A friend posted this picture today. I had seen it before, I think I may have even posted it before with a different visual, but this day it hit me afresh.
You see, it had followed a post that reminded me that 'on this day' 7 years ago, we sold our house in Kyrgyzstan. It was the end of what we had thought was our life's calling. The end of our dreams and hopes and the closing of a chapter which was so painful to close.
Any transition is hard, unplanned transition is even harder. During this time, there are many going through unplanned transition. Some small ones - having to teach our own children (!), others bigger - loss of jobs and finances and others still, the biggest that can be faced - watching loved ones go from death to life. Loss and grief are hard at any level. Some we can navigate, compartmentalise and work our way through, others blind side us when we least expect it. We get over the initial shock, work through the grief cycle and think we are through the other side, creating a new normal, and suddenly a smell, a sight, a sound takes us back to a moment we thought we had moved through.
Seven years on and I thought I was through it! I was surprised by the wave of emotion that swept over me this morning. The friends I miss, the sounds of the bazaar, the light dappled through the leaves of the walnut tree in the garden. Hope is rising again, things are moving forward, life has purpose. The illness that brought us back is still present - a constant reminder and burden to carry on a daily basis, but the raw pain is gone. Instead I remember with gratitude the time we had in Central Asia, the people we met and worked with, the friendships that still remain, the lives that were changed. Would I work overseas again? In a heartbeat. But part of the moving forward, part of the letting go of the past and grabbing hold of the future is grabbing the future that is here and now. So I will grab that, and find joy in this future, dig for it if I have to.
Letting go of the past is a choice, sometimes its a hard choice, and sometimes it takes years to make that choice. And for those of you that are only just experiencing loss during this time; don't hurry through that journey, there is learning to be done there, in the rawness, in the emotion and in the grief. But when the time is right, make that choice, let go and grab the future.
Well, its been a while since I wrote anything and life has been a blur. Although we did see a some lessening of seizures over the time of prayer and fasting last June, sadly, they increased with vengeance and are now at an average of 3 Tonic Clonics a day.
And we are, of course, in lock-down at the moment. So, what does that mean for us? Well, firstly, it means that the hemispherotomy operation that was due to take place in March or April has been postponed. We don't know now, when that is likely to happen. As I write, there are still hundreds of deaths a day in the UK and Birmingham (where the operation was to take place) is the worst affected area outside London. Disappointment is a tough emotion. Especially for someone with Autism that has a fixed mindset.
Immi has actually coped admirably, but I can see a pervading sadness over her. She is finding it harder and harder to get up each day. In part, this is because, presently, the majority of her seizures are occurring at night and so she is exhausted. Partly, because she has always been and night owl and she is defaulting back to her natural body clock I think which would be as a late sleeper and late riser (like her Dad!) and partly, because she is struggling to find things to look forward to and to motivate her to get up. Don't get me wrong, school as sending home great work, and we have taken to doing one bit of 'brain work' maths, reading or writing a day (which is a huge effort) and one bit of 'fun work' baking, PE, art etc. But this is just not doing it for her. I created a chart that she could use to earn virtual pounds. She got more money the earlier (after 7am!) that she rose, £1.50 if she got up between 7 and 8, £1.00 if between 8 and 8.30am and 50p if it was between 8.30 and 9.30. nothing after that!! And then she could earn for different things, getting dressed, cleaning teeth (that was a high earner as she hates it!) and jobs like laying the table, as well as her school work. She was motivated for a few days as she worked towards enough to rent 'Trolls World Tour' (What joy!) But now, that is done and she is struggling to find motivation and joy.
Getting up in our house has become a tension point (Yesterday I was called the 'Worst beast in the world!') but I do not want to leave her to wallow all day.
I don't have a magic wand for her, I can't take the seizures away. So I will continue to do what I can...
So what can I do?
1. Look after my own mental health. I cannot bolster her and continue to bring joy to her if I cannot find it myself. In a plane, during the safety talk, they always tell you to put your oxygen mask on before helping anyone else. I feel this time is a bit like that. If I am low, I cannot help her. So I need to make sure I do things that will feed my soul in order to feed hers. Be kind to yourself, do some art, listen to some music, read some of that novel, have a glass of wine (just don't start to rely on it!! 😉), call a friend, eat some chocolate, have a bath - whatever it is for you that feeds your soul.
