A model in the making
Molly Johnson is a social media hit with her own blog and an impressive following
Discovering your child has a disability of any kind is a devastating thing for a parent to hear. When Molly’s parents heard these words the initial shock they felt is easy to understand, but theirs is a story with a happy ending and perfectly encompasses the meaning of a silver lining.
Early on in Rhona Cullinan’s pregnancy she and her partner learned their unborn baby had a heart problem as well as fluid on the back of her neck. After coming to terms with the possibility that their daughter may be born with Down Syndrome, the couple decided to wait until Molly arrived to know for sure.
“It was a very difficult labour, we nearly lost her and they nearly lost me as well because it went very badly in the end. We were so relieved when Molly was born that she was alive and that she and I were both okay, so that squashed everything else,” says Rhona. Fear of the unknown and of what lay ahead were concerns, but she realised many were unfounded. “My main fear was ignorance; I thought she wasn’t going to be a normal child but I don’t use that word anymore, I call them typical children. I had expected family and friends to be commiserating or feeling sorry for us, but it was the complete opposite. They congratulated us and said we’ll have an amazing life,” Rhona says.
“We have two older boys as well so I thought I was going to miss out on the girly days going shopping, her having a boyfriend or getting married; that’s what I cried about. It wasn’t her education or things like that, because that could be any child. She will have some difficulties, a different syllabus, different milestones and she might have less filters but who doesn’t? This is the message I’m trying to get across, that it’s not a bad thing. Children with Down Syndrome are so happy in themselves and so loving. There’s just something magical about them.”
When Molly was first born Rhona found great solace in reading blogs created by parents who were in a similar situation to her own. Seeing the developments these children were making was very reassuring at the time. This is what inspired Rhona to set up her own blog, dedicated entirely to Molly and the progress she makes.
“I had been reading blogs by people who were further down the line than we were and I went, ‘Okay, it’s not that bad.’ That’s why I set up my own one and it is therapeutic for me to write about it as we go along. It was daunting at the beginning and she has had a lot of appointments; physiotherapy, occupational therapy. It can be overwhelming when you hear about all of those appointments at the start, but when you actually do them they’re okay. I do want to stress that we’re very lucky and there are other children who aren’t as fortunate, who have a lot of medical problems and complications. So, we’re really lucky with Molly, I’m not blasé about that.”
Molly’s heart condition is called Tetralogy of Fallot and on March 15, 2017 she was due to undergo an operation to do a full repair to her heart. However, the surgeons were not able to go ahead because they discovered Molly’s pulmonary artery was smaller than the scan had indicated and it would be too risky. “They put in a BT shunt which will help the blood flow to her Pulmonary Artery which should help it to grow,” Rhona says.
“We will be monitored over the next four or five months and when the artery has sufficiently grown she will have the full repair operation then. At the moment she is doing great and she’s as smiley as ever. She’s full of character and full of life. I’m looking forward to the future now and I can’t wait for her to get older, to go shopping with her, to do all of those bits with her and to see her grow. I’m excited about the future now as opposed to dreading it.”