Joel Update & the Hand of Providence

We all continue to do very well for the moment. Steve has started his new job and is getting into his hands on science unit. Joel has STILL not been hospitalized for anything. That is over 4 full months now. I know that PBD kids can have really good stretches between illness, but it still amazes me considering all our hospital time last spring and this fall.

On Tuesday our family got to meet a very wonderful lady who will be doing out of home respite for us. It went better than expected. This lady has a wonderful home, and is the foster mom to another special needs child who is obviously flourishing under her care. I will not mention names for privacy reasons, but this girl was very excited about Joel coming for visits and I know she will pour some loving down on him. The lady in question was obviously competent and even more familiar with the odd things that can get thrown at you with a kid like Joel than I had expected. (She is a nurse, but even nurses sometimes don't know) I was relieved when she totally understood about treating Joel's fever's right away because if they get to high they take FOREVER to respond to meds, she appears to have some experience with this sort of thing. And she took me at my word when I said that he was usually find after one dose of med, and did not need to be ill to have a fever. And she is practically outfitted like a hospital already, so there might be less packing for me.

On the whole, I was very surprised to find myself feeling comfortable with leaving Joel there for the day, believing that he would be very happy and well loved. And I think I might even become comfortable enough to eventually leave him there overnight. We'll see.

I think Joel's eyes might be getting better. We are currently on some antibiotics to try and clear them up. It's a funny story. I brought him in to the hematologist for blood work and a check up. The hematologist was very concerned about Joel's eyes. So he phoned the eye doctor for me and spoke to him. To make a very long story (trust me) short, I came away with a prescription for some antibiotics. The part that is funny is that the hematologist knows nothing about eyes and didn't even look at Joel's lids. The part that concerned him was the part the eye doctor had said not to worry about! The part that was concerning me was that I had recently seen some redness and swelling under his lids and along the eyelid edges, which is what I think the eye doctor had said was sign of a sty and not "just" a chalazion. That's my take, anyway.

I had been planning to take another photo, of the inner lid/edge of the eye lid to send to my eye doctor. I just hadn't gotten to it yet. These things take a surprising amount of energy and planning. Joel has to be awake and ok with letting me hold his eye lid. I need to have the camera ready. I will need to take about 10 pictures to get all the lighting and etc. right to properly show what I'm talking about. I need to get the time to upload it to the computer, write my message and attach the pic and send it. Does this sound easy or simple to YOU?? (Say NO, make me feel better. ;) )

Unknown to me, though, the same day we were in for our hematology appointment, my eye doctor was getting ready to board a plane for a three week vacation. Which would have made contacting him about Joel's eyes even more difficult and would have meant that after a lengthy process of discovering why he was not responding, and etc, I would have had to deal with an entirely new doctor. Ugh!

And here is where I mention the hand of providence. Because where some people see coincidence, I see the work of God. My hematologist actually caught my eye doctor at the airport!! And fortunately he spoke to him, and then to the eye doctor taking over for him, on my behalf. And we DIDN'T need a separate trip in, confusion with the receptionist, the rigmarole of taking a picture or any lengthy explanations, we just got a prescription. WOW.

Through all of this, I continue to be amazed at how God has taken care of us. Just recently it is with us having a terrific case worker who found us a wonderful out of home respite person. And working out this whole eye doctor thing. But there have been so, so, so many other things. I am amazed and awed many times. Above all, I feel God's love in and through it all. Again, yes, it is terribly hard, seeing my son slowly decline. None of that goes away.

But even in that horrible circumstance, God is showing us His love and care. I see it on an almost daily basis. It blows me away. It reminds me of a verse "If we are faithless, He remains faithful; He cannot deny Himself." Even when I am faithless, God remains faithful, because He is faithfulness PERSONIFIED. He cannot deny who HE IS. And so God's grace, His UNMERITED favor, blows me away.

And it does something else. It helps take away some of my fear about the day when Joel will die. It helps me feel more trust about how we will get through it all. No matter how hard it is, or how our reactions might show faithlessness, I know that God will remain faithful. I can trust Him to get us through this. Not without pain, or suffering. But I can trust His love to keep us whole.