Day 63: Arrgh the Booty!

The hospital goes all out for the kids for Halloween, we've never been in the hospital for Halloween before so we didn't know what to expect. John was amazed at all the costumes, especially the teenage boys dressed as Tweety and Sylvester and only a little scared of the grandma wearing the Scream costume. What possessed the grandma to wear the Scream mask and costume I'll never know, but I was able to tell John it was a costume, just pretend like the other ones and he was able to go on. After the first person put something in his bag I told him to say 'thank-you', after that he was all smiles and 'thank-you, thank-you' often before we even got to the next person. As you can see from the pile that he is laying in there were lots of thank-you's to share and this pile is after we started putting together bags for the Hen's kids that are coming tomorrow. Do I regret not dressing John up, well no, not really, he would have probably been on the nightly news then, but well, he's always in bed before that anyway, besides he had a great time and now he has some things to share with others too, and I think he'll like that just as much.

Day 62: Happy Reformation!

If you're looking for John's clinic appt info for the day, scroll down, it's in the next post down.

Yes, I know Reformation Day is actually tomorrow and most everyone celebrated it this past Sunday, but for me I like today, as today is also the anniversary of my confirmation and it and Reformation Day just belong together, and if the churches can just willy nilly move it, I think I get to too.

I spent some time trying to explain to John that when we celebrated Reformation we were celebrating the revealing of Jesus, that the church had covered him with useless traditions, indulgences and such and that what Martin Luther did was take away these things that hid our Lord from us. I've run into lots of people over my years as a Lutheran who believe that our liturgy, the pastor's vestments, and old hymns are more of these useless traditions that hide Jesus from seekers and young people. I've never understood this, we aren't requiring praying to saints, we're not seeking money for elevation out of purgatory and we surely aren't conducting the worship service in a language foreign to the people.

For me coming to the Lutheran church was a life saver. Ever since I 'asked Jesus into my heart' as a child in the Baptist church I worried and wondered, fretted and despaired that I hadn't done it right, that I didn't really mean it or that maybe I only meant it then but didn't mean it today. As a teenager I was tempted by all the things that other teens are tempted by and surely if Jesus came and lived in my heart I wouldn't be tempted to do these things. I went forward at nearly every altar call hoping, praying that someone could assure me that I was really a Christian. To this day I cringe every time we sing 'Just as I Am', not because it's a bad hymn, but because it brings back bad memories of fear and despair.

As time went on I was confused by the insistence that the wine that Jesus made at Cana was really grape juice and since that wasn't really true I was able to start discounting a lot of the rest of the scriptures also. It started with Creation, that's a hard one to swallow and so it, like the wine, must not really be what it said, and then of course Virgin Birth, resurrection and so on and so forth until I came to the point in my life that I was pretty sure that Jesus was really only the Savior of Christians and all gods were pretty equal and equally useless.

The first rescue from this disastrous line of thinking was the death of my dad. It's hard to think of something so heartbreaking as a lifeline, but it was, because I hurt and I missed him so very much that I had to figure out where he went. Evidence in my dad's life pointed to Christ and to heaven as his home, that started me thinking that maybe I should give this religion thing another try, after all the things that I was doing wasn't making me happy and in fact I was spiraling into depression. So I called my sister and asked if I could attend church with her for the month of September 1994. I was sure that I needed to go for a whole month to give it a chance, and then if that didn't work I would move on and try other Christian denominations until I found one that could fill the hole that alcohol, smoking and trashy friends weren't being able to fill.

My sister attended Our Savior Lutheran Church in Stevensville, Mt and that is where I headed that Sunday morning in September. I was shocked that the walls didn't fall in or the roof crumble on my head, surely if God knew all the things that I had done the pew that I chose to sit in would turn into an ejection seat and I'd soon find myself flying back out to the parking lot. Instead I found peace. I spent most of the first service just sitting listening in shock. I had never heard the liturgy before and I was amazed, I was in awe, all these people were speaking Words that I knew were from the Bible, Words that spoke of Christ. Most of them spoke the liturgy without the book in their hands and I was so amazed that these Words were a part of them, I wanted them to be part of me too. The hymns sang about Christ too, not about me, but about Christ and what He had done. I was eager to return the next week.

