Additional Needs Parenting: Unpredictable, Impactful, Inspirational

Those of you who regularly follow my blog will know that the past week has been a challenge…  In ‘Prayer – We Don’t Always Get The Answer We Asked For’ last week, I wrote about how that day James had refused to go in to school, with all the disruption that had caused…  Things have been quite unpredictable since but the journey, while impactful, continues to be deeply inspiring!

James did go into school the day after I wrote that blog, ending the school week well, but over the weekend he stubbornly refused to go anywhere, preferring to stay at home relaxing and enjoying the entertainment provided in his den!  His only trip out, on Sunday afternoon, was to one of his favourite places, Pamphill Dairy Farm Shop, to do some shopping including an icing covered gingerbread dinosaur…

The unpredictability around being willing to go to school has continued into the new school week too…  So far it is, Monday – yes! 🙂, Tuesday – no! 😦, Wednesday – yes! 🙂.  Thankfully the school summer holidays start at the end of this week, so not long to go!

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’ 15 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 my blog!), 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 (where we get the Christian celebration of the eucharist from), meaning to be grateful, to feel thankful, to give thanks…  even in the storms of life.

I’ve started on my own journey of chronicling one thousand gifts; I’ve got a long way to go but as I look back over some of what I have written over the past few difficult days, 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!”, “Answered prayers about transition to bed”…. and so on…

Through the impactful disruption of the last few days 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 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!”

Regular readers of this blog will know that one of my favourite worship songs is Cornerstone from Hillsongs, containing as it does these words which have sustained me through many storms…  “Christ alone, Cornerstone, weak made strong in the Saviours love.  Through the storm, He is Lord, Lord of all.”  We journey through the unpredictability, impact, and yes the inspiration, never alone but always with our good Captain at the helm!

So if, like us, you are journeying through unpredictable, difficult, challenging, impactful or disruptive times as an additional needs parent, or as a children’s or youth worker getting alongside someone else’s child, 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 God through them.

Blessings,

Mark
19th July 2017

Image rights:  Mark Arnold, Ann Voskamp (One Thousand Gifts)