Saturday, March 30, 2013
Friday, March 29, 2013
Friday, March 22, 2013
|photo by Nana Sally|
I should write something for Nadia's birthday and Down Syndrome Awareness Day.
First, I need to tell anyone who reads this that I am not an authority on DS or Nadia. There will be a day when Nadia will explain herself to me, and the scales will fall from my eyes. For now, I can really only offer color commentary.
Jessica found out about the possibility of Down Syndrome in Nadia while getting some routine pregnancy stuff done. When Jessica was pregnant with Sofia, I went to almost every appointment I could. Even though I was in Gallatin in school and staying with my grandparents two days out of the week, I tried to always be involved in the pregnancy stuff. I've spent my life around fathers who show little interest in pregnancy, or the development of children in general outside of teaching boys how to be men, and even then a lot of what I have been around has been questionable. I've never understood why many men wouldn't want to be constantly in the middle of the life of a person they helped to create. After we had Sofia, though, school got harder and we got more confident as parents. Sofia's pregnancy and birth and first couple of years were as carefree as anyone could hope for. I got lazy. I didn't go to nearly as many appointments with Jessica during Nadia's pregnancy. I don't remember hearing her heartbeat for the first time like I did with Sofia. Now, two years into her life, what I remember most about Nadia's pregnancy is that I wasn't there when Jessica found out.
Jessica came home that night and told me that it wasn't for sure, but that we were probably going to have a baby, then a toddler, then a little girl, then a big girl, and then an adult with Down Syndrome.
Jessica said that the woman doing the ultrasound noticed a measurement of the spinal cord which is often an early indicator of the condition. The woman told Jessica that she needed to get the doctor, and left the room. Jessica waited and waited, knowing that something was. . .different. The doctor told Jessica that there were two different tests that could be run to learn for certain whether our little girl had DS. One test could happen right away, but had a higher risk of miscarriage. Another test had to happen later, and was safer, but that test happens so late in the pregnancy that abortion is not an option.
Jessica chose the option that was safer for the baby. I don't have the ability to describe to you how I dealt with the news as she explained it to me the night after she found out, alone, in the doctor's office. However, I can tell you that when I was lying in our living room in the bay window next to the chaise lounge, what bothered me most was that Jessica had made the testing decision on her own. I didn't disagree, but I was annoyed that I had not been given the opportunity to do so.
This is how you know that I had no idea what was actually happening. That reaction had nothing to do with Nadia.
Jessica and I did not enjoy the pregnancy like we did when Sofia was on the way. We worried. We tried to prepare ourselves for something we had no previous experience with, but ended up terrifying ourselves with more information than was useful.
Then Nadia arrived. Most people who read this will already know about Nadia's first week spent in the hospital, her week at home, and then the next four in the hospital again. It damaged me.
Once we had been home for a couple of weeks after all of that, and Nadia was eating and drinking properly and consistently, I finally broke. I'd just finished feeding and burping her, and she was so tiny. So, so small. Nadia fell asleep in my arms, I kept her upright for another twenty minutes to help keep her from throwing up (necessary for her at the time), and then took he to her room and put her in her inclined rocking bed. She stretched her arms over her head once and started snoring, and she looked very happy. No doctors were going to wake her up to take her blood. She had a blanket and a bed that felt like and smelled like home. When she did wake, she would be taken out of the bed and cuddled with and smiled at, not tested and stabbed and mourned. I watched her for a few seconds and recognized how content she finally was, closed the door, and crumpled.
Two years later, when I put Nadia in her crib at night, I do not stare at her and feel gratitude for her continued presence. I don't cry out of relief that she stuck around and will stick around. I put her down, pull up the crib gate, and bolt from the room, hoping that she goes to and stays asleep, and if she wakes, I punch the air around me and curse enthusiastically and quietly.
This is how you know she's here to stay.
Then I go back in, pick her up, and enjoy some extra night time with my special little girl who can finally walk over over the place, and who loves to bring me things, and loves books, and loves her sister and mommy and daddy, and who just might know for sure that if she stays up after her sister goes to sleep, she gets to play with her parents without the sister getting in the way, and who just might be staying awake specifically for that reason.
Nadia is not the broken baby I met two years ago. She is a kid. Yes, she's different.
