28 days

Tomorrow marks four weeks since Adam's diagnosis of leukaemia, a very long four weeks of our lives. When I say "our", I mean the whole community of friends and family that have cheerfully and readily inserted themselves behind, beside and before us in this journey. We are grateful for you all.

Still, the road is long and it feels like a dark tunnel, especially when tonight, as we have dreaded, Adam has had to go back into hospital for fluids because he is dehydrated. The chemo is beginning to take its toll on his poor little body, leaving him with no energy--the usually mega-energetic boy is not even wanting to walk from his bedroom to the front room, let alone any of his favourite parks or places nearby. He just lays around all day, which, if you know Adam, is a sad thing to behold. The extra drug they added in to his treatment regimen has shredded up his mouth and stomach so he wasn't really eating or drinking the last day or two, thus the waste products have built up in his blood and he needs some IV fluids to set him straight. We had hoped this would be a quick, overnight stay and then back home, but it seems that too is not to be.

The incision where the docs put the port into his chest has started to open up a bit, and while it's not obviously infected it does need to be seen by the surgeons. Finding a surgeon on a Friday night is probably not a quick process, nor is the IV antibiotics that he now needs to make sure an infection does not crop up at the site. So now we're looking at being in hospital at least over the weekend, if not longer. Once again Adam's grandma has been called in to stay with him, and again we are so grateful for her presence and willingness to be there.

I can't get the thought out of my head that our whole family seems to be being torn apart, and my heart aches at how quiet the house is. If I'm really honest, I'm angry at the whole thing, that so much is happening that we can't predict or avoid and the huge, overwhelming amount of effort that goes into dealing with it all. As one mom I spoke to today said--who is herself a model of the seasoned soldier, dealing with this kind of stuff for far longer than I have done--you feel like you just get on top of one thing for another to crop up and need dealing with. It leaves you feeling helpless and hopeless and drained. No matter how much support you have, you still think "how am I going to deal with all this??" And the answer we agreed: You just do.

But I don't want to deal with it!! I just want our normal life back, and yet, as I reminded myself in the quiet tonight, that is not our reality. Our reality is leukaemia now, and all the crap, dreaded or predicted or otherwise that goes along with it. Watching Adam shake and cry and still soldier on himself is little comfort--we must press on for him and for the hope of a leukaemia-free future.

I read Caleb a story tonight from his story Bible, just one I happened to flip to, about the Israelites in the wilderness, crying out for relief from their suffering even though they finally had their freedom. When they were hungry God sent food (and He sent a good friend with food to feed us tonight too)...He took care of them. And yet they cried and protested...hmm, feels a little too familiar to me. The challenge is clear: can I see God protecting and guiding us through this whole ordeal? Because if I can't the obvious alternative is to see nothing in this at all except pain and evil. It is definitely painful and evil, that much is true. And my voice is so weak and my eyes definitely not lifted to the heavens but staring down at my weary feet when I cry out, but if I don't...I guess the answer is that I don't want that alternative. I don't want all this AND emptiness. I will keep lifting up my voice (if not my eyes) to the heavens and praying for strength and faith because I have to. I have to.

And we thank those who pray for us and for Adam, lifting what we can't right now.

One short p.s.: On the bright side, Adam's blood counts are doing good and there is no infection, despite Caleb having a fever all week. The final hurdle remains on Monday--the bone marrow test where they look to see if he's in remission. Will update again then...

Why Can't I Learn?

Today I had some friends over for dinner, to keep me and the kids company since Brian is away (just for the day). It was a great idea, and I really love the ideas of hospitality and community in general, but inevitably somewhere along the way I begin to regret the decision as Adam begins to express his Adam-ness in the midst of the chaos.

Why is it that I never learn my lesson? When I change the routine at all, let alone bring new people into that changed routine, Adam is going to go wild. He will throw things, push children, spill drinks, lash out, cry when disciplined and in general occupy all of my time and brain space. I know this will happen, and I still do it.

I go through the same stages of grief every time--anger and disappointment that Adam acts the way he does, guilt for being angry with him, back to anger that he never learns no matter how "well" I try to teach him, back to guilt that I never try hard enough to teach him well...now that I think about it, there are really ever only two stages of grief in my experience with Adam!

