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.

Friday, July 15, 2011

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...


Allison said...

Thank you for the update and for being so honest. I have been praying for your family and especially Adam's healing. Much love, Allison

Rachel said...

Praying for your family and esp. Adam during this time. Wish I could bring you a meal too. Much love and prayers, Rachel

Amie V said...

i know i'm really behind on commenting, but i've been praying for y'all all this time (and will keep on, of course). this post brought tears to my eyes, as well, because i can definitely share in those feelings (though for different reasons, obviously). love y'all lots. just sayin'. =)

and, funny enough, i just noticed the little word verification thingy i have to type in is quite appropriate in a few ways: it's 'wings'. =D