It was National Siblings Day last Friday, 10 April. This is primarily celebrated in the United States, but is gaining recognition internationally. The founder, Claudia Evart, created the day to honour her brother and sister, who both died at an early age. As she states, ‘the siblings bonds are life-long relationships, usually lasting from cradle to grave. It is usually the longest relationship of a person’s life and typically much longer than a mother’s and father’s relationship.’
Another story that stood out for me this past week was 21 year old American, Jordan Spieth, winning the Masters on Sunday. He has a 14 year old sister who is special needs. Last year, he was quoted as saying in an interview, ‘Ellie certainly is the best thing that’s happened in our family’. Jordan also states on his website that ‘being Ellie’s brother humbles me every day of my life.’ When I read that, I was filled with hope and it really touched me, as I completely understood. I don’t have a sibling who is special needs, but I have the privilege of witnessing every day, the extraordinary bond of my three boys.
When Nicholas was born with Down syndrome and we became a family of five, I was met with many questions from people:
- Have his brothers accepted him?
- Is Nicholas more work than the other two?
- Have you told his brothers that they’ll be looking after him for the rest of his life?
These are all valid questions, but nothing I’ve felt I have had to worry about. Yes, the first six months after Nicholas’s birth was hard for the family. His brothers only met him when he left the NICU after three weeks. They then had him home for ten days, when he went back into hospital with RSV, followed by open-heart surgery when he was four months old. In that time, we tried to maintain some form of unity, taking turns going to the hospital for visiting hours. It was important to establish a sense of normality until Nicholas came home and we were finally under one roof again. When he eventually left the hospital, he was like any other baby who needed to be fed, changed, soothed and most importantly, loved. The boys immediately took to their roles of protective older brothers and were so excited to have Nicholas join the family.
As Nicholas became a toddler, I didn’t find myself having to focus all my time and energy solely on him, thereby neglecting the other two. We’ve also been incredibly luckily that he’s been relatively healthy. He now goes to school three times a week and the other two days are busy with therapy. The afternoons are then spent on his brothers’ homework, extra-murals and sports matches. All children initially struggle learning to share, especially their parents’ time, but as I keep telling them, ‘I am only one person.’ I simply do the best that I can. Each one gets individual attention when possible, but thankfully they also just love being together. For them, their best time is when the five of us are doing things as a family.
Nicholas is a great source of amusement for his brothers and they really draw such joy from his happy disposition and mischievous innocence. The three of them will spend hours playing with each other, with just a couch and some pillows as props. Being all boys, it sometimes tends to get out of hand (and Nicholas definitely thinks he’s older than he is!), but his brothers are very gentle with him and he in turn just adores them. We’ve never felt the need to sit the boys down and explain to them that Nicholas will need looking after for the rest of his life. To be honest, we are very positive about his future and what he could one day accomplish as an adult. Who knows, he might be looking after all of us, instead of the other way around!
I see the look of pride on the boys’ faces, when I bring Nicholas to school with me and all the children gather around him. Nicholas was born with a double thumb on his right hand, so essentially has eleven fingers. This has brought on much curiosity when all the children first spotted it and they love to see it and ask about it. Two years ago, my eldest was in Grade R when his teacher told the class, ‘isn’t Nicholas lucky? He gets to count to eleven!’ Needless to say, there were a few jealous classmates, not content with only ten digits.
I’m not naïve. I know that Nicholas, who is not yet three, is going through that cute and adorable phase. It’s hard not to be drawn to him with that grin and sunny personality. But I know the boys might be exposed to bullying down the line and unfortunately, it doesn’t take much to be teased. You wear glasses, have skinny legs or are simply born with red hair. I just hope that their love and admiration for Nicholas will give them the courage and strength to stand up for themselves, and for Nicholas, in those situations. I also know that there will be times when they might feel embarrassed by their little brother, but that’s all part of growing up. Just like the fact that siblings fight. And they may go through stages of loving and loathing throughout their relationship. My sister was a sulky teenager and I in turn, was overprotective and bossy over her. I was the older sister only by twenty-one months, yet I acted as if I was her mother. The teen years were a strain on our relationship, but it passed and we couldn’t be closer. When we lost both our parents by our early thirties, we leant on each for guidance and support, not because we were taught to, but because that’s what siblings who love each other do.
I don’t worry about the future of my boys. I am so grateful that Nicholas has his two big brothers who will always be there for him. The love they have for their little brother will forever be entrenched in their hearts. And in turn, I’m so grateful that they have Nicholas in their lives. They will learn about difference and acceptance from an early age. These life lessons will help them grow up to be kind, caring and compassionate young men. I believe that they will continue the journey of changing people’s perceptions and just simply loving Nicholas for exactly the person he is, extra chromosome or not.