Snapshots

Snapshot 1: Lucy shows her personality. Or, as we call it, Lucy reaches for the iPhone. By far her favourite playthings are the phones (home phone or anyone's cell phone she can get her hands on) and the remote controls. I confess that I have given her the remote for the radio (which lives in the kitchen) to satisfy her lust
for power without actually enabling her to change the channel or disrupt the DVD. (In fact I hadn't been talking on the phone or even sending a text message: I had the phone in Lucy's general vicinity in order to record for posterity the extent of the couscous-scattering. She's world-class, and comes second--narrowly--after Iain, the champion scatterer.)

Snapshot 2: Big brother and the (soccer or foot-) ball. Thomas was watching Lucy outside; I was about to scold him for picking her up, when I saw what he was doing. He had only carried her as far as the lawn, and only in order to get a ball so that they could play with it. Lucy was thrilled. Suddenly it didn't matter so much that the house was a mess and the washing machine constantly running. This was one of those moments I dreamed about when I daydreamed about what having kids would be like. I dropped what I was doing and went to take photos.

Snapshot 3: Iain, taking a photograph with my iPhone. Photographed by Thomas, who was using my iPad. What more could I possibly say...except that I didn't give permission to either of them, and only discovered the incident as it appeared in my photo stream. So this is what they do when I'm not looking. Could be worse, much worse, couldn't it?

 
 
 
 

Chicken pox

 

I meant to take Lucy to a pediatrician in the US while we were there in April, to have the varicella (chicken pox) vaccine that the others had at age 1. But we were busy playing at the beach, seeing family (just yesterday Iain asked if we could go back and see his cousins), and going to Disneyland (thanks, Nick & Carmen). So Lucy has chicken pox. I am not at the meeting today; I won't be at the meeting tomorrow. Oh, well.

Lucy, on the other hand, thinks having a bath in the middle of the day is great.

Two Sundays

 

This was Sunday, the 10th of June. Fortunately Anna stayed clean and dry on the 17th in her first Holy Communion whites. The same cannot be said for Thomas, however, who took the opportunity of having friends round as a sign that it was time to play football. So much for that new, brilliant-white shirt.
 

 
 
 

a free ride

Today had nothing to recommend it, really. A morning full of marking (grading) and shuffling paper in my office, followed by a doctor's appointment of a routine but unpleasant nature. My only consolation was not having to take the car. I love the feeling of freedom I get from the knowledge that I can get where I need to go without worrying about car keys, parking, or traffic. I can't explain it, but it's a great feeling--like the first day of summer vacation when I was 12.

And the day unfolded pretty much as you'd expect. So dull I won't bore you with the details. The only exceptional thing was the astounding find of a pair of jeans at a charity shop on the way to the bus station. The ones I bought for about $5 at the Goodwill store on LaVista road in Tucker had just worn a hole in the knee, after doing great service these five years or so.

The doctor's office is in Meadowfield, a few miles from Bearpark, where we live. So I planned to catch the bus to the crossroads, where it would continue to Durham and I would head into Bearpark on foot. I hopped on the bus and asked for Neville's cross. The bus driver shook his head. 'I'm not going into Durham, pet,' he said, and the handful of older passengers looked at me with a mixture of amusement and compassion. Just as this exchange was taking place, another bus passed us. 'That's the one you want,' he said, smiling. 'You stay right there; I'll catch him for you.' So I sat down as he pulled out after the 49a, the one I wanted. He did, in fact, catch it at the next stop, and the bus ahead stopped just for me.

I thanked the bus drivers both, enthusiastically. Between them, they made my day: I rode a few blocks for free, and caught the bus I needed. It's true that I then walked the rest of the way home (about a 30 minute walk) in the wrong shoes, and in the rain. But I did it with a smile on my face.

The victors

Thomas played in a tournament this week, with a team selected by his teacher. They won:

Thomas wrote a little piece for the school newsletter describing their success. He mentioned the goal scores (of which there were four) and named the most valuable players in the tournament (not surprisingly, the same four). His team won every game without allowing the other team to score. Thomas' account: the defense was good, they did their job.

And Thomas? He played in goal. That's my boy.

Little feet

Well, she's a year old now. Those lovely little feet are still pristine, though: she doesn't yet use them for walking. All in due time, I know. For now, we're just enjoying the calm before the storm.

And, of corse, those beautiful little feet.

Just Anna

So, I have been reading posts and bogs, here and there, on the topic of special needs kids and their families. I liked this photo:

 
I have one of those--a child with Down Syndrome who survived Roe v Wade. Although I don't see myself marching on Washington, DC anytime soon, Anna certainly changed mymind about Roe v Wade. When I was in college, I thought abortion was morally wrong, but I wasn't sure it should be illegal. Now I wish there were some greater measure of protection for babies with Down Syndrome. I had an amazing time a few weeks ago with some 17- and 18-year-olds from Catholic secondary schools around Durham. Their utter disbelief at this statistic was beautiful. And, when confronted with the question whether they would hope for a baby with fix-able heart defect with a strong probability of Down Syndrome or a baby with a heart defect that proved fatal in more than 50% of cases, they overwhelmingly chose the former. (It took me several weeks to get there in the summer of 2001.) One young woman explained her reasoning: the person with the extra chromosome is still a person, after all. She should have a chance to live.
 
A couple of blog posts I read suggested that special needs parents often feel alone. Thinking back over the last decade, I see times when that described my situation perfectly. Dealing with problems with nursing early on, the first heart surgery at 4 months of age, delays in development and ongoing health challenges set us apart somewhat. When people said, 'I don't know how you do it,' my response was (and is): I never knew anything else; she was our first child, and we just did what we needed to do, like every other parent! I can't explain why I feel less alone now--whether it is knowing that I know plenty of people (mostly friends from school, whom I keep up with now on facebook) who are walking a very similar path, or the parish and community I have here in Durham. (It's probably both those things, and a double measure of grace.) For the honesty of all those who post about their struggles, however obliquely, I am grateful. I know I am not alone.
 
 
It's true that we are tired--though that is as much to do with a typically developing 1-year-old who doesn't sleep at night as it is to do with the challenges of raising a special needs child. Ditto for the cost of child care. Life is complicated, busy, expensive and exhausting, but it is good. No doubt about that. In one of the blog posts by Maria Lin (click the link above), she praises cultures that regard special needs children as a blessing, here to teach more than to learn. Anna has a lot to learn, to be sure--I expect her to learn to read, tie her shoes and count to 100, among other things, when she's ready. But she's definitely teaching us--me especially--to be patient, and to appreciate the right things.
 
But I don't normally think about that too much (grateful as I am for having been reminded); I just see Anna.