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The Down Syndrome Diary: How Shared Heartfelt Stories Created a Global Family
rejoice at finally feeling safe without a Covid sword hanging over, but also a reason to struggle to embrace that new life without her husband, who missed the opportunity of the Covid vaccine by just two months. Maryanne celebrated her fiftieth birthday on 17 May. One she had big plans for with Tommy. She says what helps is that Tommy visits her in her dreams, and when that happens, she always wakes up with a smile on her face. Their extra 21st chromosome may have set them apart from the mainstream population, yet their love, Tommy’s passing, and Maryanne’s grief are no different from anyone else’s. And just like anyone else who has experienced the loss of a loved one due to Covid, life just has to go on for Maryanne, somehow…
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Rest in Peace, Tommy.
The Down Syndrome Diary
By Hayley Newman (UK, blogger, mum of 2, author, speaker, inclusion ambassador at Downs Side Up, linktr.ee/downssideup )
Eight years ago, new mum Jamie Freeman, from Detroit, sent a beautiful leather-bound journal out into the world, to connect with other families with a loved one with Down syndrome. Little did she know that the diary would eventually be turned into a book filled with all the stories collected on its travels: The Down Syndrome Diary.
Like a message in a bottle, sent out on the crest of a wave to places unknown, new mum Jamie Freeman, from Detroit, understood that the beautiful leatherbound Down Syndrome Diary she had etched her innermost feelings into was now at the mercy of the tides. Or, more accurately, the families who were to become its temporary custodians and the international postal services who carried it between them.
What was clear, though, was just how much it meant to each and every person who held it in their hands and how seriously they took marking its fresh pages with words that would make a difference to others.
The stories were told in a traditional fashion, one person opening their heart to another in a handwritten piece. The book became so unique and irreplaceable and the content so important as it slowly filled with personal stories, mementoes, photographs, and even tear stains, that it literally took on a life of its own. So, when the doorbell rang at my home three years after the diary began its pilgrimage, I breathed a physical sigh of relief that it was safe as the post lady placed it in my hand. It was an ordinary enough looking parcel, but one sent with love and filled with messages and gifts of self-published books from the previous writers, photographer Oliver Hellowell, who has Down syndrome, and his mum Wendy. As each diarist before me, I too felt the magnitude of wondering what to write. So I lived with the book on my desk for many days, letting the ideas percolate, just absorbing its energy before I dared put pen to paper. What struck me was that everything I had to say had been said before. The wonderfully articulated tales of hope, unconditional love, initial shock, extreme pride, worry, challenges, joys, gratitude and everything in between were already laid out in ink. Recounted stories of birth, heart surgery, sibling love, starting school, learning new skills. It was all there. We all had so very much in common. I smiled too at the realisation that having a child with Down syndrome seems to make us parents so driven, for so many families had started charities, published books, shouted from various media outlets about how fabulous their lives were. And despite living across four countries and two continents, the threads that united us were far stronger than our differences. In total, the diary would pass through twenty-six families and contain four vital contributions from people who have Down syndrome themselves. So many of the young people with Down syndrome are trailblazers in their own right: models, artists, photographers, and actors. But by far, their most important achievement is as teachers of life lessons to those of us without an additional chromosome. These young people are resilient overcomers from whom we have much to learn, and that shone from the pages. The book also encompasses the experienced and wise words of seasoned parents who have beaten a clear path ahead for those of us who follow, alongside new parents’ thoughts, written while still foggy-headed from a mix of sleep deprivation and warm baby love. Eight years on and the diary is available to buy in a full-colour coffee-table format, and proceeds are going towards copies that will be gifted to new parents and practitioners. Jamie Freeman, from all of us, whether contributors or readers, whatever our personal situation and wherever we find ourselves in life, we thank you for bringing us and our words together…
