Wise Words from a Man with Down Syndrome23 June 2015 2021-06-16 0:00
Wise Words from a Man with Down Syndrome
Wise Words from a Man with Down Syndrome
I was recently in Canada visiting, family. I was home for my eldest brother’s wedding, and it was a beautiful, intimate gathering of family and friends. While I was home I had the opportunity to spend time with my siblings. It wasn’t rushed time, it was real time, and it was so good.
Soul food, indeed.
On one particular day my sister, her youngest daughter and my little brother, Peter, were out for lunch. Now many of you have heard me talk about Peter; you may have seen pictures or videos of him or previous articles I have written. Why is Peter such an inspiration to my work? Is it because he’s special needs? My little brother is a 37-year-old man with Down Syndrome. Or, is it because he sees the beauty of life in an uncomplicated and pure way? Is it because he speaks his mind so freely? Or could it be that he understands unconditional love, and he shares it from a place of real understanding?
It would seem that I am writing about someone with great ability, great insight and wisdom. That is Peter. For those of us who have the privilege of travelling through life with a person with Down Syndrome, we know the depths of their knowledge and wisdom.
Throughout my little brother’s life, he has said one thing to my mother on a regular basis that has always captivated our hearts.
On special occasions where he is at a loss for what to say, when he senses my mother has had a tough day or when her heart is heavy, he shares this powerful statement. “Thanks for having me, Mum.” Why is that so powerful? Why are those five words that go straight to the heart when he says them? These words are so powerful because Peter’s life has been threatened from the very beginning.
While he was growing and establishing within my mother’s womb, the doctors suspected something was wrong with him, they told my mother to abort him. To get rid of him and to forget about him. When he was born, there were question marks around him, they weren’t sure what was wrong. And we are only talking 1978, the year of his birth. My mother was told to put him away, to institutionalise him and forget he was born. She was encouraged to not even introduce him to his siblings (Robert, Katherine and myself). Get rid of him and when that didn’t happen forget him.
I hope I’ve painted a picture of his life. He is a wise, kind-hearted man who has impacted so many. He has a brave mother and father who chose not to get rid of him or hide him away but rather to celebrate him. To give him life like their other children, to do the best for him that they possibly could. They started a school for children like him. My mother advocated for him, she raised him to be one of our tribe and he, like his siblings were loved and valued for who we were and not for who the world thought any of us should be. My brother has Down Syndrome, and he is a functioning addition to society.
The world needs him, and he needs the world.
Now back to the lunch we were having while I was home. My brother now has another profound five-word sentence. Five words seems to be his thing. Recently, as a family, we have traveled through a terrible time. We have been advocating for my brothers care and his life. It has been a hard battle where there have been question marks surrounding the care provided to him, his dignity, his value and his worth.
He can’t express everything yet he expresses so much if you give him the respect of listening to him and choosing to hear him. He feels pain and sadness, and like all of us he processes grief, anger, frustration, disappointment and everything else. Sadly, people like my brother don’t always get the same respect others get. For whatever reason, the level of respect seems to differ when people have limited or rather different mental function.
I find that very sad.
Recently, changes have been made to my brothers living arrangements, and by the time he arrived at his new care facility he was as close to death as you would want to be. Sadly, this closeness came from something as simple as lack of oxygen that was easily detected, changed and now he is functioning with great ability. A simple overlooked issue. Of course, this was one of many issues that have been addressed, and he is now happier than ever.
The profound 5-word sentence my brother now shares in addition to ‘Thanks for having me, Mum’ was said over our lunch that day. During our lunch, there was a lull in the conversation. Our gentle giant then gazed across the table, his big blue eyes wide open and sparkled (a result of having oxygen flowing freely through your body). He looked at my beautiful, strong and courageous sister and said, “Kath, you saved my life.”
My sister has been leading the charge when it comes to advocating for my brother.
Robert (my elder brother), and I have been deeply engaged in this and my elder brother greatly in a practical way. Katherine has led our meetings, she has stayed on course with facts in hand, she has called doctors, politicians, she has been relentless in the pursuit of health and happiness for our brother.
Through her held back tears, she promised him that everything would be okay, that he would be safe. He trusted her as he has many times before and as she gave him courage through her encouragement. He, in his wisdom and insight, realises that she saved his life and for that he is forever grateful. Does he know that my brother and I were alongside her through it all, yes. Is he grateful to us, yes but like he knows when my mum needs to hear his five words, he knew at that moment that she needed to hear. ‘Kath, you saved my life’.
My sister lives to serve others. In this and in many throughout her life I would suggest she not only understands but lives the scripture in John 15:13. ‘There is no greater love than this: that a person would lay down his life for the sake of his friends.”
Our little brother has brought great joy into our lives. He has challenged us. At times he has driven us all a little crazy. He has served as a constant reminder of why you can rather than can’t. He has demonstrated unconditional love. God created him, and he has lived a life of impact. I can’t even imagine a life without him, a life where he didn’t exist, or he was put away never to be seen again. What a loss that would have been for this world.