What we thought would be a routine follow-up appointment with the paediatrician this week has left us reeling. They told us that, following B’s MRI scan, we would either be contacted or not contacted, depending on whether there was a concern or not. When we heard nothing, we naturally assumed all was as it should be.
I’ve written about it before, but B’s need for a scan has been one of the most difficult things we have had to deal with. The doctor unlocked in me some very deeply hidden suspicions and fears that something might not be quite right. I’ve only coped by putting it out of my mind. I wrote in my diary a ‘four week’ reminder- the point at which the results would be back, and the phone would ring. When that day came and went, I didn’t exactly relax, but it began to fade from the forefront of my mind.
This was a six month follow-up, so the test results seemed like a formality. There were other things we needed to discuss that I expected would set the agenda. The first doctor we saw did not mention the scan until I raised it. She had not been the doctor who had ordered the scan, but one of her team, and as such did not know about it. She looked through B’s notes and there, tucked away a few pages in were the results. It was the first time she had seen them.
She began to read them to us, but after a short time it became quite clear that this was something that the head paediatrician (who had ordered the scan) needed to deal with.
We stepped outside and waited for five minutes while the head paediatrician read through B’s notes and were then called in. “Have I contacted you about these results?”, she asked. We replied that she had not. “I should have done. I apologise”, she said, and proceeded to give an explanation of how such an oversight might have occurred. It’s since been suggested to me that such an oversight is pretty appalling but I bear no ill feeling about it. I respect the doctor and, well, these things happen.
Besides, what she told us made any indignation about being forgotten pretty irrelevant. The MRI scan shows that there are some ‘abnormalities’ in my son’s brain. These are of an ‘unspecific’ nature. He will need to be referred to the children’s hospital, where he will see a geneticist and a metabolism specialist. Blood tests and, possibly, further scans will be carried out. She probably said more, but not much more. She gave us no answers, or identified conditions, diseases, growths or anything else. She told us they did not know what was wrong inside my son’s head, but that something was wrong and it needed to be looked at by more specialist doctors.
The purpose of this blog is to keep a record of what has happened in our lives with an autistic son, and also to act as an outlet for my feelings as we go through it all. But there is no way I could ever put in words how I have felt this week. Perhaps I don’t need to. I don’t think I will ever forget the feeling inside my stomach that has been there pretty much permanently since the consultation. This has shaken me so, so much. I don’t know what you call the way I have been feeling. Dread? Fear? Shock?
One thing I know is that I’m sick and fucking tired of being the strong one throughout all this. I can do autism. I can deal with crap school’s, slow services, form after bloody form. I can manage my son’s needs, prop my wife up and show the family that we’re okay. But I’m struggling with this one. I’m terrified.
The worst part is not knowing. It could of course, be nothing, but my heart tells me this is not the case. Maybe this post reads as an over-reaction. With autism, I was able to read up on the condition. I’ve read everything I could get my hands on. It seems a bit pointless now to carry on reading. He’s still autistic but who knows what else is going on? It could be anything. I wouldn’t know where to start in looking into this. Besides, it’s too terrifying. My wife couldn’t resist the need to know something/anything, so of course has been online looking things up. It’s not helped. She’s in a worse state than I am, and I know I’m not helping her.
I need to deal with this for the sake of my son and the rest of my family. I can’t, like an idiot, ignore it or try to forget it this time. But I can divert my attention into the bits that I have a little control over. School starts in six days time. There will be more than enough to think about as we try to get him settled (not to mention making sure the school get it right). I’m also back at school next week and will be required to look after other people’s children, so I’ll have plenty of other demands on my time and attention. Perhaps six weeks of full on parenting has taken its toll! Anyway, I’ll be busy. Not too busy to worry myself stupid, I expect, but busy enough to get through the next few weeks while we await the next visit to a hospital.
We have about seven weeks to wait.