Memories are funny things. When I started trying to write this entry, I tried to remember how long it was from when they took the first blood test to when the genetic specialist told us I had 22q11.2 Deletion Syndrome. I couldn’t remember. Husband looked it up on my LiveJournal (which is a private online diary where I wrote everything down) and found everything we needed to know.
I didn’t remember that there were two separate blood tests and that the second one after we’d already gotten the results was the bad one. I thought there had only been one test. I didn’t remember that the reason she wanted to test me twice was that there were other anomalies in my blood that the specialist wanted to check. I didn’t remember any of that. But some of the memories I do have from that test are very vivid. It was a very horrible experience.
I remember going to the dingy office of the children’s hospital to where I was supposed to get my blood taken. I remember thinking that it looked more like a prison or something rather than a children’s hospital. There were no bright colors on the wall, no toys in the waiting area, no nothing but a small partition where the technician sat and called people back. There were a lot of plastic chairs in the small room, that was it.
I remember that they had to take many tubes of blood and all from my hand. The woman who took my blood wasn’t dressed as a nurse and didn’t talk to me at all, except to tell me she was having trouble getting blood from me. I remember she was an older woman and I think she must have been a manager because she was talking to her colleagues about schedules even as she kept moving the needle around my hand to get blood.
She was talking to her colleagues despite the fact that I was crying. And these weren’t small tears, either. It hurt so bad, I was sobbing.
She didn’t seem to care at all. She wasn’t kind or sympathetic. She had absolutely no bedside manner. I realize she was preoccupied with work issues, but kindness at that point in time would have been very much appreciated. I would have been appalled to have been a parent standing there watching while a child cried and the person taking blood showed little to no interest in the patient. I hope she did better with the children than she did with me. Somehow, though, I have my doubts.
To this day that is one of the worst experiences of someone taking blood I have ever had. The pain of the test was horrible enough on it’s own. There are many, many nerve endings in the hand. To have someone moving a needle around in it constantly over the course of a blood test, well, let’s just say it was excruciating.
The lack of compassion made it even worse.
But even with those memories of how bad the test was, I remembered something else even more strongly: Mom’s reaction to the news. To this day I remember what she said to me because it shocked me.
I called my mother when we got home to tell her about the results of the earlier blood tests. “So, they told me I tested positive for 22q. All of my problems are genetic.”
“What a relief it is to have some answers,” Mom said. “All these years I had wondered if I did something wrong during the pregnancy.”
I was stunned. My mother thought she might have caused my condition through something she had done? My mother is a very careful person. She is meticulous with her desire for perfection. To have to carry around a burden like that wondering…
“Well now you know,” I said. “It wasn’t anything you did, it just happened. I just have some pieces that were deleted. So, really, it should be obvious that I’d be bad at math,” I smirked. “I’ve been bad at division since the womb!” We laughed together at my joke.
I don’t remember much else of what was said after that. I just remember how relieved my mother was to learn that there was a genetic answer to all of my problems.
I remember hanging up and telling my husband, “Mom thought she might have caused all of my problems during pregnancy. How awful!”
Husband agreed with me that would be pretty horrible.
I sometimes wonder why it had to be me. Why did part of my 22nd chromosome decide to delete itself? In car accidents, people look at the various factors that might have caused the crash. Was the driver distracted? Were they speeding? Was the pavement wet? With genetic problems, things are a little more complex. Doctors can look at the parents genetic history and determine if anything in the family history produced the problem. Parents and infants now are both routinely screened for such things.
In my case, neither of my parents carry 22q11. What happened to make me the way I am wasn’t anybody’s fault. There isn’t any one cause we can pinpoint.
It just happened.
And I am the effect.