Before I get melodramatic, the truth is I've never pulled punches with close friends, but some of these worries are founded on raw terror. They're concepts that make people uncomfortable, and sometimes I just want someone to hear me and not try to make it better. These concerns may sound a bit like I'm a whiney moper. I swear I'm not. I hope you can read these and understand they are born from intense love for a vulnerable child.
Is love enough?
At night, I wonder if you would love Charlie enough to take care of him the right way, if I were gone. Yes, this is morbid, and no, I don't drink every night before bed. But reality dictates that parents have these thoughts, and parents of children with special needs are particularly tormented. You see, loving my child won't be enough. You would need to feel a passion to fight for him constantly.
No, he doesn't always act like that
This one sounds superficial, but it's well meaning, I promise. Because people aren't around children with Down syndrome often, I feel (ridiculous, self-imposed) pressure to make every experience positive. But sometimes, when we're with new people or a large group, Charlie becomes overwhelmed. He gets quiet and so busy focusing on his surroundings, his tongue lags slightly from his mouth and he looks a little dazed. That impression may be the only one people get.
Part of me desperately needs others to see how vibrant his personality is, how sharp he can be, how direct and how funny -- but you might not see any of those things unless you hang with us for a while. (And it's not because I care what you think of me. It's because I want you to know my child and love him as I do.)
I pray for kindness
When our children interact, I silently plead with God to help your child be kind to my child. This is no reflection on how I think you're raising your child. I wouldn't be friends with parents who let their children be cruel to others. But children are honest creatures and sometimes honesty feels harsh.
Charlie looks old enough to understand and do what other kids his age understand and do… but he's not there yet. Children can become frustrated, annoyed and downright dismissive. I don't know how to prevent this, because I don't want children to have preconceived ideas or treat him differently before getting to know him. Maybe all we can do is teach our children patience and kindness and work through tough times together. (And when your children are kind… my heart bursts!)
I read between the lines
When you ask me if we know how severe his mental disability is, it feels like you're saying it matters. I know that's not what you mean. I know you mean well. I know you love us. But you're my friend. Our love, which automatically extends to our children, is supposed to be unconditional. I love Charlie more than I could ever have imagined, and I want you to love him, too. Whatever challenges await us in the future won't change how much we love our son and how much we will do anything for him.
I don't always sympathize
I love your child and want only the best… but when I hear you complain about something they do with no effort, my heart aches. Charlie has had to work so hard for the slightest thing -- even picking up a Cheerio with two fingers, versus an open palm. It is so hard to sympathize when a parent complains about something I would give a limb for my child to be able to do.
I'm a little envious sometimes
I love your child and want only the best… but it's still so hard for me to hear you brag about what your child -- who is younger than Charlie -- has achieved freakishly early. Period.
Charlie is a little boy first
Yes, he sits in time-out! Children with special needs require extra attention but that doesn't mean they should be coddled. In fact, it's quite the opposite. Discipline and structure mean everything. A little boy who looks at you with a mischievous glint in his eye, picks out the heaviest toy in the bin and painstakingly hurls it at his sister's head is in fact testing boundaries, his mother's patience and possibly his pitching arm. He's a sharp reminder that a child with Down syndrome is a typical little boy in so, so many ways.