Wednesday, September 11, 2013

Drawing No Lines

We are three women sitting on the ground, dirty cement, under the roof of the picnic area. The heat is oppressive but there is a cross breeze that drifts through the open sides. In the middle of our little circle, sit three babies, all girls, all nearly the same age. December babies. Jude is thrilled at these little people in front of her. She stares at them intensely her little head nodding up and down in her effort to concentrate. When one reaches out to pull her hair, she is not so thrilled but really who could resist such a copious amount of hair?

As we chat, I give Jude her chewy necklace. Jude plays with it and naturally the aforementioned other baby can not resist the charms of such a toy. She grabs it, and starts a game of tug of war. Jude is not having it, and she pulls hard, determined to not let the baby have her treasure. The other baby manages to pull the necklace from Jude. Jude lunges forward, growling! She is not giving up her toy without a fight. And it's classic Jude. Nothing phases her. When she wants something, she's going to do whatever it takes to get that something.

I remember when Jude was smaller people telling me that it would be hard to see "typical" babies doing what Jude was not doing. These ideas are planted whether you want them or not and when we first began to hang out at the park again I found myself comparing Jude to these other two babies. One baby was starting to crawl and climb. She scurried over her mom onto my lap for a closer look at Jude who just sat there. And I felt bad. As we made the long drive home, I told H how hard it was to see the baby doing stuff Jude wasn't. H gave me that look. The look that says "Really woman come to your senses now." And I did. Jude's development is just a mute point in our world because we're too busy with Jude to care about charts or comparisons. None of our kids followed a tidy chart, and it's pretty silly to expect that with number five.

Now as I watch Jude fighting for her bead necklace, I realize that not just for us but for these babies and their moms, Jude is just a baby. We are three moms who have babies that we are hoping will get to grow up a bit together. They will be each other's play companions at these park days. Jude is really just one of the gang. They are all different. Different stages, different skills, different individuals come together for some baby fun. (And a little danger evident in the stealing of the teething necklace).

The moment stayed with me as we drove home, and throughout the evening. I kept smiling as I remembered Jude fighting for her little necklace. What hit me later as I thought back to this moment was how incredibly normal it was. It was just three babies having a good time together. Exploring the world where other little people existed. There was no lines that said "This one baby here is intellectually disabled." "This baby here is Hispanic and African-American." "This baby has allergies." There were instead intersections between all these babies that made them alike. And here in this time Jude was quite simply Jude. And this is how life has become for us. Even with therapies and some extra doctors appointments, we are just living in the being of us. Jude is no different than any of the other beasties as we adapt our flow to include her stream with ours.

I no longer think about Jude having Down syndrome all the time. There are days that float by when I don't even think the words "Down syndrome". It's such a minor part, frankly, of who this baby is to us. There was a time when I didn't think I would ever feel this way. I was consumed with thinking about what Jude having Down syndrome would mean in our lives. Before she was born, I worried that it would destroy our lives. I imagined our whole family as dredges to her disability. Then right before she was born and when I held her, I swung to the other side. She was MORE amazing than any other baby. She was a miracle. A gift. More than even the other children. We would become better people under her tutelage. She would show us how to love purely. And then, thankfully, we swung back to a place where Jude is just a human who like us all will have her own challenges and her own strengths throughout her life. But Down syndrome has merely become one small piece in this person known as Jude. Instead we have come to know this tiny person named Jude who is everyday becoming.


Diane Hill said...

Well said friend! I realized after my last post about the whole thing that it's just not a big deal. They are just perfect little babies the way they are. It's nice to have days go by and not even think about Ds. I hope to snuggle that sweet girl someday!

Down Wit Dat said...


Extranjera said...

I'm starting to think that once you give birth to (or adopt or whatever) a baby with Down syndrome some unknown force, we could maybe call the 'Son of Google' hits you on the side of the head and inserts this strange ideology into your head, some of the main poits of which are: 1) There will be grief, but you'll get over it. 2) You will feel bad when other kids reach milestones before your child, but you'll get over it. 3) More strange crap

What a load of BS. Why should an extra chromosome ever define how each of our parenting experience is? Why aren't we questioning more of this 'wisdom' raining down from parents of other kids, healthcare professionals, psychologists, educators, etc? Why aren't we more actively challenging not just what it means to have Ds in today's world, but what it means to parent someone with Ds (i.e. the whole milestone/ comparing 'naturally' followed by sadness) , or what it means to educate someone with Ds?