Regular readers of my blog will know that the Dafter, who is now 14, has been unwell for a long time. Nearly 10 months, in fact. Because so many people have left incredibly kind and encouraging comments here – and I’d like to thank you once again, from all our family – I thought I’d write an update.
The background is that, after one day in a new school, she fell horribly ill with throat, sinus and ear infections. These took a long time to abate, even with three courses of antibiotics. For example, over Christmas-time (four months since the onset of the infections) she spent three sleepless nights propped up on pillows, terribly congested. She was put back a year in school in the New Year, and we were all hoping that perhaps by Easter she would be completely well. However, that was not to be. Many days she couldn’t manage to go at all, and when she went even for one lesson, she would need a few days to recover. She had no chance to integrate with her new class. One girl asked her “do you go to a different school when you’re not here?” The last time she went to school was on February 22nd. She went for one lesson, which she couldn’t understand because she couldn’t concentrate for that long, and came home and cried her heart out. Since then, she has had numerous tests for various conditions and diseases, and has been diagnosed with severe M.E. /Chronic Fatigue Syndrome.
She has her good days and her bad days. On a good day we can go out with the wheelchair and be out for two hours; on a good day she can read for a while (perhaps 15 minutes if it’s something new, longer if it’s something she’s already read), do some art, or play the piano for a while. Often she needs to choose one of the above as she won’t have energy for more than one activity. When she’s having a bad day, she can only lie around and listen to music or watch something on DVD that she’s already seen. We massage her feet, keep her company and try to make the time pass. I’m happy to report that her gland pain and sore throat rarely bother her these days – knock on wood. We are also blessed insofar as she sleeps through the night. We’ve kept track of her activities for a few weeks, and are working on figuring out a programme of pacing.
One of the challenges of ME is how isolating it is. The Dafter still has two friends from primary school, whom she sees every few weeks. And she’s friends with the neighbour downstairs, who is nearly three years younger than her. Other than that, she pretty much sees Tilly and us, poor thing. But she still manages to laugh and be creative, and I dare say she will come through this with far greater understanding of herself than most teenagers.
I’ll also let you in on a secret, which is that when we went on our first visit to the paediatrician, some concern about her weight was expressed. I had never weighed her, had never wanted to make weight an issue – the Dafter is naturally a healthy (and vegetarian) eater and that was our focus. But she’d put on weight by virtue of being so inactive, and also because eating would give her a short energy boost. The doctor said that she’d most probably reached her full height, which was good to know. When we got home (this was the same day that we were told recovery usually takes 4 – 5 years so we were all a bit dazed) the Dafter asked me to help her lose weight. So I did, and I am extremely proud to tell you that she has lost over 20 pounds now (a stone and a half). Not easy when you can only walk about 50 yards before needing to sit down to rest! So since the end of February she’s been hungry as well as tired a great deal of the time. She hasn’t had any sweets, with the exception of Easter, in over three months. I knew she was a very determined person, but now I know without a doubt that she can do whatever she puts her mind to.
When it became clear that she was too unwell to attend school, we tried to find a way to have her tutored at home. (We’d been trying to help her keep up with schoolwork during the fall, and it became clear to all of us that she needed us to be her nursemaids and supporters, not her teachers. I know many families homeschool and I take my hat off to them, but our talents do not lie in that direction.) There is a team of home tutors for children who are ill, but it wasn’t until a few weeks ago, after several other appointments, that we found the key to accessing their services: your child must be enrolled at a state school. If your child goes to an independent school, you’re on your own. So Michael took the Dafter to her fourth school in two years, the local comprehensive high school. (She began at another school because she’d hoped to continue with Gaelic.) They had one place left in the year below where she would have been had she not fallen ill. The head teacher there has experience of children with M.E., and told her she must take things at her own pace, and be kind to herself. Amen to that!
The woman who is a link between the school and the specialist tutors’ team is coming to meet the Dafter next week. School finishes on the 29th of June, so it may well be that nothing will start until August, but we’ll see. At last we are going to receive some help with her education, and we’re all relieved about that. She’s been very conscious of falling behind, but I’ve pointed out to her that she is learning other things, such as fortitude and patience. And her drawing skills have continued to develop:
Since January, Michael and I have managed to juggle work schedules so that one or the other of us is at home with her during the week. However, due to factors entirely beyond anyone’s control, Michael’s working arrangements have recently been shot to pieces. So there’s uncertainty about how we will be able to continue. But the most important thing of all is the Dafter’s recovery, and that is our top priority. The advice my minister gave me in October still helps me every day. He advised: 1) not to cling to one specific idea of how all this should turn out; and 2) to enjoy her every day. The second is never a problem for me! Even when she’s very unwell, she’s a joy and a delight.
Thanks again to all of you for your good wishes, support and prayers. They have helped a lot.
I hope this finds you all very well!