A few weeks ago E shared his heart with a plea. So many of you either could relate to his words or cheered him on with the encouragement that change is hopeful. We are so grateful!
This month, March 21st, is World Down Syndrome Day. So raising awareness and changing perspectives are fresh in our minds.
We have been blessed to have a couple of days recently that help us to keep running this race and to know we are not alone. Days that are a lot sweeter than usual. In fact days that are celebratory cartwheel worthy!
We met with the main medical and educational professionals who oversee Arran within his Educational and Health Care Plan (EHCP).
Let me tell you that all the days of fighting hard for Arran to be given support for his needs, to be accepted, days of praying for individuals, some in the church and society, to be captured to want to invest into our boy and so many like him.
That all the sleep deprived nights and the coffee fuelled days, because Arran is full of colds therefore can’t breath well, or gets up many times in need of assurance that we are there due to the unpredictable stays in hospital and spending hours away from us at school.
Days of observing looks and whispers- please come and ask us questions instead…
Days of working hard to make this world be a home for our boy and so many others that don’t fit into a box. Really though, how many do? More than you know just manage to fake it or learn to comply.
ALL of this, every bit of it is worth the joy that literally overwhelms as it pours out when we sit in a room and hear all that is being done. The “rules” that are being broken, the thinking outside the box, the stopping and breathing and “how do we make this work?” rather than “we can’t”. All the enthusiasm as individuals who have taken the time to really get to know this little man of ours and spill over with glee at him and with this community that he has been enveloped into. All who can see clearly that he is clever and bright and caring and sensitive and funny. All who sit beside him and belly laugh with him.
ALL the cheering him on and the believing he can do, even if it takes so much longer.
ALL the smiles and love and open arms with open hands to learn with him.
You are the ones who blow us away and leave us standing in awe.
Then today we sat in a school assembly and watched every reception aged child speak out with confidence and delight.
And right there in the thick of it was Arran. Bold, brave, self assured. He took a glance towards us, then out to everyone else as he paused and was allowed time for his mind and mouth to catch up with each other. His face determined the lyrics “I’m not afraid to be seen, I make no apologies, this is me”. Cheesy? Maybe, I don’t care. It really did spill out from him.
Then clearly and courageously he delivered his scripted given words brilliantly!
And we are undone!
Arran knows this is a place of safety, acceptance, of love. And so he thrives.
To all who are Arran’s cheerleaders. To all who work so hard at ensuring his place at the table and making sure he has every opportunity to taste and experience the banquet of life.
That includes also those of you outside of this setting, far and wide who are woven by heaven’s thread into Arran’s close knit community.
Thank you thank you thank you and a thousand times thank you.
You are God’s grace over us to show us that even on the toughest days when living life with additional needs is so heartbreakingly hard, our boy is beautiful and valuable and his worth is seen and fought for by those beyond us his immediate family.
We celebrate him, we celebrate you.
And this we treasure in our hearts and will pull strength from on those just a little tougher than usual days.