The Adoration of the Christ Child

The Adoration of the Christ Child
See if you can spot why I like this image

Everything in its Right Place

A blog about disability, life, parenting, and learning what it means to live well in this world.

Thursday, September 23, 2010

The comments keep coming

If any of you looked at the last post that I referenced, written by my friend Amy Julia Becker, you should have a look at her most recent post. You can click there or on the link on the right. It's worth looking at to see, written in black and white, some of the horrible things that people say about "those children." And Amy Julia's surprisingly calm and thoughtful response to it all.

The comments she quotes might surprise some of you, sadden or pain you, but they have been heard by all parents of disabled children. Yes, even me. I said in my comment to her that one time a mom, a nice, upstanding, middle-class mother, said to me in the park "I could never have one of those", referring to my Adam. She wasn't being malicious, she was being both honest and completely transparent in her ignorance. She is probably a person who has never had anything go wrong in her whole life, so why should she start by welcoming a defective child into her life?

I get it, that we humans like choice, we like getting things right and things going right in our lives. We have emotions and thoughts that are occasionally painful to others or painfully stupid, and sometimes we let those loose on the world. It doesn't bother me, because I am happy with my choices and with our family. But...

I still can't figure out the but. There is definitely a but there...maybe it's that protective impulse to want people not to say or think those things because someday Adam may learn of it. I guess also it's a desire to want people to at least be willing to see more, to be open to more. To consider for one minute that a child with Downs, or cerebral palsy, or Edward Syndrome is just as wonderful a gift to welcome as any "normal" child. I want people to see that life is complex in its imperfection, and running away or trying to shield yourself from that imperfection just limits you from...well, life.

I'm pretty sure you don't know what you can't do until you try/do it. But maybe that's just me. And no, just to set another myth on its tail, you don't need superhuman powers to raise a disabled child. You just need to do it, same as any other child. I'm not special because I'm caring for Adam, I'm special just like everyone else on this planet. And blessed because I'm caring for Adam.

Wednesday, September 22, 2010

A really good article

A friend of mine/ours named Amy Julia Becker has written a post for In it, and in a previous one, she talks about her experiences as a mom of a child with Down Syndrome. I'll have to look back for the link to the other article, but the link to her most recent one is here. My comment is number 64, but the wealth of viewpoints in all the comments is worth taking a look at if you have time.

Monday, September 13, 2010

Whirlwind (Whirlpool?)

It's been a rather full and quick few days, so I'll give you a rather brief and compact summary of it all!

Daddy came home Friday evening, safe and sound though late thanks to British Rail. The boys and I toured Union Square mall while we waited, making sure to exhaust all fun potential in the escalators and buy a birthday present from a local shop. When Daddy came out of the train all eyes were on him and his 75 pound bag (weight, not price!). Whenever he goes to Oxford to work with Mr Bernd he always takes a lot of books, and this trip was no exception. He still had room in his bag for some gifts for the boys, though--this time two hand puppets from an Oxford toy shop. Still haven't decided who is the mole and who is the fox, but they are sweet.

The boys then spent most of Saturday with Stevie, our angel from next door, while Mommy and Daddy did their workshop for Welcoming Church Forum. If you want to see what that's about, look here. Stevie took the boys to the beach where Adam had his first ever birthday party. I don't know how many people wait until their child is 7 for them to be invited to their first birthday party; needless to say it was a fun event for him and us. Sadly we couldn't be there, but Stevie told me all about it and it sounds like the kids (and Adam) had a blast. I would have been nervous about him, but it was a girl from his class with Down Syndrome, who I know for a fact is in love with Adam anyway, so I figured he was in good company! They all had a great time, and we had a lovely day on our end discussing issues of disability, worship, inclusion, belonging and growing as the Body of Christ with 18 people from around the city. Day well spent, four very tired people at the end of it!

Sunday, and a lovely church service and back into the groove of the swimming club. This time Daddy joined us, and by 5pm again we were all warm, tired, and ready for a pizza. What a quick weekend!

I'll have more this week on further developments in Adam's school and education experience. It is not great at the moment, for reasons Adam--bless his heart--cannot express to me but thankfully his teacher can. I am still trying to find the right way forward, the right people to talk to, and the courage to put up the fight that I suspect is coming. Pray for me, and for Adam, that we would be able to get him the support he needs to enjoy school and get as much out of it as possible.

Off to bed!

Wednesday, September 8, 2010

Drop that corset

I've just finished reading an excellent book called Unsqueezed: Springing free from skinny jeans, nose jobs, highlights and stilettos. This book is written by a friend of mine, Margot Starbuck, whom I met in Durham during our sabbatical year there. I knew she was writing a book on how women view their bodies, but I did not know exactly what to expect. After reading it, and after literally getting the chills during the Epilogue, I can easily and highly recommend it as a book that goes to great lengths to challenge our modern, self-focused and very destructive culture's ideas of beauty and self-worth.

The best part about it all is that Margot hasn't written a "how-to" book that simply turns a blind eye to issues we all face. She has linked our value and worth directly to knowing that God loves us and has already accepted us just as we are, and striving to love others both near and far as a means of reversing our tendency to navel-gaze.

The first step I've taken since finishing the book is to join the True Campaign that Margot mentions, which is a great resource for finding godly self-worth in community and has lots more ideas and resources available. Check it out--just click on the handy blue button to the right! I also haven't taken a shower in three days, but that's maybe a step beyond what most average people would attempt in their first week.

