“I’m sure you know this already,” said Julianna’s teacher, sitting in our living room on Saturday morning, “but…Julianna is just so sweet.”
Christian and I exchanged a glance and chuckled, because we hear it all the time. In fact, he’d heard it from the counselor at her school just a couple of days before. And we get it all the time when we’re out and about as a family.
Which makes me really curious to know what goes through my other children’s minds when they hear such things.
The world’s perception of Julianna:

My children’s perception of Julianna:
(:27)
People routinely tell you how great your kids are, and every time they do, you have this surreal moment in which you have to remind yourself that they don’t see all the moments you do. Right? But you’re an adult and you can remove yourself a bit from your own experience and appreciate what others see.
The kids, though–it’s harder for them. Above kidding aside, I really do wonder what my boys think of their sister. The relationships among the three of them are pretty clear. Nicholas is a button-pusher and he knows Alex’s buttons at least as well as he knows mine, but they declare regular cease-fires to play Ninjago or Avengers or Other-Superhero-of-the-Day together. Nicholas wants to be Alex, and Alex’s most common spiritual goal has to do with being nicer to/more patient with his brother. Alex and Michael adore each other, pure and simple. Nicholas and Michael are hurtling toward a mirror image of Alex and Nicholas’ relationship.
But Julianna stands kind of outside all these relationships. She plays with them occasionally, but she’s not cognitively able to play pretend; she still prefers to sit and look through word cards and listen to music. Her communications are different. You never know if you’re getting a straight answer out of her. She’s just, well, different.
We’ve never tried to hide, downplay or otherwise sugar coat Julianna’s differences. Alex began learning about Down syndrome as soon as we could talk about it without crying. Nicholas, being far less empathetic and much more, er, let’s call it focused-on-himself than his older brother, has only in the last six months begun to process what that extra chromosome means. But both of them know that Julianna’s disability means they have an extra long-term responsibility as brothers.
The circumstances of each person’s life color childhood, but the way they react to those circumstances is unique to each child. When I see Alex playing with his cousin or a friend who is around Julianna’s age, it always causes a pang. We had our first two close together partly so that they could be playmates, but it didn’t work out that way. As much as we value treating Julianna like any other child in our family would be treated, we can’t escape the fact that she is different, and those differences force many, many accommodations to be made. She does get treated differently. And I wonder how my boys will react to their sister in the long run.
I hear you loud and clear. Sibling rivalry never happened at my house even though my autistic son and his sister are three years apart. Put simply, he refused to fight with her and let her have her way. She was his favorite playmate. As she got older she stopped bringing friends to the house and the two of them grew apart, but not in a fighting way. Her life has moved on, his hasn’t.
That last sentence sounds so true, and sad at the same time. I often have to remind myself not to bite off the future, just take it one day at a time.
I know a man who takes care of his sister who has Down’s syndrome. He is in his 70’s I believe. She is younger, but I don’t know her age. He once said that his only prayer to God every day is that God will keep him alive one day longer than his sister. That is one of the best declarations of love I have ever heard.
Oh man, now I’m all teared up.
You used a Star Trek clip to describe the inner emotional life of your children, and your family dressed up as The Avengers for Halloween. Mostly I’m just asking you to be my BFF right now.
HAHAHAHA! Done!
So goes the mystery of life and God’s will. “Thy will be done” is not for whimps.
Love the monster. That could be me, some days.
Me, too…unfortunately…