I knew the day would come where Anna’s questions about Down Syndrome would become more difficult to answer. Siblings are often the quiet heroes in our story. They are learning about disability in a very personal way.
We have never shied away from talking about the fact that Noah has Down Syndrome but we never sat her down to make an announcement. She was 3 when Noah was born, she was busy going to creche and exploring her world so she did not notice that we were going through a difficult time. I remember the first time she asked me if I was sad when Noah was born. She was 6 and I answered her very honestly. I told her that yes, I was very sad. I was sad because I did not understand what Down Syndrome meant and I was very worried. But I am not sad anymore because now I know it is not such a big deal. This was enough to satisfy her curiosity and we moved on to the next topic!
The next time it came up was in first class in school. Anna was 7 and her school teacher was going out on Maternity Leave. It was one of the last days before she left and seemingly out of nowhere, Anna piped up in the middle of class to tell her teacher she should not be worried if her baby is born with Down Syndrome. It is not such a big deal, the baby will just need some extra help and of course Anna will be on hand to help out. The whole class had an education that day and she was so wonderfully honest, positive and logic about it all. But it was also clear that she was processing it, thinking about it quietly and coming to her own conclusions.
Noah is a little bigger now and Anna is becoming more aware of the differences between him and other little boys his age. I found it difficult recently when she cried on my knee because her brother was different to other brothers. That she cannot play the same games with him that her friends can play with their little brothers. That it is too hard to explain the rules, that conversations are so challenging and often feel one sided or when she tells me she would like her cousin to be her brother because he can talk and play better games with her.
Of course I come up with wonderful nuggets of wisdom. I reassure her that of course she can play the same games with her brother, it just takes patience and kindness to help him understand the game. I remind her how amazing her brother is, how hard he works, how lucky we are to have him and how much we love our little family. I tell her everybody has challenges with their younger siblings, far away hills always seem greener.
But the truth is, Down Syndrome is a big deal sometimes and it is OK for her to think it sucks. Anna is 8. Her world is one of discovery, fun and imagination. It does suck when you want to play musical statues and no matter how many times you explain the rules, your brother only dances when the music stops. You play Simon Says but he will only stand up or sit down, all other instructions are met with a cheeky non-cooperative grin. You play animal snap and he is delighted when for the 100th time, he matches a chicken with a horse shouting “SNAP” and “Noah wins”.
So how do we get it right? All parents of children with Down Syndrome worry about their other kids. They worry that siblings will feel responsibility for their brother or sister, that they will carry a burden when parents are no longer around or are not as able. We worry that we expect siblings to grow up too fast, handle grown up topics when they are just children themselves.
The funny thing is once I address Anna’s questions, they are not a big deal. I may have a huge lump in my throat as I comfort her but kids don’t think like we do. They have love and acceptance in every bone of their bodies. She will accept my answers to the toughest of questions as long as they are honest and logic. Anna adores her little brother and she will love him forever. It is my job to help her to process her questions, allow her to be herself, embrace the times when life is not all colourful and rosy and be honest about it.
I have stopped worrying about what will happen in 20 years. It is important to take every year as it comes. Yes, we need an element of preparedness for the future, we need to think about financial security for both our kids, we need support and back up plans but I fully expect Noah will have his own life, his own dreams, his own job and he will be responsible for whatever life he chooses. It will not be left on Anna’s shoulders. This is why we support both of them now to be the best version of themselves that they can be.
We are a family, we are quirky, we love each other and sometimes things do suck, lets just put it out there!