Ivan is disabled - that's just a fact of life. He's blind and has global physical and cognitive delays. But that's not what I see when I look at him. I see a vibrant and happy child who enjoys his life and loves his family.
So I want to be clear: I don't want my friends or family to feel sorry for me or for my child. I'm not saying this in a tough "I can handle this so you don't have to worry" kind of way or even in a dismissive "we don't need your pity" kind of way.
I'm saying this because when others feel sorry for us it hurts. It's painful to hear that our lives are so terrible we deserve pity.
I'm absolutely bursting with pride and love for my son so imagine what it feels like when a friend or family member looks at him and says, "Ah, it's just so sad. I'm so sorry."
What happens to all my happiness and pride? Gone. Wiped out. Because I am forced, even if just for a moment, to look at my child in a new way, through the eyes of someone who sees my son and thinks TRAGEDY!
Why in the world would someone say this to any parent? If you were to say "I'm sorry" about a typically developing child it would be considered rude! But if the child has a disability... if they are (gasp) BLIND... this platitude is spoken to fill that uncomfortable space created by disability when people just don't know what else to say.
Well, here's a hint - we don't have to talk about disability like it's the end of the world because it isn't. And we certainly shouldn't place fear, shame and pity on a parent who is focused tirelessly on raising their child to be the best person they can be.
Disability comes in many forms, some more obvious than others, but the one thing that is constant is a parent's intense love and pride for their child no matter what. Never underestimate that love. A simple "I'm sorry" goes a long way to try to undermine it.
I know so many kids who are fighting multiple challenges and doing so with joy. Their lives are rich and full of purpose. They do not make me sad and I don't feel sorry for them. Let me tell you about some of our friends...
You may see: A blind child listening to the birds in the park that he will never be able to see.
I see: A child using his hearing to fully appreciate the beauty around him.
You may see: A child using a stick to get around because she can't see where she is going.
I see: A child learning to become a confident and independent traveler with their white cane.
You may see: A child who is non-verbal and unable to speak.
I see: A child using a switch or augmentative communication device to communicate with her family and friends.
You may see: A child in a wheelchair who can't walk on his own.
I see: A happy kid clapping his hands and stomping his feet because he wants to be pushed faster!
These kids don't make me sad. I'm not sorry for them or for their families because I know that they find happiness despite their struggles.