As regular readers will know, my 14-year-old daughter has been chronically ill with ME/CFS for over a year now. And as you may also know, for several years now I have been the head gardener at my church – and I have loved this work. However, things with us are still so very difficult, and the Dafter so very poorly, that I’m going to be letting go of two things that have until now been very important to me, namely working in the church garden, and my job.
South Holburn church garden, October 2012, Aberdeen
I’ve done very, very little in the church garden over the last few months. A team of helpers has materialised, and the vast majority of the work that’s been done has been without me. As you see above, the results are good! (I did give a hand with the planting.)
I’ve already cut back my hours at work (Michael looks after the Dafter when I’m at work), and after Christmas I will be taking six months’ unpaid leave. I think it’s very unlikely I will be able to return. However, although I’m a bit sad about both these changes, at this point I’m very relieved to be able to devote myself solely to looking after the Dafter – and myself. It’s not that I’m a martyr, or that I will be with her every single minute of every day. It just means that the very small amounts of time when I can get away, I’ll really be able to relax and do things for myself. As my job entails helping people, and doing a lot of listening, it is very tiring and I come home just beat these days.
Here are the shadows of the Dafter and myself, looking out across the North Sea at Aberdeen beach recently:
Me and the Dafter: our shadows on Aberdeen beach. October 2012.
She is a fantastic young person in a hugely difficult situation. She’s very aware of the toll that caring for her takes on the two of us, and she’s always appreciative. As I wrote here, as a parent-caregiver it’s important to make sure we can replenish our diminished resources. There is so little margin now that I must prioritise myself over nearly everything else, if that makes sense! Also, I need to be obedient enough to do the right thing, as I wrote here.
I was trying to add another photo to this post – the one of the rainbow that the Dafter and I were photographing in the picture above. For some reason, WordPress isn’t allowing me to upload more photos at the moment, so you’ll have to imagine it. Maybe it’s read Arctic Mum’s very funny and thought-provoking post about “Happiness Bloggers” and it’s put a stop to more rainbows! Well, I try to be honest on this blog (without wallowing), and I do sincerely believe that life is good, overall. And I’m very grateful for the many blessings we enjoy – our family being at the top of the list. I’m looking forward to letting go of these two commitments, and realigning myself better with what is always foremost in my thoughts and my heart.
Bless you and your family – I have a newly acquired friend with ME, so am just learing about the condition. Thoughts are with you very often xx (though they be through the ether! xx)
By: amadarling on October 18, 2012
at 10:09 pm
Thoughts and prayers with you all through your time of readjustment xo
By: Laura on October 18, 2012
at 11:21 pm
I have so hoped to hear of an improvement in your daughter’s health. Modern medicine doesn’t seem to have any miracles where ME/CF or related conditions are concerned.
You are making sensible choices in a difficult situation. I hope there will be new joys and encouraging times as you settle into a new routine.
By: mimacat on October 18, 2012
at 11:43 pm
Those seem like very big changes to me; made in your usual spirit of optimism, and yet clearly not without regret. From my own observation, the mother-daughter relationship can be one of the most precious things in life and I suspect that these changes will be something you look back on as significantly important and correct without doubt.
By: oldblack on October 18, 2012
at 11:55 pm
I do often think about you and was so sorry to hear that your daughter is still struggling. What a miserable condition it can be – but throughout it all you are united as a loving family and what always comes across on your blog is the lovely relationship you have with ‘the dafter’ and her sense of humour! I’m sure you will both benefit by having more time together.
By: ann on October 19, 2012
at 12:19 am
That’s what it is all about. Making sacrifices for your family and your own sanity sometimes has to take priority. It sounds like you are feeling very positive about these choices and that is what matters most. My thoughts and prayers for you and your family as you move forward on this journey. xx
By: Karen on October 19, 2012
at 12:37 am
Its not easy to make difficult changes but only you know what the right one is
I think putting your daughter at the top of the list, is saying a lot about you !! You’re a wonderful mother and a great person !
By: Carin on October 19, 2012
at 1:42 am
Sometimes it’s good to re-assess our lives and figure out if something needs to change. I think what you are doing seems entirely sensible to me and I hope it gives you rest and time to do some things you like to do. I’m sorry you had to give up the gardening but maybe there will be a team of people to step in and accomplish what you have been so willing to do. I wish you and your family all the very best as you make these adjustments. May you have much joy during this new season.
By: ajb47 on October 19, 2012
at 3:21 am
Christine – you are doing the right thing – no need to feel guilty or unsure. As a mother, I know that my children mean more to me than anything or anybody else. At the moment I am really struggling with full-time working – it breaks my heart that I’m not here to see them off to school in the mornings or that I don’t really look after the home or cook much during term-time. Thankyou for alerting me to ‘Arctic Mum’ – I wholly endorse what she says about happiness blogs. Thinking of you both and sending out the positive vibes, Judy.
