The grace that entered my life in the form of a little man with huge dark almond eyes that reveals a beauty not of this world.
The grace of two cutest tiny pinky fingers with a teeny crook at the tip of each one and two floppy ears that make me want to cup them with my hands. Not to hide them from the world but just to be able to hold the delight of them.
The grace that ached my heart as I longed for this angel faced boy to smile back at me. Oh, but when he did, he was and is filled so widely and wildly free of a cheekiness that lightens and lifts my each and every day.
The releasing touches of grace as we breathed tears of relief, when we were told after the first eighteen months of his life, that the hole in his heart had healed. It was now as healthy as his big brothers and sisters.
The grace that ached my heart during the many long ticks of time waiting to watch him roll over, to sit up, to crawl, to stand, to walk. To hold a toy, a spoon. To put rings on a hoop, a shape in a sorter, to build a tower of only three blocks. To blow me a kiss. To sign I love you. The long time waiting to hear him say “mama”.
As I watched and waited I saw the sweet hard grace of determination and perseverance. I saw the sweet grace of a heart with a will that never stops trying, never gives up. However narrow the road is, however high the mountain, however big the giant, however small the bead is for that not yet refined pincer grip.
A heart that fights winters of tiredness, weariness, infections and struggles of delay.
Grace keeps him going.
And yet wonderfully, as this boy of mine rides his rainbows of hope, grace showers down, glistening in the sun light of a heart full of experiencing the joy and exploding excitement of each and every battle painstakingly won.
The cheers and whoops and claps of a family united under this abundant umbrella of the grace of our Father. Who has opened up our hearts to this unknown, and if I’m honest, in the beginning unwanted, world through the honey grace of this little man of ours.
Our love for him leads us to new friends we otherwise would never have found. To children in need of love and acceptance, whose path we other wise would not have crossed. To the dusty roads of Africa and it’s children of joy there. To Africa and Anita, our girl, who now has a smile that’s no longer sad. Grace grace grace.
So what now my darling boy? You are three years old and Thomas the tank mad. And as your little beauty of a friend with the blond soft curls say’s, you know all the Makaton signs a little boy should know.
How do we get the world to sign back to you whilst we wait for your understanding to catch up so that the verbal words finally come? How do we get the world to want to sign back to you so that you can be friends?
How do we get the world to be aware and patient with you while you build your skills to build a block tower of ten?
How do we get the world to not settle with “you’re doing well enough”, but nudge you to be the best you can be at, well, at everything?
How do we get the world to see your love for them and that you just want to wrap your arms around them?
To see your enthusiasm for music and dance and of life?
For your mischievousness that makes those who know you laugh from the bottom of our bellies and sometimes makes us stop in our tracks at just how clever you truly are?
How do we get the world to see your eagerness for fun? Like when you squint your eyes tightly shut and pretend we can’t see you, but grin at the same time because you know really we can.
How do we get the world to see that when you are naughty, it is because you are no different than any other three year old child? It’s just it takes you longer to understand why you need to stop.
How do we get the world to realise that your understanding of safety is zero, without them thinking we’re neurotic or you are an inconvenience?
How do we get this world to ask questions, to want to become knowledgeable in their understanding of what Down Syndrome, or any other disability for that matter, means? So that the defenses of their fears are broken down. So that their hearts too may be opened and filled with God’s grace of the differences and the same that He is showing them through you to make us more like Him.
Until that happens, we alongside you, will fight so hard for inclusion, equality, for you to be all you want to be, to achieve all you want to achieve, for you to be loved, for the face of beauty to be challenged and changed. Knowing, my very own brown almond eyed with a heart of love beauty, that everything, everything is grace. Uncomfortable at times, hard at times, but sweet honey dripping grace.
Thank you Jesus for my boy. May his identity be enveloped in you. May there never be one day without him not knowing your love. Thank you for your grace that is Arran.
Arran, when the world taunts you, ignores you, forgets you, misunderstands you, loves you, fights for you, cherishes you, remember, the one who saved you, the one who created you just as you are, spoke through His word, that you Arran, just like each of your brothers and sisters, are differently but equally “fearfully and wonderfully made”.