I was sitting down the other day thinking about Doug. My emotions on the subject kind of ebb and flow, and I was having a bit of a down day. No reason in particular, nothing new was happening, it just was one of those days. Those of you who have had them know what I mean.
So anyways, I was sitting there thinking to myself "I don't have enough strength to handle this". And in that quiet moment, I could hear what I presume was God's voice answering "No, you don't". (For the record, it sounded nothing like James Earl Jones) So I asked the obvious question - "How can I get more strength". You might be able to see where this is going, but I didn't. The words next in my head were "I can do everything through him who gives me strength". So, I asked for strength. And I still didn't feel I had strength to make it through what I was feeling. That's when I put 3 and 1 together to get 4[1]. I don't have enough strength to make it on my own. That's the whole point. On my own. If I rely on my own strength, I'm going to come up short, and it's going to be very messy. But I'm not on my own. I've got God on my side.
And that's where all of you have come in. We've got countless friends and family (and even aquaintances) who are praying for us, and who are doing little things here and there to make a difference in our lives. You guys are the hands of God reaching into our lives and supplying strength. Thanks.
[1] I was reminded by Gerry that when Shadrach, Meshach and Abednego were thrown into the furnace, God didn't give them the strength to just walk on out. He sent help right into the furnace with them. They weren't alone, and neither am I. [2]
[2] Is there some sort of rule about using footnotes in blogs?
Tuesday, June 14, 2005
Thursday, June 9, 2005
Home from the Hospital
Wow. What a day.
We didn't have to go in to the hospital for the biopsy at an unholy hour, we got to arrive at 11:30. This was good. I still wasn't 100% sure this was the right thing. The doctors all seem to agree that it is, and I can't think of a logical reason that it isn't, but my emotions still haven't quite settled down. At this point I know logically that it is logically the right thing to do, but my emotions haven't caught up. I need to be strong for my family though. Now is not a good time to show fear, kids can smell that sort of thing. (or was it dogs?)
We arrived on time, and were "checked in". Doug got a little gown (it's still wrong that they have to come in that size) and was weighed, thermometered, blood pressured, and stethescoped. All of which went over about as well as screendoors on a submarine. But he settled down. Then it was off to the waiting room. Lots of toys to play with, and Doug was having a pretty good time - which was another good thing, as surgery wasn't scheduled until 1:10. At about 12:15 or so, they started getting him ready for the anesthetic. They put some cream on his hands, covered them with bandages, and a little gauze glove, and then some tape. Again, this didn't go over well. But hey, it's only for an hour right?
Well, by the time 2:30 came around, we were getting pretty hungry. None of us had eaten since the night before, and there was no sign of our surgery call. Finally we hunted down a nurse who informed us we had been bumped - didn't anyone tell us? So we ran out (in shifts) to grab a bite to eat before we passed out on the floor. By now, Doug was pretty much done with the toys in the playroom, and was into exploring doorways and closets. Fortunately, he was ok with the wrappings on his hands by now. They had become his "Motorcycle Glubs".
Doug went in at 3:30, and while Allison was with him for the "putting under" (they use needles for that, and I didn't want to be the one passing out), I sat and thought. I was still waiting for that big voice in my head telling me that this was 100% the right thing to do. I've known for a long time that parents fake knowing the right thing on a lot of stuff, but I always thought that on the REALLY big stuff they knew what they were doing. I was waiting for that big James Earl Jones voice to tell me "Yes. You have done the right thing" or "Stop that scalpel NOW" or even "Luke, I am your father". Anything but silence. Instead I was left with a bunch of random thoughts, and a sense of being in a strange time warp. Here is where I think I was supposed to learn a lesson. If I were to have let go, and placed my worries at God's feet he would have gladly picked them up and carried them for me. Instead, I clung to them, trying to make sense of things out of my own mortal mind. I wonder how often I've done this without knowing it.
25 minutes later it was finished. Recovery went well, and he showed no signs of being sick from the drugs. The surgery went according to plan too - which was good. He is now at home, resting in bed after putting a pretty large dent in a big can of chicken noodle soup. He has even been running around a bit and climbing up furniture. Kids sure are resilient.
I've rambled a lot now, and I should probably stop while I still am making a semblence of sense.
We didn't have to go in to the hospital for the biopsy at an unholy hour, we got to arrive at 11:30. This was good. I still wasn't 100% sure this was the right thing. The doctors all seem to agree that it is, and I can't think of a logical reason that it isn't, but my emotions still haven't quite settled down. At this point I know logically that it is logically the right thing to do, but my emotions haven't caught up. I need to be strong for my family though. Now is not a good time to show fear, kids can smell that sort of thing. (or was it dogs?)
We arrived on time, and were "checked in". Doug got a little gown (it's still wrong that they have to come in that size) and was weighed, thermometered, blood pressured, and stethescoped. All of which went over about as well as screendoors on a submarine. But he settled down. Then it was off to the waiting room. Lots of toys to play with, and Doug was having a pretty good time - which was another good thing, as surgery wasn't scheduled until 1:10. At about 12:15 or so, they started getting him ready for the anesthetic. They put some cream on his hands, covered them with bandages, and a little gauze glove, and then some tape. Again, this didn't go over well. But hey, it's only for an hour right?
