Navigating adolescent CFS

The gift of kindness. January 21, 2013

Filed under: CFS Treatments — parentingcfs @ 9:05 am
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Hey all.

This is a post I promised back before Christmas and well, one thing led to another and now it’s a month later.

I wanted to share some lovely stories.

As you may know, our girl started high school last year. For the first 5 months she was able to attend everyday although she didn’t participate in sport. For some reason, late in second term, she started going downhill again and has been to school rarely since.

I could (and have!) puzzled through the reasons for the sudden change but that’s not what I want to write about today. Today’s post is about the generous spirits that one meets in life.

I will always be incredibly grateful that our girl got to experience those first 5 months of high school. It allowed the school to get to know her potential and personality and her to make friends.

Two of these friends have visited her several times since her health worsened back in June. The first time, they brought her a suitcase full of little presents and a card signed by the class with a piece of news about each person! Those of you with ill children will understand just how precious this thoughtfulness was. They never came empty handed and then, late last year, they called me to ask if they could throw her a surprise Christmas party as she had missed out on so much!!!!

These are 13 year old girls I must remind you… exquisitely heartwarming is this behaviour? I asked if they could keep the numbers below 10 and the party short and in mid December I took our girl over to one of the friend’s places where she was duly surprised! And again showered with presents!!!

While I had a cup of tea and chat in the kitchen, I caught occasional glimpses of our girl. At the surprise, she had tears of pleasure on her cheeks. After an hour, she said she wanted to try to stay for another half hour. And then another half hour after that. When she finally dragged herself into the car she was quietly radiating joy and utter disbelief that others would do so much for her. “I can’t believe they did all that for me,” she said. (As her doting mother of course it seems only natural to me but I may be biased!)

Is our girl special and kind like these girls? Yes, of course she is. Would she have thought to organise something like this if the situation were reversed? Possibly. Could I have bought this positive support (and the impact on her emotional and physical health) from her peers? Never in a million years. These interactions, when she is missing out on so very much, are priceless.

I am so touched by the generosity of spirit shown by these girls and other young people who have made a difference to my children’s lives. When our 11 year old son was struggling with bad muscle pain before Christmas his cricket coach (only 16 himself) quietly juggled fielding positions so that our boy could stay on the field as long as possible. Without being asked. Priceless. Priceless. ( On a side note the pains came up again the one time our boy played a lot of cricket these holidays but otherwise he’s been pretty comfortable as long as he stays hydrated and fed)

I hear from other heartbroken mums whose daughters and/or sons have been ill for many years, or whose peers have moved on to university/ jobs etc, of how isolated their housebound children have become. It’s terrible for the children/young adults and a further knife in the heart of parents who have watched so much taken from their child/ren already and are trying, day after day, to keep everyone’s hope alive.

Many of our daughter’s friends from primary school are the daughters of my friends so it’s easy for me to mention we need a visit. I make our house as welcoming as possible to anyone who wants to drop by unannounced. But to have our girl’s high school friends independently organise things to make her feel As you can see I’m still in awe. Of course my daughter is a fabulous, wonderful person but sadly people get so busy in their own lives that she could be easily forgotten if she remains invisibly at home. I dare to hope this won’t be the case and I will do everything within my power to stop it happening.

Have you got any good stories to share about small (or big) kindnesses that have made a difference to your child? Or maybe you are the kind one yourself. If the latter, you are a peach! Know that a little of your time means so much to those who have endless days to fill.

Smile and wave boys. Smile and wave. : )



Cycling! January 5, 2013

Filed under: Uncategorized — parentingcfs @ 7:10 am

The view from the upward side of the roller coaster is so nice. I love it here. Can I stay? Please? Please? Although getting to the top and staying there would be even better!

As you can guess things are still going well here! Summer holiday time and all that so it is the time when things are most likely to be good….because of the weather and relaxed environment. Actually I don’t really know exactly why..just guessing!  However it’s far from guaranteed that our girl can do more at this time, especially after the terrible winter, so we are revelling in this (hopefully not temporary) improvement. (Power of positive thought and all that..from me not the gorgeous girl who is nearly always positive)

The big news is….drum roll please….that after the outdoor Christmas Day we haven’t really looked back. We’ve had a couple of necessary quiet days but she rallies quickly and has left the house more than she has in months.

And….wait for it…she rode a bicycle for two days when we were visiting our favourite holiday island!!!!!!! Like…. AWESOME!!!!! The second day was ridiculously hot and we tried to persuade her to settle for a short ride but no, she wanted to go to a different beach 5kms away, up hills. By the time we got there she was not in great shape. The whole two days we found frequent reasons to stop and insisted on rehydration but this ride really was too much. Anyhow, we lay in the calm, cool shallow sea for an hour and pondered our options. We were a little stuck. 39 degrees celsius and rental bikes. In the end our brave girl decided she could probably do it with her iPod music in her ears… And she did do it, luckily mostly downhill on the way back so lots of coasting (or gliding as she renamed it!)

The next day was a quiet one but no massive least from my point of view. I’m sure it was really important that we prioritised fluid and food the whole time, and had the BP medication and the new herb regime. Without any one of those I suspect it would not have happened. 

Anyhow, here we are 5 days later. Yesterday was a quiet day in, this morning we all went to see some old friends for a couple of hours. It is hot again today and our gorgeous girl has just decided she’ll skip the movie we’re off to see with her beloved big cousins shortly.  So I must rein in my enthusiasm and remember it’s all baby steps. Baby steps forward are just so welcome, I can’t tell you.

Shout out to our lovely friends the Barnies who hosted us this morning. Our girl seems glad she came and we all loved the catch up. Happy gardening and see you at the cricket! x