I do think this stuff is important, mostly because it goes so much farther than how much we eat or don't eat, or buy or don't buy, as Margot also discusses at length. How we view ourselves has a direct connection to how we view others. Control has become the most prized word in all Western women's vocabulary, and yet it's possibly the concept most subtly detrimental to real relationships--under the guise of being good stewards we are ultimately losing out on what it means to be with and for other people.

Trouble is, this includes our children at times. At the moment I have two boys, but I don't for the world think that my views of myself won't rub off on them in some way. And I hesitate to say it, but girls are way more dangerous and vulnerable to see themselves how their momma's see themselves. We have to be careful. I want to be careful, and that's why I want to join a community of others who also see poison in how the world has conceived beauty and worth.

I would love it if anyone else wanted to join me in this...maybe we could all read Unsqueezed again together? Maybe we could not shower together? (ok, just testing) Maybe we could just all agree to stick our tongues out together at a society that tells us we're not OK exactly as we are because it's just not true. It's not true at all.

Saturday, September 4, 2010

Cheesy recipe

While on the phone with my mom tonight, I mentioned that I had made a cheesecake yesterday that I was certain was the best one I'd ever made. Really. And I've eaten nearly half of it, so I am very clear on this point.

Not that anyone needs more recipes, what with all the dot-com resources available, but I will post it anyway for both posterity's sake and mom's. It's an American recipe made by someone who has been in Britain for 12 years. It might help those Americans who are cooking in Britain...might confuse those who are not.

Cheesecake recipe, amended from the Pillsbury Cookbook (c1989!):

2 cups biscuit crumbs (I used digestive biscuits, which turned out yummy)
1/2 cup butter, melted

Whizz the biscuits (aka cookies--British lingo, folks) in a food processor until fine. Melt butter and mix together. Press into non-greased 10-inch springform pan. Now, two things: first, I had to use a 9-inch pie plate, which worked fine. Also, I greased it before I read the whole recipe, so I cut a piece of baking parchment (aka wax paper) into a circle and pressed it into the bottom. I think this helped with cutting and serving.

3 eggs
2 x 300gram packages cream cheese (again, metric system makes things tricky. And don't use light cream cheese--I did before and that's why this one is better!)
1 cup caster sugar (fine sugar used for certain recipes, dissolves quicker)
2 teaspoons vanilla
1/4 teaspoon salt
1 x 300 gram package sour cream (if you are in the US, use slightly more than 1 cup. The original recipe calls for 3 cups, but this is absurd.)

In large bowl, beat the eggs, then add cream cheese, sugar, vanilla and salt, mixing well. My mixer packed in, so I used a wire whisk. Then add the sour cream and blend well. Pour into pan with crust and put into oven heated to 350 deg F (180 deg C). Important note: put a pan of water under the cheesecake as it's baking to avoid cracks in the top. Bake 60-70 minutes or until set. Mine was closer to 60.

Once baked, set aside to cool completely and store in fridge until ready to serve. I topped mine with store-bought summer fruit filling.


There, hope that makes someone else as happy as it made us. Too bad hubby's still away! :)

Thursday, September 2, 2010

Flying Solo

Brian is away for 10 days, so I'm going to pull the obligatory late night and write a little bit about the week. I just talked to him and he's doing fine, by the way--about to have the official book launch for his finally-published PhD thesis tomorrow evening. Funny how 15 years can seem like not such a big deal when you finally get to standing around with a glass of wine handing out signed copies, but then again I was only an observer!

So Adam's birthday was a good day--Sunday it was, and I still haven't downloaded the pictures (but I will)! We took a cake to church which was completely demolished. Either the Provost spoke extra long or it might have been a good cake after all. I say that because it was still a bit warm when I took the outer ring away and the whole thing sunk and splooged out in a very non-cake like form, but people still liked it which was good for me, bad for leftovers! Then we had lunch and took the boys swimming. A trip to the pool would not be complete for us without two things: Adam poops and we have to go change him in the middle of the swim, and Adam pushes a few kids off the jumping area who aren't expecting it and end up crying on their parents' shoulders. Both of these things happened. At least he usually picks the kids with very understanding parents--though someday I imagine I will end up with a black eye because of his "quirks." The boys were good enough to let me go sing with the choir in the evening, and had a nice "boy evening" themselves, so it was a great day all around.

The other major event of the week was Adam's trip to the dentist on Monday. I knew it would be bad, and having it immediately after school was not the best timing either. But that boy knew as soon as we walked in that he was going to have to do something he didn't want to do, and it was very nearly an ugly scene. I tried talking, cajoling, pleading, laughing, demonstrating and reprimanding: in the end I had to lay back in the chair with arms and legs enveloping my very strong now-7 year old and hold him down. The dentist helped, and after he realised that having a mirror in Adam's mouth was not a good idea, he carefully used his fingers and eyes to inspect Adam's teeth. He had 4.5 seconds to do this, while Adam was howling and before he broke out of my grasp. But not before he gave me another hernia and left the dentist and me sweating! I am pleased that our dentist is both young enough to manage the energy that Adam has/takes and nice enough not to curse us until we've left the building.

Luckily all looks well for now, but I know the dentist was thinking the same thing as me: what happens when he has to do some work?? Funny thing is, apparently Down's kids don't get decay as much but do get gum disease. Our only defence of course is brushing his teeth. A lot. At least Adam is a pro at brushing his teeth, something we (amazingly) have never had to fight over. Hopefully that will stave off problems for a long time. I guess we can add future dental work to the growing list of things that might require anaesthetic to carry out, but I plan to cross that bridge...later.

That's all for now--more (and more pictures) soon.