While half the world was being stupid about some calendar that ran out of space today, we were facing something a bit different. Today was Maddy's endocrinologist appointment to discuss her enlarged thyroid. Yesterday we had blood results that told us that she had reasonably significant levels of antibodies in her blood, indicating that her thyroid was under attack, resulting in the enlargement and the other high blood test results. That was frightening, google frankly not being somewhere you want to do any research on that and the fact that her consultant appointment had come through in less than 3 weeks was pretty scary too.
One way or another, today was really going to be the end of one life and the start of a new one for us. I'm smart enough to know this was not going to be nothing, even if I could hope it was a manageable something. Maddy has been very stoical about blood tests and worry and wait, but she was very frightened by today; it's a sad fact that we are now a family trained to expect the worst and it had suddenly dawned on her that not only was something really quite wrong with her body but that we were worried and not entirely able to reassure her either. In addition, knowing it might come up, we'd had to have a long talk with her this week about the fact that she has had an aspergers diagnosis since she was 4; it sounds stupid but it never really came up to talk to her about it in terms of a label. We've often discussed aspects of it and how they affect her with her, working on coping strategies and so on, but we've never given it a name. I wanted to avoid turning it into something where everything was difind by it; i hate reading all that 'my daughter (who has aspergers) did this' stuff. Maddy is just Maddy, regardless if dx. It was always in my mind to talk more about it when she was 10, but so much enormous stuff happened that year that it wasn't the right time. She took it well, I have no regrets in retrospect about how we handled it, but it was a big couple of weeks for her.
The appointment today went as well as it could really; I've had concerns for a long time about aspects of Maddy's hormonal development and been brushed off by doctors. Turns out I was almost certainly right and much of her difficulties, dry skin, anxiety, shortness, tiredness and perhaps even her difficulties with spelling and so on, can be explained by what is happening to her body. Something, we don't know what, has triggered her body to attack her thyroid and it has been damaged. It's working too hard trying to make up for the damage and her body is under strain. There is a name for this, Hashimotos, and it will probably not get better. She has been started on a thyroxine dose and is likely to be on that for life. Sometimes things pull themselves together post puberty, but less often with this version. Luckily, and I'm trusting the bits of the Internet I dare read and the doctor, it is very treatable and manageable.
It was a difficult appointment for her and she was much more emotional than she is comfortable with,
I hated seeing her frightened, I hated being in a room with one of my children where cancer was mentioned, even though it was being used as something NOT happening to her. I hated seeing her vulnerable and afraid and having to deal with something huge. I hated knowing she was afraid. I was gutted when she told me later that, like me, she has been secretly terrified it will affect her beautiful singing voice.
It doesn't matter that this is something that can be managed. Yet again all of my children are frightened by something happening to one of their siblings and my heart has just broken a little for all of them. We deserved one year off fear and worry and unknowns. We deserved some time off looking down the barrel of a gun. And most of all Maddy, lovely, gentle little Maddy, just deserved not to have to have worry about herself.