5 things I’ve learned from having a daughter with Down Syndrome

Today is World Down Syndrome Day, a day where individuals with Down Syndrome are recognised and celebrated. Today’s date represents the 3 copies of the 21st chromosome that all people with Down Syndrome have.  I myself have so much to celebrate in Chloe. She has added so much dimension and colour and happiness to our lives which I did not expect when I was told of her diagnosis. I have been in awe watching her grow into the fun-loving, sweet yet daring little girl that she is today. Chloe has taught me so much about life in such a short time and here are 5 things that I have learned so far.

1. Live in the moment. Don’t worry about the future.
   When Chloe was born, I spent a lot of time imagining the future and what life would be like for her and for us as a family. I worried about her milestones, school, her teenage years, getting a job – all that stuff. Now that we have reached and passed many of her milestones, a lot of the things that I worried about did not actually come to pass. I know life will be challenging but I don’t know exactly what or how these challenges will affect Chloe in the future so there is no point worrying about it now. I have learned to live more in the moment and to address each challenge as they come. You can’t waste time worrying about something that hasn’t even happened yet. (or might not happen for that matter!) There is a quote I read somewhere once which sums this up perfectly: Worrying does not take away tomorrow’s troubles, it takes away today’s peace.
2. Patience.
   We live in such a fast paced world where just about everything you want you can have access to in an instant. Our lives are jam packed and we are always looking for shortcuts to get things done and make things happen as quickly as possible. When it comes to a child’s development, each and every one of them learns at their own pace, regardless of whether they have Down Syndrome or not. With Chloe, we have to slow things down and allow her to take her time. She is determined to do things on her own which is amazing but it does take up a lot of time.

   Each night, Chloe has spelling words to work through. If ever I have had to have patience, this is one of those times!  Chloe has her own way of doing things and if I try to show her a quicker or easier way, she wants no bar of it. Most of the time, we ditch the pencil altogether and try writing words on the iPad or simply spelling the words out verbally which she seems to prefer. No matter what goal we set for Chloe, she does get there – just in her own time and in her own way. Patience is a virtue as they say and I have learnt to slow things down when needed to give her the time to do what she needs to do. Life takes time and there is no need to rush it.

3. Always find a reason to smile.
   Chloe is one of the happiest and most easy going kids I have ever known. Nothing seems to get her down. She finds joy in the everyday and gets over things quicker than anyone I know. She doesn’t hold grudges or throw tantrums if things don’t go her way. She just moves on to something else. It’s like she doesn’t want to waste a single minute of her life being angry or sad. No matter what she is doing, she always finds a way to make it happy and fun. Now isn’t that an amazing way to live life?
   This photo of Chloe is still one of my favourites. I took this on the first morning that Chloe was moved out of Intensive Care after heart surgery. Most of her tubes and drains had been removed the night before and when she woke up, she just wouldn’t stop smiling at me! It was the happiest I had ever seen her in the first 3 months of her life! It was almost like she knew that her heart was better and that she didn’t need to struggle to breathe anymore. Since then, there have been plenty of other times where Chloe has still managed to smile or laugh when she has been unwell. Even through a terrible bout of gastro, she will still find something to smile about!
4. Life was never meant to be easy.
   I have always planned everything and it gets me really off kilter when things don’t go according to my plans. I certainly did not plan on having a baby with Down Syndrome and at first, I couldn’t get my head around why this was happening. I realise now that none of us are entitled to a life without challenges or hardship. We all have our daily struggles – some are certainly harder than others but that is what makes life interesting and worth fighting for. Life was not meant to be easy and when we face difficulties, it is an opportunity for us to learn and grow. These days, I try hard to not let challenges consume me. I push through to overcome them knowing full well that they are helping me to become a better person.
5. Don’t believe everything that you read or what doctors tell you.
   If you read about Down Syndrome on the internet like I did when I first received Chloe’s diagnosis while I was 36 weeks pregnant, it would make you think the worst. Having Down Syndrome does impact each individual and there are many things that can be affected. When you read any medical information or talk to any doctor, it seems that you are being given the absolute worst case scenario. All children with Down Syndrome are different so not everything you read about is going to happen to your child. I have learned to always have hope and believe that everything is going to turn out OK – and so far with Chloe it has!  If you walk around thinking the worst about any medical condition, you are giving up on living your best life. You obviously need to be realistic about a diagnosis but accepting it, having hope and doing the best you can to give yourself the best outcome is the only way to deal with it.

Chloe has brought so much joy to our family and friends and to many others at her school, dancing and even strangers that we meet. She always smiles and says hello as she makes her way through a shopping centre and that smile is always reciprocated. I worried so much about how people would perceive Chloe and whether she would be loved and accepted. But I never should have worried about that at all. This little girl is making her mark on the world and she is doing it at her own pace and in her own unique way.

We love our little Chloe so much I couldn’t imagine life without her just the way she is. Happy World Down Syndrome Day! xo