Well, by the time 2:30 came around, we were getting pretty hungry. None of us had eaten since the night before, and there was no sign of our surgery call. Finally we hunted down a nurse who informed us we had been bumped - didn't anyone tell us? So we ran out (in shifts) to grab a bite to eat before we passed out on the floor. By now, Doug was pretty much done with the toys in the playroom, and was into exploring doorways and closets. Fortunately, he was ok with the wrappings on his hands by now. They had become his "Motorcycle Glubs".
Doug went in at 3:30, and while Allison was with him for the "putting under" (they use needles for that, and I didn't want to be the one passing out), I sat and thought. I was still waiting for that big voice in my head telling me that this was 100% the right thing to do. I've known for a long time that parents fake knowing the right thing on a lot of stuff, but I always thought that on the REALLY big stuff they knew what they were doing. I was waiting for that big James Earl Jones voice to tell me "Yes. You have done the right thing" or "Stop that scalpel NOW" or even "Luke, I am your father". Anything but silence. Instead I was left with a bunch of random thoughts, and a sense of being in a strange time warp. Here is where I think I was supposed to learn a lesson. If I were to have let go, and placed my worries at God's feet he would have gladly picked them up and carried them for me. Instead, I clung to them, trying to make sense of things out of my own mortal mind. I wonder how often I've done this without knowing it.
25 minutes later it was finished. Recovery went well, and he showed no signs of being sick from the drugs. The surgery went according to plan too - which was good. He is now at home, resting in bed after putting a pretty large dent in a big can of chicken noodle soup. He has even been running around a bit and climbing up furniture. Kids sure are resilient.
I've rambled a lot now, and I should probably stop while I still am making a semblence of sense.
Wednesday, June 8, 2005
The Biopsy
Doug is scheduled for a muscle biopsy tomorrow. It's purely a diagnostic, and supposively quite routine. The thing is, it's not routine for us.
They're going to take 2 square cm of muscle out of his left thigh. That sounds like a lot of muscle. We've been reassured by the doctor doing the work as well as several physiotherapists and other doctors that it won't impact his development. He is supposed to be up to his old tricks (with some minor pain that Tylenol can handle) in a matter of days. I guess the muscle is a big one, and kids are resiliant or something. The purpose of this is to measure the Dystrophin in his muscles. This is supposed to help figure out the timelines of the onset of his symptoms. This, in turn, is supposed to help decide on treatment options and timing.
But in the meantime, we will have scarred Doug for life. I know, a scar on his leg (5cm- and will grow with him) isn't anything compared to what he will be going through eventually, but it's the first big reminder that he's not a normal 2 year old anymore. The inscision will require some form of dressing or tape on it for 3 months. That's a long time. We've agonized long and hard over the decision to do this. It's not easy to send your child under the knife for "unnecessary" surgery, no matter how competent the doctors are.
And I guess that's why I'm frustrated with the hospital. His surgery is tomorrow - but we still don't know when. We might have to be at the hospital as early as 6am. We might not have to be there until the afternoon. How do you plan around that? The steps for taking care of Samantha when you leave the house at 5am are much different from 2pm. The uncertainly isn't really all that significant, yet it weighs heavily on our minds.
I think this is hitting Allison even harder. Pray for strength and peace of mind for her. And pray for the results. Up to now, we've pretty much received mostly "worst case" news. Not a balance problem, MD. Not Beckers, but Duschene. I'm not sure where the breaking point is, but I really don't want to test my emotional stability anymore.
They're going to take 2 square cm of muscle out of his left thigh. That sounds like a lot of muscle. We've been reassured by the doctor doing the work as well as several physiotherapists and other doctors that it won't impact his development. He is supposed to be up to his old tricks (with some minor pain that Tylenol can handle) in a matter of days. I guess the muscle is a big one, and kids are resiliant or something. The purpose of this is to measure the Dystrophin in his muscles. This is supposed to help figure out the timelines of the onset of his symptoms. This, in turn, is supposed to help decide on treatment options and timing.
But in the meantime, we will have scarred Doug for life. I know, a scar on his leg (5cm- and will grow with him) isn't anything compared to what he will be going through eventually, but it's the first big reminder that he's not a normal 2 year old anymore. The inscision will require some form of dressing or tape on it for 3 months. That's a long time. We've agonized long and hard over the decision to do this. It's not easy to send your child under the knife for "unnecessary" surgery, no matter how competent the doctors are.
And I guess that's why I'm frustrated with the hospital. His surgery is tomorrow - but we still don't know when. We might have to be at the hospital as early as 6am. We might not have to be there until the afternoon. How do you plan around that? The steps for taking care of Samantha when you leave the house at 5am are much different from 2pm. The uncertainly isn't really all that significant, yet it weighs heavily on our minds.
I think this is hitting Allison even harder. Pray for strength and peace of mind for her. And pray for the results. Up to now, we've pretty much received mostly "worst case" news. Not a balance problem, MD. Not Beckers, but Duschene. I'm not sure where the breaking point is, but I really don't want to test my emotional stability anymore.
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