THE POWER OF A sister’s love
Felicity Blain, 38, has always had a special bond with her sister Helen, who has Down’s syndrome. So when Helen hit a crisis, the busy working mum opened up her family home, and her heart
‘The car stereo was blasting out Take That’s Greatest Day and, sitting in the back, my children and sister were singing their hearts out. As I heard my enthusiastic family choir join in with the lyrics, “Let’s make a new start, the future is ours to find,” I blinked away the tears. It was as if the song had been written for us. Months earlier, my husband, Simon,
and I had brought my older sister,
Helen, to live with us and our four girls. Now this was our “new start,” and it meant so much to all of us…
ONE OUT OF EVERY 1,000 BABIES BORN WILL HAVE DOWN’S SYNDROME
FAMILY SUPPORT
When Helen moved in with us in September 2017, many people questioned what I was doing. Helen was then 38 and Simon and I already had three young daughters and another on the way. We also only
had a three-bedroom terraced house, so space was a challenge. Even my parents, Jacqueline and David, were worried about our decision.
But the reality was that Helen was desperately unhappy in the residential unit where she lived. She had Down’s syndrome and her behaviour had recently been challenging. I knew what she needed was the love and support of family. To me, her staying in care was no longer an option I could live with.
Eighteen months apart in age, we’d always been incredibly close. As a child, I never slept through the night until Helen moved into my room when I was three. The comfort was mutual. If I ever had a bad dream, I just got into her bed and slept with her arms around me. Helen still gives great cuddles.
I have two younger sisters, Clare and Hannah, but it was Helen and I who were thick as thieves. When we got stares or comments on the bus, I suppose because Helen looked “different”, I just stared right back. It didn’t bother me at all, although it did Helen. When I later learned to drive and would take her as my passenger, she’d say, “I’m so glad we don’t have to go on the bus any more.” She hated people making her feel different and, for a long time, she hated having Down’s syndrome.
Mum and Dad had been given the diagnosis within 24 hours of Helen’s delivery. Mum, who was just 28 at the time, would tell us how a consultant had said, “Don’t worry. Just don’t feed her and she’ll die.” She and Dad had been horrified, vowing to give their baby all the love and support possible and, in turn, Helen proved everyone wrong, learning to walk, talk, read and write. She thrived at her special needs school and, aged nine, found a passion in horse riding with the Riding for the Disabled Association. Her confidence flourished.
At home, she was just my sister. I admired her passion for football and her commitment to TV soap operas. We shared a love of music – both huge fans of Take That – and experienced the same teenage heartbreak when they split (Robbie leaving the band was a big deal in our house in 1995!). I didn’t see her Down’s syndrome, only the tomboy who could, and still can, be as stubborn as an ox. But our special bond meant I would often be able to coax her into doing what no one else could get her to do.
When I was 18 I went to university. It was hard leaving Helen but, at the same time, she went to live in a residential unit in Somerset. Our parents had worried about letting her go but Helen proudly told everyone, “Felicity’s at university and I’m at college.” In her eyes we were the same and she wanted to be independent, too.
In my mid-20s, I met my husband, Simon. He was brilliant with Helen from the moment she linked arms with him at a crowded Christmas market. The two of them talked football non-stop. When it was time to leave, Helen announced, “I’d really like to be a bridesmaid!” Luckily, Simon has a great sense of humour – and he thought it was a good idea, too!
Unfortunately, at this happiest time in my own life, things were unravelling for Helen. A move from the residential unit into more independent supported living went disastrously wrong. She had a breakdown and became gripped by anxiety, making her demanding and difficult to handle. She wouldn’t be left alone and her old stubbornness escalated. When she moved back to live with my parents temporarily, they found they were barely even able to leave the house.
PERFECT PRESENT
There were still moments of happiness. When Simon and I married in 2009, Helen walked up the aisle ahead of me in a beautiful strapless dress, proudly holding her bouquet. She sat beside me at the top table and gave a speech to all the guests about her new brother-in-law. Take That’s Greatest Day became our
‘In Helen’s eyes we were the same, and she was proud to be independent, too’
‘Helen tells everyone she has a new life here, and the transformation is huge’
unofficial wedding song and Helen danced all night. People saw her in a new light and it was the perfect wedding present to me.
Helen had moved back into residential care but things were not improving. She was diagnosed with an anxiety disorder and the staff were finding it increasingly hard to cope with her.
I visited when I could but our lives were going in very different directions. My eldest daughter, Grace, was born in 2011, followed by Bethan
18 months later, and I was also completing training to become a GP. Though Helen was never far from my thoughts, I was in Manchester, more than
200 miles away from her in Somerset, and with two toddlers to look after I could only do so much.
MAKING THE MOVE
In October 2015, while my parents were on holiday, I was called on to help with Helen. That’s when I realised how her behaviour was so much better when she was with family. I vowed to visit her more, quitting my GP position and becoming self-employed. Our third daughter, Eve, was born in March 2015 and Simon and I would head to see Helen with all three girls in tow.
Helen also came to stay with us, and I saw how being with us at home instantly made her happier and more chatty. It convinced Simon (the most amazing man in the world!) and I that we needed to offer Helen a home.
So she moved in. My older three girls moved into one bedroom so Helen could have her own room and we found routines and a way of living that worked for everyone. We also had to tackle the anxiety and distressing panic attacks that were casting such a shadow over Helen’s life. Even with my experience as a mum and a doctor, there were times when I felt overwhelmed.
The answer lay partly in horse riding. I remembered how much she’d loved it as a child and found a local Riding for the Disabled Association. On the way to one of her first classes, Helen had a meltdown in the car, becoming upset and aggressive in a way that I’d rarely seen before. I didn’t know whether to head home or press on, and chose the latter. It was the right decision. Within moments of getting on the horse, Helen was a different person. All her problems seemed to melt away.
Now she has been with us for almost two years and every day we see her making steps forward. Our fourth daughter, Poppy, was born in April last year and she, like the other three, adores her Auntie Helen.
The children throw their arms around her neck when she comes home from her day care asking if she’s “been good”. Simon shares Helen’s passion for Manchester United and if a match goes on past 8.30pm, (when she religiously goes to bed) he’ll shout the score through the door to her the next morning. Helen tells everyone that she has “a new life here” and the transformation is huge. She goes out happily every single day, socialises and has new friends.
For me, life is busy. I juggle my work as a GP with my “five” girls, making sure that for Helen at least, life fits the very strict routine that I know helps her thrive. The paperwork involved with caring for someone with special needs took some getting used to but fortunately I’m an expert multitasker – and at least there’s a good reason why my house is never tidy!
Our parents, who are now both in their 60s, are so grateful that their daughter is happy and content. To paraphrase the Take That song we all love so much, Helen’s world has
“come alive”. It’s a privilege to have helped make that happen.’ •
For more information, visit the
Down’s Syndrome Association website at downs-syndrome.org.uk or call its helpline on 0333 121 2300.