
I didnât grow up knowing anyone with Down syndrome. I donât have a brother with Down syndrome or a sister. No aunts with Down syndrome or cousins and, now that Iâm grown up, I donât have a child with Down syndrome, either. But, recently, I wrote a whole book that I call my âlove letter to the Down syndrome community.â
This means the most frequent question I get asked is, âWhy?â Why Down syndrome?
Life often takes us on adventures we never expected. In this case, life brought me to Brittany.
This month, Brittany and I will celebrate our Friendiversary, as she calls it. That is, our friendship anniversary: weâve been friends for six years. Brittany is sassy and playful and creative and she happens to have Down syndrome. The first time we met and we hugged hello, we tease that we knew in that instant we were going to be friends.
Halfway through her 20s, Brittany realized her purpose: to spread love and hope to families that began just like hers, with a baby with Down syndrome. With the support of her family and her community, she launched Brittanyâs Baskets of Hope, a 501(c)3 nonprofit on a mission to help spread that hope by providing welcome baskets, or âbaskets of hope,â to families with new babies with Down syndrome all across the country. Since delivering her first basket of hope in October 2016, she has now sent over 1,100 baskets to families in all 50 states. Sheâs impressive.
Besides getting to be Brittanyâs friend â which entails singing carpool karaoke to Megan Trainor and Bruno Mars songs and dancing to Lizzo â Iâve been blessed to serve on the Board of her nonprofit for the past four years. This has connected me to families across the country and the globe with little bundles of joy with Down syndrome, and in small ways and large, each family has given me a glimpse of their stories. Through each of them, I have been surrounded by love and have seen the power of resilience. Iâve seen their journeys through challenges, grief, uncertainty, medical struggles, faith, joy and, yes, love. Always lots of love.
And so I decided to give a little bit of that love back and write a book that celebrates a community I never expected to find, but that has nourished me nonetheless.
So when people ask me, âWhy Down syndrome?â I tell them that.
But, lately, Iâve also been trying to articulate something I canât quite name when people ask me, âWhy?â
âWe are linked,â I might say in reply. âThis book is for anyone who has ever felt alone or different. I want you to know youâre not alone.â
I think I am trying to say, âI see you.â
But, this weekend, I finally stumbled into grace, the words I was seeking. I was reading Father Gregory Boyleâs âBarking to the Choir,â a book about unconditional love and his work with former gang members. He was talking about the gospel and Jesusâ message: âI will not leave you as orphans.â Father Boyle wrote, âWe are meant to hear in these words a call to seek out the isolated, the rejected, the abandoned. Then we are meant to walk toward them, with open arms, and bring them into the place of belonging. This is [our] essential task.â
And there it was, what I have always felt, the words I was seeking out there in the open: we are meant to spread wide our arms and, in tenderness, invite everyone into belonging.
I donât believe that people with Down syndrome are the rejected or isolated. In fact, thereâs a whole Down syndrome community that has shown me what love really looks like. But I do believe full understanding and inclusion and celebration are still a work in progress. We still donât quite know that the exceptional and the worthy are not just a select few or those at the center, but theyâre everyone, even those sometimes pushed to the margins. We are all worthy.
So, these days, if you ask me, âWhy Down syndrome?â that is what I will tell you: because my arms are open. Because we all deserve to belong. Because of love.
Love is our truest calling.
source https://www.programage.com/news/Why_I_Write_About_Down_Syndrome__Even_Though_No_One_in_My_Family_Has_It__1604451616100041.html
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