Jessica and I often wonder about what she looks like to other people. In the grocery store. At church. At...well, that's mostly the places we go. It's obvious that she makes some people uncomfortable. I never know why. During the pregnancy, when the genetic counselor told us that Nadia surely had DS, I was afraid that some of the drinking Jessica and I had done before knowing of the pregnancy may have caused it. That's not how DS happens, but it just shows how little I knew about it. I always wonder, when people get uncomfortable, what they know or don't know about DS.
Some of the others surprise us. People recognize that she has Down Syndrome and tell us about someone they know with DS, or someone they know who has a kid or a sibling with DS. Jessica and I glow when we see kids with DS in public. We want to hug them and talk to them. We've met other parents who feel the same.
Recently, the Down Syndrome Association of Middle Tennessee held an open house, and we took both girls to it. There were lots of people of different ages with Down Syndrome, and lots of families. We told Sofia ahead of time that we were going to a Down Syndrome party. When we were on the way home, she asked, "Where were the kids with Down Syndrome like Nadia?"
"They were everywhere, Sofia. You played with a bunch of them."
And they were all very different. Sometimes we forget that DS is a large part of Nadia, but it's not her entire existence. We were able to compare and contrast her behaviors and abilities with other kids and adults with DS, and it was great. Early on, it was a real battle for me to look at Nadia as a baby, and not as DOWN SYNDROME. As the months passed, and she started to show a personality, I started to better appreciate her individuality in and out of her genetics. As the years passed, the question of how much of Nadia is Nadia and how much of Nadia is an extra chromosome became bigger in my mind.
The DSAMT open house showed me fully and for the first time that there is a Nadia that will exist apart from her parents, and largely apart from her extra chromosome, and largely because of it. You need to understand that there is a difference between intellectualizing such a thing and realizing it. It showed me that there is a world that she fits into all by herself, and that I am on the periphery of. It showed me more fully that there are armies of people who are making it their job in this world to make living with DS something manageable and beneficial, instead of scary.
There has been no better time in human history to be a person with Down Syndrome. We have better science which tells us what people with DS can do, when they can do it, and when to expect it and work for it, and when not to. There are resources provided by taxpayers which help working families to learn about their loved ones with DS in order to better love them, serve them, and teach them how to move in a world that is like them and unlike them. There are organizations funded through donations like DSAMT which help families get together and share information and strategies, and to help each other understand just what it is to love someone with DS. There is the internet, where you are reading this, and where Jessica and I learn the most about what questions to ask and who to talk to when we need to know something.
Again, though, that's all mostly about me and how I feel about Nadia. Nadia doesn't know that she has Down Syndrome. Nadia just wants to stand up on the couch and get scolded, eat too many Cheerios at a time, purposely spill her milk so that she can splash her hand in it, hug everyone she meets, wave to everyone in the grocery store, bruise her sister's head with a wooden school bus, scare the dog, dance in circles, read books upside down, turn the books over, point and babble, throw fits when her therapists want her to work, run away with the remote control, tackle her sister, sit in her daddy's lap, scowl at her cousin, watch television, remind Daddy to reattach the cabinet locks, scream when she wants something, clap to Daddy's music, get nervous when we go to the hospital for anything at all, ride in the car, disrupt everyone's sleep, and just be a kid.
And she's really, really good at it.
She's not a condition. She's behind typical kids on a lot of stuff, sure, but she's not a condition. She is a little monster, just like most kids I have known, and I'm so glad she's two, and I can't wait for her to be able to explain who she is to me. She'll make it to three if she stops standing up on the couch.
Sunday, February 10, 2013
From the front side of the car appeared a three-legged chihuahua, hopping away from the scene and looking back at the car as if offended. I pointed him out to Sofia.
"He need be more careful," she said
"I agree, Sof. He needs to go home."
The three men standing at the end of the driveway closest to the chihuahua seemed amused. I wondered if the chihuahua was theirs. That house has been for sale several times since 2005, and there is currently a for sale sign in the yard again. I think it's been a year since the last time it sold. I wondered if they were the types to be amused that their dog causes traffic accidents. I wonder lots of things when a house gets sold and bought so regularly, because I'm a jerk.
The Three Peaches crossed the street to get to the playground. This brought us within several feet of the chihuahua. I looked at him sympathetically.
"You should go home, buddy," I said with as much worry in my voice as I felt for the poor thing.
I strolled the girls another five feet before he ran up behind me and bit me on the leg.
