Ups and downs

Haven't had much time to post, but as a way of a quick update on how Krassi's doing, we're in the middle of a low week. After three weeks of a honeymoon of sorts after coming home, he's more or less alternated between good weeks and rough weeks. Last week we had some really sweet moments, and those were all the more precious coming after a week when it sure seemed like he really didn't like me at all. (I am, after all, not only the one who feeds him and massages his feet and snuggles him into bed at night (which, by the way, is not really his favorite thing. He tolerates it MUCH better than he did, but it's still awfully close for him), but I'm also the one who puts on his AFOs and encourages him to stand and sit properly in them, the one who brushes and flosses his teeth, and the terrible ogre who bandages up his cracked finger every night before bed so it has a chance to heal. And when I talk about a bandage, I mean a serious two-bandaid, three-layers-of-waterproof-tape-so-he's-wrapped-from-the-tip-of-his-finger-down-to-where-it-meets-his-hand kind of bandage so that 75% of the time he can't get it off by morning. I'm the one who works on stretching his inner thigh muscles knowing that if he has any articular cartiledge left that they're going to want to do surgery to replace his hip joints, and that will likely require muscle relaxants so those inner thighs don't pull them right back out of joint, and I don't want to see him on any more of those than are necessary knowing the impact it will have on his overall ability to use his muscles...)

This week, though, is the first where eating has been a struggle for him. It's a challenge to know how much I should push to get some food into him, how much I should cater to what he likes (applesauce usually goes down okay, but is not the highest in overall nutritional value), and how much do I simply back off and wait until it's not an issue? Or does he need some pushing from me to learn to be accustomed to what it means to have a feeling of being fed instead of living day in and day out for years with the ache of hunger until that becomes "normal" and anything else is difficult?

During the rough weeks we see periods of unexplained (by immediate circumstances, but likely many possible explanations if one considers his trauma-filled past) distress. Sometimes its simply low-grade whimpering, sometimes full out tears. And there is often nothing we can do at those times that visibly provides any comfort to him. In fact, it sometimes seems as though comfort in itself is distressing because it is unfamiliar.

So do we leave him to the comfort of the familiar? Or guide him through the challenge of learning a new frame of reference? And, knowing already that we have chosen to remove him from the "comfort" of his familiar, knowing how very bad that familiar was, how do we best walk this child through the process of re-learning everything he's ever known to be true??

As I skim back over these words, I realize that at the surface they sound hopeless. But that is not what it lives like here. Impossible for me to figure out? Yes. Impossible, likely, for anyone (even Krassi!) to figure out? Yes!! But this is the life God has laid out for us, so we will walk it day by day, moment by moment. "Whatever he tells you to do, do it!" (John 2:5) "Work, because God is with you." (Haggai 2:4 - from our sermon this morning) "Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go." (Joshua 1:9 - from Sunday School this morning.) These little blips hardly do justice to any one of these passages (which can just as easily be taken out of context as the one I shared last night!) but hopefully give a sampling of how we are being strengthened to take on the bigger-than-we-are task that is before us.