By: Judy Hamid on October 19, 2012
at 6:54 am
You always make the best of your situation, Christine, and the bond you have with the Dafter is something very special. When you get down to the bare bones of it, the people we love are the most important things in our lives, and you do have to look after yourself and your own health and well being in order to be of any use to others. It is a shame you’re giving up – at least for the moment – some things that you’ve been enjoying in life, but I think that this is a part of life for most people at some stage or another. You’ve made a great contribution to the church garden and your job, and you can be pleased about that, and now you’re making an even greater contribution to the life of your lovely daughter.
By: tearoomdelights on October 19, 2012
at 8:26 am
You’ve had to make some tough choices, Christine, but no sacrifice is too big where our children are concerned, is it? This will enable you to have ‘quality’ time with the dafter, and time to recharge your own batteries. As always, I wish you and yours well.
By: Martin on October 19, 2012
at 8:35 am
How sad for you having to give up two of the things you so enjoy. I understand why you are doing it but always remember YOU are also a very important part of this world, so make sure you compensate by doing other things you enjoy even if you can only do it in small doses.
Sending warm hugs to you all xx
By: madewithloops on October 19, 2012
at 9:34 am
Love and prayers for you all. I know from experience the difficulties of dealing with this wretched condition. xxxx
By: Barbara on October 19, 2012
at 10:24 am
You are one very wise woman. May God grant you the peace and assurance you need during this time of change. Much love, xxx
By: Tina on October 19, 2012
at 10:38 am
You are in my thoughts often!
By: Dorit on October 19, 2012
at 10:55 am
Hugs. I am glad you are able to do this and spend more time with your darling dafter. I hope they can figure out how to help her have a normal life soon. Hugs.
By: Marjorie on October 19, 2012
at 12:04 pm
Hi, that sounds like a good decision you’ve made. When you have a demanding home situation you must not be drained at work too. I’ve mentioned before how my friend got well from ME the past year, after being ill for around five years: she gets better and better. She’s started work again part time (she’s a doctor), put on weight and out there again. There’s hope! Oh, and we do need happiness blogging as well!! A balance, or just like life really is: ups and downs.
By: Mali on October 19, 2012
at 12:31 pm
I’m so sorry to hear your daughter is still struggling with ME/CFS; how sad that there is no known cure for it. I sure hope you will find a good treatment for your daughter and that it will help to ease all the symptoms. Take care.
By: Kia on October 19, 2012
at 3:29 pm
Realignment is the right term, I think, rather than giving up.
By: Linda on October 20, 2012
at 7:13 am
Life goes through many changes, one has to adjust with what happens. I think when you are young you have this written in stone concept of how your future life is going to be, but reality is life can throw you some very hard curve balls and it’s how you react, cope, adjust, move on with life that is a test of your character.
Two great changes in your life, but totally for the right reasons, is a tribute to you and that time together with your daughter will be precious to you. We move through life at too fast a pace, so the time this will give you together and for yourself will be healing.
Thinking of you.
Christy
Lil Bit Brit
By: Christy - Lil Bit Brit on October 20, 2012
at 8:26 am
You’ve done it! You sound as if you have come to terms with what must have been a difficult decision. Here’s hoping everything gets easier from now on
By: Scruffybadger on October 20, 2012
at 9:26 am
Ok. I’m picturing rainbows and off to read about happiness bloggers. Back soon.
By: Relyn on October 20, 2012
at 2:32 pm
Christine, you’ve received so much encouragement and support in your comments here, it almost seems redundant to add mine! How fortunate you are to have such a wonderful network of online friends. I, too, feel like you are making the best decision. No longer will you feel as conflicted as you have felt: wanting, needing to be home, but also pulled by work responsibilities. Your focus will be less fractured, and that is a blessing indeed.
By: Ellen, the Bluestocking Belle on October 23, 2012
at 2:19 am
I think you are making a very wise decision. One year ago my daughter was struck by a car and I too took some time off while she healed. They may not tell you, but they appreciate what you are doing for them, it makes the healing more bearable. You are a great mother and she knows it! Hugs, Diane.
By: Diane on October 27, 2012
at 1:42 pm
Christine, I’ve thought of you and your precious family so often these past few months during my recent life changes. I know your decision might not have been an easy one but, I think, it was it is a very wise one. This will give you something very valuable – time. Time with your daughter and husband…and for yourself. I hope the next few months bring renewed strength and energy for both your precious dafter and you!
By: Dianne McGregor Campbell on October 27, 2012
at 3:46 pm
what a loving decision you’ve made…for all concerned. Hoping that this time will be sweet with memories and ever deepening love with you and your amazing daughter. I’ll continue to pray strength, wisdom and peace for all of you and of course, healing for the dafter. Hugs to you…
By: Lisa Q on October 28, 2012
at 1:12 pm