After 11 years on this journey with my son, I’ve heard just about everything. Here are just 5 comments or questions that you shouldn’t say to a parent of a child with a life-limiting illness, and why you shouldn’t.

“How long will he live?”

Let me get one thing straight from the start: unless you know me well enough to ask what colour of panties I am wearing, you do not know me well enough to ask me the most sensitive question of how long my son will live. Bite your tongue. Resist. Just don’t do it. It cuts too deep and is most likely none of your business.

**There is one exception to this, other than being a close enough friend that you could actually ask about the colour of my panties, and that is if you are a fellow parent of a child with a life-limiting illness. In that case, the rules have changed and it is acceptable. I’ve asked other SN parents and they’ve asked me. It’s a family of sorts within which we have certain exceptions made for each other.

“If I knew my baby was going to turn out like that, I would have had an abortion”

Yes, I have actually had this said to me. Disgusting and appalling and it should never, ever be said to any parent of any special needs child…ever! You can think it, you can feel it, but for God’s sake, don’t ever say it to a parent! I don’t think this one needs an explanation as to why you shouldn’t say it. That’s obvious. But, I will say this…

To give of one’s self physically, emotionally, psychologically, and in all ways, to a child that you know you will one day be burying is the most selfless act of parenting there is. And it is damn hard at times. Some may say they would never do it, could never do it, and there are times WE say we can’t do it anymore…yet we do. You see, the unsought for GIFT and LIFE LESSON we receive in return is that of genuine, pure, unconditional love. We have the honour of now knowing what it means to GIVE and to RECEIVE true unconditional love. 

How could you have brought another child into your family when you had your hands full with your SN child…it was selfish of you to do and both children will have to sacrifice, which isn’t fair on either of them.

Oh, where do I start?! Life is not fair. Full stop. And isn’t that one of the very lessons we were taught as children? Isn’t that one of the lessons we now teach our own children? (and if not, we should be!) After all, no one ever said “Life will be fair. You will not have to sacrifice.” What others need to understand is that there is this amazing, beautiful bond that happens between a child with special needs and the healthy sibling. It’s indescribable nearly. BOTH children flourish as a result of their sibling. Do either of them sacrifice in some way, maybe lose out on time spent with a parent…or getting to go out to the cinema but can’t because the child with SNs can’t go…or being stuck in a hospital room for a week and having to entertain himself while sitting next to his sick brother? Sure! That happens. And it happens more than we parents would like. A lot more. But hear this: those healthy siblings are growing up with an extraordinary sense of compassion that you can’t even begin to imagine unless you’ve seen it first hand. They are “forced” to reach inside of themselves and be creative in play during those many, many hours sitting in an A & E or the dreaded week in the hospital room. They are learning a strength, a resiliency, that will serve them later in life – a quality of character which most children will not have had the opportunity to have gained. As they say, no one said it would be easy, they just said it would be worth it.

What’s wrong with him?

Ok, I fully understand that this question, or the wording thereof, usually comes from a place of not meaning harm. I get it. Please, if you are tempted after reading this to ask a parent about their child, refrain from saying “whats wrong with him?” There is nothing wrong with him. He does, though, have a condition. It is always better to ask “If you don’t mind me asking, what is his condition?” or “what has caused his challenges?” After all, we all have challenges, don’t we, but it doesn’t mean there is something wrong with us. Afford the same respect to our children, please.

You should put your child into a “home” and get on with your life’s dreams

Yep, I’ve heard this one, too. I know, unbelievable, right? It is, but considering the source is something parents on this journey learn to do from early on. We have to in order to survive. When it comes to this type of comment, my reply is always this: My dream was to be a mother and it is my son that made that dream come true. And there I leave it with the person to ponder.

Dreams are a funny thing. Sometimes we can influence what we dream, but most times we cannot. We can, however, dream new dreams. And we do. Beautiful new dreams.