"My niece was born premature, but she is smart as a whip"
"They told my friend that her son was going to have Down syndrome, but he was born totally normal and is just so smart"
"My daughter struggles to gain weight, but is seriously smart"
There is a big emphasis in North American society about being smart, and as a mother with a child with Down syndrome, I pick up on these sentiments a lot. More now than before Phoenix, that's for sure.
And while there is nothing wrong with being smart, it's the over emphasis on it as a source of pride that rubs me the wrong way.
I used to proclaim Phoenix's accomplishments, as if they were badges of merit. Sitting at 9 months, walking at 22 months, good speech and sign language, sight reading at 3. Things she's earned that become a collection of milestones that make her life worthwhile. Accomplishments that said "See? Look what she can do, even with DS!"
There is a mindset that can develop as a parent with a child with an intellectual disability. Where we feel that we need to defend their existence. Where we need to justify why our child's life has meaning, and value, and worth - even though they aren't smart, or have medical conditions, or have surgeries. That without the presence of the intellectual disability people would not wonder if their lives held value or worth. In essence, if their life was worth living.
If I was to be brutally honest with myself, I would admit that I used to think like this too. I thought, "life is hard enough without having to live with a cognitive disability". I used to think that I would definitely, 100%, terminate a pregnancy with a child with DS. No question.
I didn't bank on the faith or support of my boyfriend (now husband), who, despite our risk of DS, felt in his heart that this baby was loved, and wanted, and was going to be good, no matter the presence of DS or not. That whatever happened, it would be ok.
It wasn't ok for me. It wasn't ok for a long time. But it is now. Turns out, I had a lot of work to do on myself, my preconceived ideas, my beliefs, my values and my understanding of worth. Of what constitutes a life worth living. I had to reconsider how important it was to be smart when balanced with all kinds of other attributes that humans possess:compassion, joy, kindness, understanding, affection, acceptance. Attributes that I truly want to pass on to all my children, attributes which possess an importance that moves beyond being smart.
I have come to see that I don't need to defend Phoenix's life. She has brought so much to just my world, that it is hard to describe it fully. First and foremost, this child made me a mother. She has made me grow more than a typical child would have - and for that I am thankful. Because of her, I am a more thoughtful person, more compassionate, more understanding, more contemplative. I have a wider view of the world, including a better understanding of questions like Why am I here? What is my purpose? What is important in life? What makes my life rich?
It doesn't matter to me how smart my children are. It matters how hard they try, that they persevere, that they get back up and try again if they have failed. It matters that they treat others with understanding, compassion, acceptance and reverence. It matters if they are kind, forgiving and loving. The world will not be better for our children if it is filled with people who are smart. It will be better if it is filled with people who are kind. That's what matters folks.