2. Practice an attitude of gratitude and thankfulness. It's easy to see the darkness, to focus on the difficulties and the hard things. Maybe its my personality, maybe its my Britishness (!) but I find it much easier to be a pessimist and to see the glass half empty. I need to consciously force myself to change my thought patterns. In the Bible, Paul describes this as 'being transformed by the renewing of your mind' (Rom 12:2). It is a real tangible practice and gets easier the more you do it. Many use a journal and start by writing down one thing each day that they are thankful for. It can be hard at first, but as you practise it becomes easier over time and then you are able to recognise and catch yourself when you are defaulting back into the negative spiral. Katherine Hill (Care for the Family Director) says that as parents we are 'responsible for the atmosphere' in our families. We cannot create a positive atmosphere if we are in a negative thought pattern.
3. Create opportunities for creativity. Immi may not chose to take part, but on the other hand, she may! So, I will continue creating creative opportunites. We, at Breathe Communities, believe that creativity is really important. It is something of God that is reflected in us, but more than that it releases something in us that doesn't have to go through the 'higher order, reasoning' parts of our brain. When we create, or appreciate another's creativity, it touches us in our limbic system, it gets straight to our emotions and produces loads of 'happy hormones' (oxytocin and dopamine) in us. This helps start to bring us to a positive place and force that spiral of thinking in an upward trajectory instead of downwards.
4. Work out the priorities. So, I'm faced with a teen, with special needs, that will not get up, will not do anything. It is highly frustrating. I could completely lose it (I have tried this tactic - it tends to make things worse) or I can work out the priorities. For me, right now, the priorities are 'keep her alive!' Seriously, I need to get medication in her at a set time. I need her to drink enough, and eat enough. I need to be able to keep her safe seizures wise. I need her to be clean and I need her to not plummet psychologically. If those things are dealt with she is much more likely to engage in anything else I offer her anyway, so these have to be my priority. If these are done, I'm going to count it as a good day and academic work is a bonus!
5. Create choices. Along with the above, as with most teens, if I tell her to do something, the opposite is going to happen. I now try to present everything as a choice. Its generally a choice of would you like A or B? or Which would you like to do first: A or B? Or, if possibly, like the earning chart I mentioned above, a wider choice, like a menu to choose from. This tends to take some of the battling away.
6. Pray - When all else fails - pray. I do pray regularly, but on those days where it is all going horribly wrong - PRAY. Am I doing it for her? Am I doing it for me? Am I doing it so I don't say or do something I later regret? I don't really know. But what I do know, is that it changes things. it changes the atmosphere. In me. In her. In our home. Sometimes the biggest battle is in getting to this point. I'm so angry, so raging, that I don't WANT to pray for her. Its very hard to pray for someone you are angry with. But if I can get past that. I calms me, it calms everything.
7. Be kind, be patient, be loving. These are some of what the Bible calls the 'Fruit of the Spirit', but if you are a follower of Jesus or not, we all need these and all need to utilise these! They sound so simple, but sometimes, they are oh so hard! When she has completely riled me, they are hard to dig for. But, as the parent, we do need to dig for them. Dig deep! I know that a change is much more likely to come in attitude if I demonstrate and use these things. If I rant and rave the heels just dig in deeper, but if I relate and show understanding saying things like "Wow, it looks like you have had a really hard night, I can see you are really struggling this morning" Even in the middle of her storm, it cuts through in a way that anger never can. Meet anger with love and I am much more likely to win the battle.
8. Praise. Find those moments to praise all the family members. Look for the good. The tiny helps that someone might do. If someone throws a wrapper in the bin - big them up, go over the top. They are much more likely to do it again. A bit like practising gratitude, this is not something I am good at. I have to make a conscious effort. I have worked with other nationalities that are soooo much better at this, it just seems to come effortlessly. But we need to learn to be generous with our praise. It doesn't cost us anything, but can change everything.
So, as you read these, please don't read them thinking, wow, she sounds like she's got it sussed. What's probably worse is that I know what I should do and still often don't do it. So, please take this with me and lets try together!
K x
(PS and let me know if you have some successes!)