I spun around. "HEY! WHAT THE HELL IS WRONG WITH YOU?"
He just stood there and stared at me, as if asking me the same thing. It was a chihuahua bite on jeans, so I was fine. The men in the driveway laughed. I started to walk away, then turned my head and saw him running up to me again. I spun back around and attempted to show him how to fly, using my foot. He got the point and backed away.
Laughter again from the driveway. "KICK 'IM!"
I walked five more feet and turned to catch him still following. I put the breaks on the stroller and turned and stared. The dog stopped and changed his mind.
"What you doing, Daddy?"
"Whoopin' this dog's ass, maybe. I'm not sure yet."
We made it to the playground without any more incidents. Then there was an incident on the playground when I didn't do a very good job of keeping Sofia from falling from the rope ladder. To be fair, she didn't do a very good job of following my advice on how to not fall from a rope ladder. She takes after her daddy, who fell fifteen feet out of a treehouse after not following directions. I kept an eye out for the chihuahua the whole time.
We loaded back into the stroller as the elementary school bus was coming down the street. At the intersection of Chihuahua and My Leg the bus let off a couple of kids who got into cars with waiting parents. The Three Peaches were walking up the hill when one of the cars that had taken off backed up and honked at us. The mother rolled down her window and shouted.
"The bus was going directly to kids' houses because there's a pitbull loose in the neighborhood."
"Oh wow! Thanks!"
We kept walking up the hill. The lady looked at me like something was wrong with me. I'm not sure what she thought I was supposed to do. I was trying to get home as quickly as I could. There aren't any designated dog attack shelters in our neighborhood. Obviously.
I explained to Sofia that there was a potentially dangerous dog on the loose. She got confused for a moment, since she'd already seen a dangerous dog. "No, a much bigger one, Sofia. One that would hurt a lot more if it bit us."
Once we got home, I started loading the girls directly in the van so that we could go to the grocery store. Sofia was dragging her heels.
"SOFIA, GET IN THE CAR RIGHT NOW."
"Because a freaking dog is going to eat you if you don't."
At this point I feel it's important to point out that I don't buy into the myths of inherently dangerous breeds of dogs. However, any strange dog is a potential threat in my mind, and is normally treated as doubly so when I have my daughters. The chihuahua caught me slipping because it's a chihuahua. And because it's missing a leg. And probably because it appeared to have cognitive delays.
We got in the car and drove to the store. Sofia and I talked about the dogs running around in the neighborhood, which is an occasional problem.
"You know, Sof, if I was that chihuahua, and I only had three legs, I would be much more careful. I wouldn't run around in the street, for sure. I would say, 'Hey, if I lose any more legs, I'm not going to be able to walk.' Yeah, if dogs have three legs they can walk, but if they have only two legs or one leg, they can't walk at all."
"Daddy, what if they only have zero legs?"
"Then they just lay there, I guess. That would be terrible, right?"
"DADDY IF A DOG HAVE ZERO LEGS THEY WOULD LOOK LIKE A BOAT."
Jessica says this is more evidence that Sofia has my sense of humor. I think it's more evidence that we are both inherently absurd, since she wasn't trying to be funny. Sofia does say the Doggie Boat Joke sometimes now, though, because she knows it makes Mommy laugh.
The night of the attempted chihuahua punting, I told the story to Jessica. When I got to the part where the dog bit me, she said, "Did it bite you because you tried to kick it?"
I lost my cool for a moment. There has been a pattern in the last few years of people putting me in this weird place where what I say is completely ignored and subservient to the dominant narrative that I'm an extraordinarily awful person. Apparently Jessica thinks I am someone who attempts to kick homeless three-legged chihuahuas BEFORE they bite me and attempt to bite me a second time. This is immediately after Jessica heard the facts.
1. Poor doggie. You should go home.
2. Doggie bites me.
3. GO AWAY DOGGIE
4. Doggie schemes on biting me again
5. DOGGIE I AM GOING TO MAKE YOU FLY.
Once I argued that perspective, Jessica was still bothered that I was going to kick the dog.
I am not a natural dog kicker. However, I am okay with letting you all know that dogs get one chance with me. After that, I protect myself and my kids. If the offending dog looks like it will try again, I'm not giving it the benefit of a doubt.
The whole trip around the neighborhood has brought up an old memory, and that memory has prompted a serious review of my current stance on an intensely debated topic. More on that when I get the time.