UCD 2021 Alex’s Story

UCD 2021: Alex’s story

10 years ago

10 years ago, my husband and I were just married, dreaming of a future filled with family, freedom and fun. We were living in a tiny flat in the centre of the city. We were thinking of trying for a baby.

We felt our lives were pretty full. Our lives were pretty ordinary. We were very privileged.

10 years ago, I had no idea that, in 2011, there were still disorders and disabilities that science cannot explain.

I had no idea it was possible simultaneously to dream for your child’s future and prepare for their death.

10 years ago, unknown to us, an amazing group of families, with the support of Genetic Alliance UK, were founding a group called SWAN UK.

Seven years ago, we joined them. Three weeks before his birth, our second child, Benjamin, was diagnosed with an undiagnosed syndrome – if that’s not a self-contradictory statement! His skull was “too small,” his brain “too smooth.” He was unlikely ever to walk, talk, or feed himself. He might not even sit, roll, or swallow. He would likely suffer from epilepsy. In fact he would probably die at birth. His congenital condition, cause unknown, presumed genetic, possibly hereditary, almost certainly life-limiting, was a syndrome without a name.[1] 

We joined SWAN UK (thank goodness we found SWAN UK) after Benjamin was born because, although a disabled child is a joy, a blessing, a gift, and above all still a child, navigating an ableist world when your child is disabled is exhausting, expensive, stressful and soul-destroying. We joined SWAN UK because we needed support, but couldn’t access most support groups. We joined SWAN UK because there are unique challenges that come with having a disability but no diagnosis: genetic testing, genomic testing, the lack of a prognosis, difficulty getting benefits, difficulty getting charitable funding, difficulty getting travel insurance, difficulty explaining your child’s condition to anyone else, difficulty getting anyone to believe what you know about your child, deciding whether or not to try for another child, blaming yourself for your child’s suffering.

If I’m honest, we joined SWAN UK because at that point we were willing to try anything. We joined SWAN UK because we didn’t fit in anywhere else.

Over the last seven years we have been supported by many wonderful professionals, friends, families and organisations. There are those who helped us access funding for equipment (thank you Kindred); taught us ways to play and communicate (thank you, Cerebral Palsy Scotland); made our many hospital stays that bit more bearable (looking at you, Edinburgh Children’s Hospital Charity); helped us make precious memories as a family (CHAS are an absolute lifeline); and taught us to dream big (In Control Scotland, through the remarkable Partners in Policymaking programme). But among them all, SWAN UK has been my constant. My place to go in the middle of the night when I’m doubting my own sanity. My fountain of knowledge and answerer of stupid practical questions. My source of silly and fantastically dark humour in equal measure. My tribe.

Through the SWAN UK community we found other families like ours. We found friends for life. We found allies who live round the corner and kindred spirits at the other end of these islands. We found friends to share the many good times, and friends to hold us up when there were no words left to say.[2] 

With our extended SWAN UK family alongside us, we celebrated every mini-milestone, gushed over every back-to-school photo, cheered every ‘star of the week’, and packed everything but the kitchen sink for every holiday. We battled for Benjamin’s health, education and social care needs, did crazy things to raise funds, campaigned for a more accessible, equal, inclusive and fair society, and celebrated each other’s victories in all these things. We endured a rocky third pregnancy and celebrated the birth of a second cheeky sister for our son. And two months ago we grieved for our boy, and celebrated his wonderful life.

Benjamin never did walk (he wheeled), talk (he spoke volumes with his eyes), or feed himself (making him much less messy than his sisters). He did sit – on the lap of anyone who would have him for a cuddle –which was any woman in the room (and most men). He did roll, under protest, during therapy sessions. He did swallow and we were grateful to be able to breast – and bottle-feed him for a full 18 months. He did have epilepsy, but it was mercifully well-controlled. He did not die until seven joyful years after his birth.

The doctors were largely right in their predictions. But the picture they painted was so wrong. There is much to celebrate.[3] 

Our beautiful boy, our precious gift, our teacher, our comfort and our inspiration, our swan, is no longer with us, but we remain a swan family. His condition is still undiagnosed (and even if it weren’t, once a SWAN, always a SWAN). So we will always celebrate Undiagnosed Children’s Day, and on this special Undiagnosed Children’s Day on 30 April (and SWAN UK’s tenth birthday year), we’ll happily celebrate and remember all the swan families and children we have been honoured to know. We’ll treasure the friendships that blossomed and remember all those who gained their wings far too soon.

10 years on, our lives are still pretty full. Our lives are still pretty ordinary. We remain immensely privileged: to have had Benjamin in our lives and to share his life with others. We are blessed.

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