Posted by: christinelaennec | June 10, 2012

The Dafter: 10-Month Report

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.

Dafter art (kitchen table doodlings in fact), June 2012. I think it looks like a design for a needlepoint carpet!

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:

Drawing from a photograph, of actress Sydney Rae White as Erin in Young Dracula (The Dafter: “CBBC show, it’s really good, you should definitely check it out!”)  by the Dafter. June 2012.

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!

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Responses

  1. You don’t need me to tell you what a bright and talented dafter you have there, Christine. She won’t fall behind, and her strength of character and natural gifts will help her to fly, when she she emerges from the other side of this wretched ME. My best wishes to to you all.

  2. Your post touched me deeply Christine…must be so hard for parents to see their child being ill and not able to do the things she would love to do…But you are wonderful together and you’ll manage… the Dafter is wonderful artist, (I can’t even draw a tree…) Hope you are all fine…
    Hugs
    Erna

  3. Christine, you are doing an amazing job as mother and wife and worker – keeping all the balls in the air while doing cartwheels! The Dafter has done so well to tackle her weight when she has no energy and must be feeling so low. I thought she was looking slimmer in the last picture you posted on the blog, but didn’t want to say so – now I can! I really hope you get the help you need with her schooling, but there is plenty of time for that – the most important thing is that she gets well and that you STAY well! Look after yourself too, missus! That’s an order!

  4. Your daughter is amazing. A really, really talented artist. Well done all of you for your determination on all fronts. Even at a slow pace its all moving forwards.

  5. Very inspiring post, Christine. With all the love and support she has, I’m sure your daughter will soon come out the other side of this very difficult time. She is hugely talented, and has great determination. A wonderful combination in one so young. Love, Tina xx

  6. Wishing your daughter continued improvement on her road to recovery.

  7. What a beautiful drawing!
    The grace and gentle determination with which you write about your journey is inspiring to read. My thoughts and prayers are with you all xo

  8. My (thoroughly grown-up) children have artistic ability, although neither parent possesses any, and one daughter went to Art School Remembering what my lot could do as teenagers, I think the Dafter is really genuinely very talented indeed. And for her to lose so much weight when it’s hard to exercise is an amazing achievement for her, and also for you. I think you’re all coping tremendously well with an incredibly difficult situation, and I hope so much that she will be better soon. Good about the educational provision, and a head who knows about the problem.
    Very best wishes to you all – including the lovely Tilly.

  9. Hi Christine,

    It is a lot to cope with and one’s heartstrings are so pulled when it comes to our children going through so much. First getting it diagnosed then adjusting to what’s best for the Dafter, plus working and continually making adjustments almost on a day to day basis is to be commended.

    My friend Jean who your saw on a couple of my London posts, her husband has ME and has had for a long while. It is a matter of working with the present, not looking back at the past, and achieving small term goals as you have done with the Dafter. Her art is nurturing. And little creatures like Tilly help so much.

    Christy
    Lil Bit Brit

  10. thinking of you and your family as you face this daily. i can’t imagine how exhausting it must be for all of you. i wish for a speedy recovery for your daughter.

  11. Thank you, Christine, for the update. I know what it’s like living with exhaustion and chronic pain and I have felt for your daughter over the past ten months. I’m praying that the recovery time will be much shorter than the diagnosis indicated.

    She is a very talented artist! I love both pieces of her artwork! I have a feeling that, in the long run, she will look back and realize that she did, indeed, grow during this time. Will be praying that all works out for her to have the perfect home school tutor. Will continue to keep you all in my prayers…

  12. Thank you for the update, I often wonder how the Dafter is doing, I remember this all started when I was being so ill in early pregnancy and couldn’t do much either. Glad to read things are progressing, if I lived near you I would come and entertain her for half an hour every so often, I’m sure all your readers would do the same if they could! Keep smiling Dafter, and well done on your weight loss, it’s not an easy thing to do.

  13. This sounds like a pretty tough row to hoe, my dear, but you are blessed with a talented and determined daughter and that, combined with your dedication, will help see you through this. I’m glad you are finally going to get some tutoring help and I hope that you are taking good care of yourself too. p.s. Did you know that Laura Hillebrant wrote Seabiscuit when she was suffering through a similar situation?