In part it's for my own sanity, to have other adults around to talk to. I also want Adam to learn to be with other people well, and there is only one way to do that. I know that Caleb and Agnes and I need a life and need to be with other people, and so does Adam. In theory it will help me through a difficult night, though in practice the night becomes more difficult at the same time. I feel isolated enough in my life with Adam that sometimes it's my breath of air to break out of the mold...but it's not really relaxing that I have to gulp that air quickly while chasing Adam around and shouting at him is it?

I guess if I could learn anything it would be how to react better, how to help Adam along and not sweat the inconvenient cups of apple juice on the floor or friend's child crying in the corner, rubbing his head where the toy car just bounced off of it. Tonight I at least learned that strapping him into his chair for dinner a few minutes early saved me a few minutes of stress. I learned that I still at some levels don't know Adam at all, and that bothers me enough to keep trying, even if it means engaging in nights like tonight to see where we are at.

Though it will be a few months until the next one, I assure you.

There's SNOW place like home!

Aberdeen and most of Scotland have been blanketed by an early winter snowfall over the last few days. This early frosty weather has caused travel and school transport chaos big time, but also has created opportunities for winter snow play to make the long weekend enjoyable (the kids are off school Monday and Tuesday for inservice days). We all pulled out our snow boots, woolly socks, long underwear, and waterproof gear and headed outside to play.

As you can see, Caleb also needed his Ben 10 goggles to keep the snow out of his eyes! Perfect for when a car drove past him and splashed dirty, salty water into his eyes, only he didn't have them on then! But now he won't take them off....

We had friends from Baytown visiting with us last week, Shawn and Sarah Aghajan, and they too got to experience first hand the trouble caused when a few inches of snow drop out of the sky. Caleb and I took them to see Dunottar castle about 13 miles south of Aberdeen, but the snow was so bad that getting there was dodgy, the path down to the castle not terribly safe, and the castle itself was closed! In the end we had a lovely lunch in Stonehaven and took pics from a safe distance...

Yes, Shawn messed that one up! (just kidding Shawn!) It was an amazing time for pictures, as the sun shining down magnified the snow clouds over the North Sea in the background.

Yesterday was Sunday, and after church we had soup and then went outside with the requisite gear to do some sledding (well, three of us anyway). I'll try to add a video below of Adam and Brian sailing down the hill in front of our flat, with Caleb giving them the turbo boost push-off. The best part of the afternoon was Adam learning to throw snowballs--he loved the whole idea, even getting them thrown at him! His chuckles made frozen fingers and ice up the nose worth it all! And let me tell you, with the arm he's got, he'll soon be a force to reckon with!

That's all for now. Enjoy whatever weather you have...we're going outside!

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.

A really good article

A friend of mine/ours named Amy Julia Becker has written a post for NYTimes.com. 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.

Friends for the Journey

"Hey, I know someone you might like to talk to."

I regularly experience someone I know saying this or something like it and making the connection for me with another person. It's always interesting to me why this happens, what drives that networking impulse we have. Obviously some point of possible connection stands out--a love of a certain sport, or a cultural background, field of work, or unique characteristic ("You should meet Mike...he's also got really big feet!") As humans we like similarity--we look for the things in other people that we can resonate with, either things about ourselves or things we like or dislike. These commonalities provide us with some sort of bedrock from which to build the relationship.

For us, however, it's a slightly different motivation to make a connection. I never have someone say "My friend Helen's son likes Thomas the Tank Engine too, you should talk to her!" The predominant reason why anyone suggests a friend or connection for Brian or I is that they know someone who has a child with either Down Syndrome or Autism (or both) and that is our point of commonality.

Why do this, though? Why suggest that just because our children both have an extra 21st chromosome or behavioural difficulties we might be friends? I think the reason is the recognition that we all need friends for our journey, and that on this particular journey for Brian and I and Adam and Caleb, we can use all the friends and support we can find.

It is not so much that our kids are the same, because that is also not true. Just because a child has Down's or Autism doesn't mean they will be anything alike at all. But our journey will still be similar in its trials and speed bumps--waiting for physical development, hoping for words to come out, trying to find resources, lamenting educational obstacles, etc. And this journey is one that is noticeably difficult, like being a foreigner in a land where you don't know anyone or speak the language. I do occasionally feel like that foreigner with Adam and our life, and I very much appreciate the friends along the way who I've met or been introduced to who help me struggle on.

Thanks, friends.