For those of us well versed in all things Down’s syndrome related, we are likely very familiar with the poem ‘Welcome to Holland’ (You can read about it here if you’ve not come across it).
Perhaps it was handed to us as new parents around the birth of our baby; a child born carrying an additional chromosome. Or perhaps we stumbled across it as we trawled the internet searching for answers to allay new found fears and uncertainties in those early days of parenthood.
It’s a poem that divides opinion in our community, but this isn’t a post about its virtues or its vices. If anything, I’m Team Italy…mostly because of my family connections with a country that has long had my heart for many decades. So, Welcome to Holland did little for me when I was introduced to it some 14 years ago, but it still has its place for others, I cannot deny.
In reality, neither my experiences of the Italian way of life, or my understanding of how the Dutch operate bear much resemblance to where and how I actually live, as the parent of a teen with Down’s syndrome and complex needs.
Mamma Mia!
The tulips round my way are long past their best.
No. Instead, I find myself residing here, in Suburbia, living at Wit’s End. Brought here on the Sleepless Night (after night) Bus, without it seems, a return ticket. Hopping on and off along the way to search for answers to this month’s health dilemmas. No, I’m wrong…..searching first for an appointment to look for answers to this month’s health dilemmas. Trying doors that say “Welcome” or “Open” only to find them cruelly locked from inside. I think, on occasion, I may have imagined the sound of laughter from within.
And so here I am, living at Wit’s End. Carrying little else but the complex needs of my disabled child. Bags still hopefully packed with my dreams for her life. For our lives.
Yet it’s here, not in Holland or Italy, that I find, in fact, I’m not alone. If I thought the centuries old, cobbled back alleyways of my beloved Sorrento were crowded with fellow travellers, it’s nothing to this place. It’s not very Instagrammable though, this Wit’s End. I’ll give you that.
But it’s here we gather. Each bringing our own stories of how we got here, of who would not listen to us, of who dismissed our fears or rubbished our requests for help. Telling each other stories of how many times our loved ones (and us as care givers) were failed, ignored, mistreated, maligned.
You would be forgiven for thinking that Wit’s End is the most depressing place on earth.
And yet it is here I find my community. I find those who reached this destination long before I did, and are ready to welcome me into their homes, to explore their hive-minds, share their lives filled empathy, understanding, compassion, humour and so much more. Here I find, almost without fail, someone who will ask me “Have you thought about this…?” Or “What about trying this, it worked for us.”
It’s here, in the village of Wit’s End, I’ve found people who want to know and understand my child, and me. I’ve found Complex Carer Nurses, I’ve found parents of children with Down’s syndrome and or other conditions and complex needs. I’ve found other Wit’s Enders ready to make me laugh and not take myself so seriously. Quick to bring perspective, a joke, a slice of cake and a cup of coffee. There is, I’ve found, an end- less supply of Wit to be found here and I am eternally thankful for it. Heck, in my neck of the woods there is even our own Farm …a place with those ready to share our load and give us respite from our travels!
One of the most beautiful things I found about the Italian way of life, aside from the art, the architecture, the scenery, the beautiful weather, the food…..I could go on……is how much they know each other and are known by each other. The sense of community there, I’ve always felt, is to be envied by us more insular Brits. But perhaps my beloved Italian culture is closer to my own experiences than I think.
Being known and heard is everything when you are a carer to a child (young or old) with complex needs and disabilities. I may have been driven on many occasions to Wit’s End by circumstances and by not being seen or known. Yet when each time I arrive, without fail, I find friendship, laughter, hope and comfort that I am not alone.
Welcome.
Downright Joy 