  14. Thank you for posting this Christine, it’s really nice to get more background and an update on the situation. You’re very good at making your readers feel welcome into your family by sharing this,

    The Dafter’s artwork is superb! I love the colourful picture at the top, it’s beautifully done, very nicely balanced and a joy to look at. Her portraits are astonishingly good too, both this one and those on the other page you linked to.
    Maybe this is one blessing of having been at home so much with the opportunity to be creative. Sometimes at school you have your creativity beaten out of you (I feel that kind of happened to me with art, which I failed dismally!) because teachers want you to do something a certain way, but the Dafter is expressing herself on her own terms with her art and that’s wonderful to see.

    Her weight loss is amazing, congratulations to her on that, it is an incredible achievement in her situation. I really hope that things will settle into a good routine for the schoolwork and work schedules. I can see you have a lot to deal with and it must be stressful at times, but your attitude to enjoying the Dafter every day is inspirational.

  15. I too, thank you for your post, Christine. I am relatively new to blogging and recently put your blog on my blogroll so that I can follow your postings and better get to know you….I trust that is ok with you?
    While I also am sorry for the current health challenge you are facing with Dafter, I am so excited for her that her artistic ability is thriving! Such beautiful work!!! Also, her weight loss is an encouragement to me since I have struggled with being overweight during my 61 years of life. I have been within a few pounds of an appropriate weight for about 8 seconds as an adult, 🙂 and currently have been making slow progress in losing over the last few months due in part to a pulled ligament/muscles while trying to exercise. Sigh…Dafter’s good example cheers me on!
    After many days of gloomy skies with Mt. Hood hiding here near Portland, OR, the sun is shining and the sky is blue!!!
    I pray for God’s blessing on you and yours…that you may grow in good health and know much joy!
    Gracie ❤

  16. What an inspiring story. I pray for your family. The art is incredible, what a talent. Blessings to you all xxxx

  17. Thank you for the update. I think about the Dafter quite a bit, especially since my sister suffered from chronic fatigue herself. I am SO pleased about the education situation; the teacher sounds understanding, and the tutors will be wonderful. Your minister’s advice hit home with me, particularly his first point. I often have a perfect ending in mind. I really need to let that go.

  18. Christine, the love and devotion that you have for your daughter is so apparent in your words and dedication to her wellbeing. You are an inspiration! Your daughter is also amazingly inspirational – to persevere through her illness and still lose weight and create such beautiful art. It shows incredible strength of spirit. I am praying for your sweet daughter and your family that you have every blessing you deserve. xx

  19. Like Flora Alexander, I have no qualifications other than as the mother of an artistically talented child (not the dizzy heights of art college, but an A in AS level Art!), and I can say from experience of our school’s Art School that the Dafter’s ability in drawing equals that of the top A grade at A level students’ work I’ve seen.
    Well done on the weight loss – no easy thing when unwell and at home all day.
    Echoing others – look after yourself too.

  20. Dearest Christine,
    It is good to hear that you are still keeping your spirits up and continuing to look on the bright side. The Dafter will get better I am sure as she is thinking positively and setting her mind to it as the weightloss shows.
    I hope Michael’s situation will sort out soon and that you can find time to rest and relax with a little knitting, as well as reflect for your own well being from time to time.
    Thinking of you, always in my heart.
    Heike xx

  21. You do anything when your child is ill, and you sound like the most loving parents. And you seem very practical too, figuring out how you can help her, and make others help her, like with the school. Keep on being positive!

  22. Thank you all from the bottom of my heart for your encouragement and good thoughts. I do know that I have to make my own well-being a priority, but it’s nice to be reminded. And thank you most of all for saying that the Dafter’s talents and strengths will carry her through. Part of me knows it to be true, and part of me is hugely grateful to hear other people confirm it.

  23. May I add my message of support too. Such an awful and frustrating condition for anyone to go through and it must be heartbreaking for you and Michael to observe too. Dafter does indeed have a wonderful talent which I hope will help her through. Love and best wishes to you all.

  24. This made me cry! You have a daughter with a great dispostion and a doctor who is wise. I will prayer specifically for the logistics of your workload and that of your husband.

    The Dafter’s art work is impressive.

  25. What amazes me, Christine, is that despite all this happening in your life, you are still providing so much love and support to people outside your family.

  26. Dear Cordelia, Kelly and oldblack,
    Thank you very much indeed for your kind words, and for your prayers. oldblack I know you do exactly the same! (It is true that when you’re feeling down one of the best things to do to feel better is to help others.)

  27. what struggles your daughter has faced…she sounds amazing and I’m sure that she’ll emerge from all of this a wonderfully sound and even stronger person because of all that she’s facing. She is so blessed to have such terrific parents!

  28. oh and I meant to comment on her drawing…WHOWZA!!! she is very talented!


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