with the beautiful yard, interrupted me. I'm afraid, I was rude to him. He was saying something about the banana tree flower. I told him he couldn't take it, we were going to keep it. Then I turned the lawn mower back on and kept mowing. He just stood there watching me. No more man, I'll show him no more man. (That's what he said about me, when he was complaining about my yard.)
I'm forcing myself to even blog about this, but this is what its about. All parents have similar issues, no matter who their child is. But this is what its like being the mother of a child with an undiagnosed disorder. I try to just go on, live a normal life, making adaptations when necessary. I work, take care of my family, take care of my yard and my home, try to make a safe and good home environment for Javy. Then just like that things can change.
You maybe reading this, thinking that's great, Doris, a diagnosis. And it is, maybe, I don't know.
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