Friday, March 29, 2013

2013-03-29 Making Eggs (photos and videos)

I'm really glad that Sofia and Nadia have Jessica, because they love this stuff, and I would never do it without Jessica. I enjoy it when we do it, but still. Jessica pushes for it, not me. The girls will have lots of fun memories that wouldn't take place without Jessica.

Friday, March 22, 2013

03.22.2012 Nadia's Birthday and Down Syndrome Awareness Day

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.