Those of you who have read other blog posts of mine on Firefly will know that James, our 16-year-old Autistic son, is currently finding it hard to leave the house, with all the disruption that causes around school, work, socialising etc… Things remain quite unpredictable, but the journey, while impactful, continues to be deeply inspiring!
James not going into school means that one of us needs to stay at home with him as he is unsafe to be left alone.
Juggling work and home commitments is proving challenging, as we find ourselves living out the old Chinese curse quoted by President John F. Kennedy over 50 years ago; “May you live in interesting times”! (Never thought I’d be quoting Kennedy in a blog!)
So where does all of this unpredictability leave us?
How is it impacting us and in what ways are we responding to this positively?
Well, here’s how!
We continue to learn, as we have learned all through James’ 16 years of life so far, that impact and inspiration are two sides of the same coin…
Nietzsche was right when he said “That which does not kill us, makes us stronger” (never thought I’d be quoting Nietzsche in a blog either!), but I would add that in the case of additional needs parenting it makes us better parents too…
Even at the end of a torrid day, a day where things have all fallen apart, all the plans we made for it lie in tatters, and we’ve just about done with apologising to everyone, it is still possible to count our blessings… Nobody died and we’re all in one piece… that might in itself be an achievement worth celebrating some days!
I’ve just read ‘One Thousand Gifts’ by Ann Voskamp, where she shares how she has found joy each day in the midst of so much that is difficult; to chronicle these gifts, simply writing two or three down a day in a book.
She uses an ancient Greek word, eucharisteo, meaning to be grateful, to feel thankful, to give thanks… even in the storms of life.
I’ve just completed my own journey of chronicling one thousand gifts; and as I look back over some of what I have written over the past few difficult days, weeks and months, I can see joy in the midst of so much that has been difficult… “Time spent doing jigsaw puzzles with James”, “Learning patience as I help James to cope with his day, and enjoying the sound of his laughter!”, “An easy transition to bed” …. and so on…
Through the impactful disruption of the last few months in particular, there have been inspirational moments that have brought joy to us all, and that have taught us much about ourselves.
James still has his struggles, but we are learning patience, deepening even further in our compassion and love, seeing into his world ever more clearly, and helping him to trust us even more.
Realising that if our day gets turned upside down, it’s not the end of the world and there is still much to celebrate… “…enjoying the sound of his laughter!”
We do not journey alone, but with family and friends whose love and presence supports us; maybe you also have a faith, I know mine has sustained me through many storms…
We journey through the unpredictability, impact, and yes, the inspiration, never alone but always with those who care for us; with them joining us at the helm, helping us to navigate the way, or maybe just keeping the engine going!
So, if, like us, you are journeying through unpredictable, difficult, challenging, impactful or disruptive times as an additional needs parent, seek out the inspiration, seek out the things to give thanks for… eucharisteo… and find joy, peace, inspiration and a drawing closer both to your child and to those who care for you, through them.
2nd August 2018
Image rights: Mark Arnold (photo of James)