On Mother’s Day 2001 Henny Beaumont gave birth to her third child. For the first four hours, her baby seemed no different from her two other little girls.
When the registrar told Henny and her husband that their daughter might have Down’s Syndrome, she thought that her life was over. How would she be able to look after this baby, who might die, and manage her other two children at the same time? How could this weak little baby, who needed so much more from Henny than her other two children, provoke such feelings of hatred and resentment? And how would she learn to love her? If she can’t trust her own reactions to Beth, how could she expect other people to overcome their prejudices and ignorance about her condition?
Hole in the Heart is a moving, funny, ironic and refreshingly honest look at living with a child who has special needs. Henny’s remarkable journey speaks not only to parents who have had a similar experience and the medical and care professionals who try to help them, but to every one of us who feels anxiety about our children – wondering whether they are achieving enough, whether we do enough for them, and whether we love them enough.
As the PE teacher asks: ‘Who’s really got the special needs here?’
Foreword
1 September 2016Hole in the Heart: Bringing Up Beth, part of Penn State’s Graphic Medicine series, is artist Henny Beaumont’s brutally honest, and ultimately uplifting, account of raising a daughter with Down syndrome.
“Hole in the heart” refers to a common heart abnormality in children with Down syndrome, one which Beth, Beaumont’s daughter, has surgery to correct. But the title also refers to the battle for Beaumont and her husband to truly understand and embrace their daughter as she is; from the beginning, they often attempt to ignore or work around Beth’s limited abilities, while experiencing a gamut of emotions: guilt and sadness, hope and frustration, and, eventually, acceptance and love.
Beaumont has an MA in fine art and printmaking, and she transitions that experience to sequential art particularly effectively. The narrative flows easily, and when Beaumont chooses to slow it down, the results are gut-wrenching, as with an imaginary “visit” from Beaumont’s 15-years-older self, as the elder woman tries to impart perspective and patience to the younger one. The facial expressions of Beaumont’s characters show everything from sympathy to embarrassment to condescension, as Beaumont and her husband struggle to make good choices for Beth regarding schools, activities, and friends.
Hole in the Heart is a deeply affecting graphic novel that will certainly light a path, if not the only path, for other parents of children with Down syndrome. But it might be even more important for those with no experience of Down syndrome, to help gain an understanding of how the genetic disorder affects not just the child, but the child’s entire family. No matter the audience, the book’s message is universal.
