Lucas’s Story by his mum Kerry-Ann
Our Life Loving Lucas. My blood screen test with Lucas came back as having a 1 in 283 chance of him having Down Syndrome, which is considered to be “low risk”. Lucas Robert Charlie Bellamy was born on 5th April 2020, during the first Covid 19 lockdown. We had to stay in hospital for two nights, as Lucas was having trouble with maintaining his temperature. But we got him right and went home a couple of days later.
However after two nights at home, Lucas was blue-lighted to resus, after he turned blue and became unresponsive. The paediatrician working the ward, that night, told me that Lucas showed prominent signs of having Down Syndrome. He reassured me that, whatever had happened to Lucas that day, Down Syndrome was not the cause of it. After a lot of blood tests and scans we found out that Lucas had a stroke. Lucas was well enough, when we got this news, that we could go home.
Two days later, we got the phone call confirming that Lucas does have Trisomy21. We were very sad for a long while afterwards. I would often watch over Lucas fast asleep in his crib, next to me, and cry. They were horrible ugly cries, with me thinking my baby boy would have a hard life, in what very much is still a cruel word full of discrimination and negativity, hate and bullying. I was so scared for him. We felt alone, like we were the only people going through this, until we came across the Down Syndrome community. These people and groups made us feel a part of something – a part of a huge family, with the biggest most welcoming arms. Lucas is now 17 months old, and it has been the most eye opening 17 months with him. He is adored not only by me, his dad Scott, big sister Robyn and big brother Harry, plus all our family and friends, but literally by so many people all over the word.
I started a blog page, named “Our Life Loving Lucas T21 Journey”, where we are completely honest and open about our life with him. We share the ordeals he has to go through, on a routine basis. We share the ups, but we also share the downs, because its not always plain sailing. Sometimes, it’s tough and sometimes it’s damn hard! We reached out to Robyn and Harry’s school, for support, which they readily gave to them. This has really helped Robyn and Harry emotionally and mentally, with understanding all the changes we were going through as a family. The estate we live on have also been so supportive. They have kindly donated towards fundraisers we have done, whether it be to donate prizes to give away, or dipping into there own pockets.
We are recognised on the estate, and I love that we are stopped to say hello and chat, even interacting with Lucas. I love it when people interact with him. We all need that social aspect in life, and it just makes me beam with pride and affection, not only for Lucas but for those people that take the time to acknowledge him as a person. They are the good people of the world who we need more of. I’m not saying we haven’t had any negative experiences. We have had our share of ignorant, uneducated people and, yes, there have been times where we have spoken out. We are advocates for Lucas. We fight the battles for him and it will always be that way. Even when he can fight those battles for himself, we will always be right behind him.
The one place I love to be with Lucas is Tik Tok. What started as an, “I will just sit and watch funny videos” thing, has become a “Let’s join in and do some videos” thing! WE LOVE IT! When I said Lucas is loved all over the world, this is where it began. We have followers from USA, Germany, Australia, Poland, Mexico, etc. The Down Syndrome community on Tik Tok is so big too! A lot of teenagers who have Down Syndrome are joining in on the trends. They are sharing their world and their lives, and showing that Down Syndrome does not stop them from being them or from having a very good life. Also there are many little ones, like Lucas, whose parents are, like us, figuring it out as we go, but having fun with it and spreading that awareness. We have gone viral on a couple of our videos. The aim is to share information, spread positivity, awareness and to have soooo much fun. People are crazy about Lucas. We have positive comment after positive comment, and its difficult to keep up with sometimes. We have had one or two ignorant comments but I have found just by reporting the comment, deleting it and then blocking the user we don’t really get any hassle.
Sometimes its just best to roll your eyes and get on with it! Spreading awareness gives us the opportunity to combat the myths and misconceptions about Down Syndrome. We are able to spread a more positive light, to educate and most of all to share our world of absolute awesomeness. We celebrate our beautiful extras who are in our lives! Whether they be a son, a daughter, a niece, nephew, grandchild, Down Syndrome should be accepted and celebrated.