When we're out in public with Juls and we meet new people, it often comes up in conversation that he was adopted (as a multiracial family, we stand out). Inevitably, the new person then reacts with a sappy "Aaaaaaawwwwwwwww" as though Julian was a sad puppy that we pulled out of a burning house. They tend to follow up with one or more of the following super offensive cliches:
"Wow, it takes a SPECIAL person."
"He is SO lucky."
"You're doing God's work."
"That must be SO hard."
"You know he'll live with you FOREVER right?!"
Yikes. So much to unpack here. The thing is, it doesn't matter that these people mean well, that they're trying to be nice, etc. etc. It is simply not okay to view my child with disabilities in such a negative way.
First off, it doesn't take a special person to choose to adopt a disabled child. It takes a parent who understands that parenthood is a privilege. It takes a parent who is willing to learn about disability rights and services. It takes someone who isn't afraid of hard work and who knows that pursuing a life in service to others is far more fulfilling than a life in pursuit of selfish gains. My partner and I aren't special, we are regular ass people. Our disabled son brings joy, purpose, structure and adventure into our lives. He's the special one, not us.
My children aren't lucky to have experiences trauma, neglect, abuse and/or loss through foster care and adoption. I have a whole post about this, so I'll just leave it at that.
Are we doing God's work? That's a complicated statement. We are not a Christian family. I would describe us as spiritual, hopeful agnostics. We don't know what's after this life, but we feel that there's something, someone, bigger and greater than ourselves involved. But make no mistake, we adopted Julian because we wanted to because he's THE SHIT, not because we thought God or whomever wanted us to.
Caring for a disabled family member is not "hard". It can be physically strenuous, but we keep our bodies fit so that we can care for our son well, and it's amazing to have such a great motivation to treat our bodies well! Caring for Julian consumes much of our days, and we love that. He's a source of so much joy for us, and the many hours that we pour into his care are given with joyful hearts. There's nothing we'd rather be doing.
As to him living with us forever, we hope so. My partner and I are in pursuit of different goals than many of our peers and we are fine with that. We don't long for a childfree retirement in isolation, spending our long hoarded riches on only ourselves. I pray every day for a long life with all of our children. A perfect scenario in old age for my partner and I would be living in a supported living setting with our disabled children by our side, getting to see our more independent children regularly, all of us enjoying a relatively healthy last stage of life. I pray for old age for my disabled child, even as I know that with his disabilities comes a somewhat shorter lifespan. Even though I know that the reality is that I'll someday walk this earth without him, I hope not. Please God, universe, whoever, let me not know this world without my children. Him living with us "forever" would be a dream come true!
Next time you meet someone with a disabled child, please save the pity. Instead, smile and tell them how nice it is to meet their unique blessing. Look that Mama or Papa in the eye and say "Wow, you're so lucky to have a child as wonderful and special as them."
Love you always, always, always baby J-bird. We are forever the lucky ones.