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...

Holidays again

One begins to wonder when the Brits get any work done for all the holidays they have!! Here we are again, that time of year when the potatoes used to get picked by school children, so they would be given two weeks off in October for the "Tattie Holidays". Trouble is that now school children just hang around the house with nothing to do for two weeks in terrible weather, so the Tattie holidays only succeed in messing up our lives. Can you tell I am not fond of this time of year?

At any rate, the boys and I have plowed into our two week purgatory with high hopes, taking walks, eating hamburgers, and trying to get some things done now and again with our days "off". Adam is not in a happy-to-stay-at-home phase so we're forced out a lot, and the rain the last two days has not helped. But we are nearing the end of our first week and still smiling. A little.

Honestly, holidays are the most psychologically depressing time for me. They are the days and weeks when I really see and feel just how different Adam is from other children, and how much is not available to us that others have at their disposal. Quite honestly, I get very jealous. I see other friends who stay at home and watch movies with their children on rainy days, or bake cookies, or paint pictures, or read stories. I see Caleb who would love to do all that, and then I see Adam who would start throwing things out the utility room window (like my courgettes!) and break all the paintbrushes, etc. I see the gap that lies between the life I would like to lead and the life that is mine, and it's all I can do to pray that the Lord would grant me a little bit of hope, that He would grant Adam a little bit more development, that He would grant us all a little bit more patience and humour with each other.

It's not easy, and I often struggle to find the balance between leaving enough space for us to experience each other and planning so much that the house of cards crumbles. Today I lost the plot because I had forgotten one thing that led to the collapse of another thing. And stress, and rushing around. All totally not helpful to someone who is wanting to learn to just be. I do pray every night that I would be forgiven for my terrible behaviour of the day, and be loving and gentle toward my children the next day. But I pray that every night. So maybe either what I'm praying for is not quite right, or my standards are too high? I actually did think today, "you know what? Tomorrow I'm going to shout at the boys at least once, just like I do every day. So let's pray for something else tonight, ok?" Maybe that something else would be the ability to accept the gifts that are right in front of me, instead of wishing for those that I think would be better. I'll let you know how that one goes.

Healing for Adam?

I am doubtful even as I write this that I know at all what I want to express. A friend sent me a link to a Facebook page called Healing for Autism. I read through the whole thing, which is not short as it is full of testimonials. Pretty amazing stuff, really. Usually I have my reservations about something like this even before I've read about it, but I couldn't find any reason to dislike what I read on this page. How can we not rejoice in someone praying for healing and being healed?!

To be honest though, a bunch of emotions come to the surface when I see something like this. Quite honestly jealousy, frustration, longing, hope, faith, hopelessness, doubt...it all blends together. I have prayed for Adam, but have I not prayed right? Is he not meant to be "healed", or have we just not prayed enough for his healing to occur? To go back a few steps, what am I asking him to be healed of, and is that really something I should be asking? Is Autism really a "prison", to use this mom's words in the Facebook article, or is it just another aspect of the human condition that can and does reflect God's face? Is Autism an affliction to be rid of, or part of who Adam was and is meant to be?

While I don't necessarily have any answers, I do think that committing to pray for our children and their particular "afflictions" or "prisons" is meaningful, and I will do it. I will also be sure to relate any healing here. Actually, speaking of healing and with regard to a former post (see Bowen Clinic), Adam had his first visit to an alternative therapy here in Aberdeen called the Bowen Clinic, at which visit the woman asked what specific issues Adam has. I related that he is often congested and it's his right nostril that usually runs constantly when he has a cold. She pressed her thumb to his face on the right side a few times (and only a few as Adam did the duck and dodge manoeuvre), but ever since then his nose has been clear. And I'm not kidding--not once has he had the same discharge from that nostril, not since that day. So where does that fit in with the healing and prayer discussion? I can't say, but I'll have to come back to it another time.

Caleb's prayer

Caleb took me by surprise tonight at dinner. Out of the blue he asked to say the prayer, and I thought he meant to sing the song we usually sing. But no, he launched off into a very solemn series of thanks for various things--the toys that Oma and Opa had given him for his birthday (two months ago!), the sunshine, swimming that afternoon, Daddy coming home on the train later that night. At the end of his list he punctuated his prayer with a sweet "ah-men", very professional. When I asked him who he was praying to, though, he said "Oma and Opa", so we had to clarify a few details during the meal!

This might not be news for many kids Caleb's age but I had never heard him pray before. We have prayed together a few times, but it was me doing the praying and not him. I know that Caleb is a listener, and this was a sweet and profound example of what he's been picking up. I wish all his examples were that sweet! :)

At any rate, he could also have thanked God for the sun and wind down at the beach today, and for not getting wet when that big wave rolled in! He could have thanked God that Mommy kept her temper (for the most part) when he and brother were a right handful in church. He could have thanked God for the car that drives us all over town to do fun things. But I do like that those things are just part of his happy life and don't always need special recognition. I like that God is in the details naturally...that is a great thing for anyone to learn.