The next week was just as wonderful and this time I actually found that I could follow along in the hymnal a bit. I really liked that the service was the same, it made it timeless, like I had never left last week, and gave me more time to absorb those wonderful Words that these people knew and lived. I wasn't offended or put off by the old hymns, the Thee's and Thou's or any of the liturgy, on the contrary it had a majesty, a holiness, somehow when it was going on and the people were speaking and singing, it was like being in a different place, like being in heaven maybe, maybe better than any being in heaven had ever been described to me before.

Soon the pastor preached a sermon in which he said that if any part of you, even the smallest part desired to be with Christ and to be good, then you already were a Christian. I was shocked. All this time, since way before I had 'asked Jesus into my heart', way before I was baptized I had wanted to be a Christian and be good to others, I had been a Christian all along. He went on to talk about faith not depending on us, that it depended on Christ and His work. Another shock, you mean it didn't depend on me trying to be good, it didn't depend on me chasing out my own doubts, somehow that made being good and believing even easier to do, it didn't make sense but for the first time in a long, long time I was starting to feel hopeful. But still there was that nagging feeling, if only they knew the things that I had done they wouldn't be sitting in church singing and speaking of Christ, they'd be marching me to the parking lot and helping me on my way.

The very next week the pastor preached a sermon on forgiveness, he told me, surely he was just talking to me, that God knew my sin, even those sins that were so awful that I could barely even manage to admit them to myself, God knew and Jesus died to pay for them and they were all forgiven, every last one, even the ones that I couldn't speak out loud. That wasn't the first time that I sat in church and cried, and it certainly wasn't the last, but it was the first time since I was a little kid that I felt free, felt that even I could be loved by God, indeed was loved by God. I needed to be here, I needed to be surrounded by this wonderful liturgy and hear these words all the time, why exactly didn't we have church every day.

The pastor wasn't much on catechesis and poor Mark has had to fill in a lot of blanks since then, but I was confirmed on that Reformation Sunday, the 30th of October, 1994. All of this was just in the nick of time, of course in God's perfect time, because it was then that our church, yes - my church, had a vicar, the vicar that I fell in love with and the vicar that is now the pastor that I love to this day. Without this beautiful liturgy and these Words of Christ spoken through a pastor, well I don't even like to think about where I would have ended up or the wonderful things in life that I would have missed out on.

I still run into people that find the liturgy and old hymns of the church too restrictive. I love the TLH, I love those hymns and yes some of the hymns out of the newer hymnals too, they give me freedom, the freedom to live each day without fear of the sins of the past and with the love and desire to take care of the people, the neighbors that are here now. I was thinking about this last night and to me the closest comparison to the freedom given by the liturgy and real hymns is the freedom given to John by his specialized chair. This chair is rather restrictive and keeps the trunk of his body stable so that he can concentrate on moving his arms and head and mouth and such. This is what the restriction of the liturgy does for me, it holds me up and supports my weak faith so that I can spend my energy battling my sinful nature and taking care of my family and my neighbor. I am too weak of a Christian to indulge in the fads and trends of contemporary worship. I constantly need the Words of Absolution spoken in my ears to remind me that I am forgiven, and as often as possible I need, I crave the forgiveness given in the Lord's Supper. I often think that Jesus had me in mind when He instituted this, knowing that I'm so stubborn and slow to believe He made His forgiveness so real that I could touch it, smell it and taste it and offers it over and over lest I forget and slide back into the despair of unbelief.

Honestly this is what I miss the most about home, I certainly miss being with Mark all the time, being in our house and having our church family around, but when it comes right down to it the thing that I miss the most is standing amongst my church family singing the liturgy and hymns, being fed forgiveness in all its wonderful forms and knowing that for that little while my feet may be on earth, the rest of me, the rest of me is somewhere else, somewhere in the very presence of Christ with these who have become my friends and family, and those of my family who have gone there before me.

So Happy Reformation Day from me!

Day 62: Clinic Appt

John had his weekly clinic appointment this afternoon. He is now 25 pounds 11 ounces and looks great. His labs were good. His liver is holding in there, they did find that he already has some cirrhosis when they did the biopsy, but the liver enzymes are still reading normal even though his albumin levels are chronically low. The J-G tube that was scheduled for tomorrow was put on hold again, though not yet completely canceled. We are going to be giving him Gent orally to control the bacterial overgrowth for 48 hours, then start increasing feeds again. If he can tolerate increasing then it sounds like that option will be pretty much taken off the table next week. At one point last year John was up to 100 ml's per hour of g-tube feed over 10 hours at night and then 500 ml's of ceralyte over 2 1/2 hours in the afternoon and was doing pretty good until the bacterial overgrowth just got out of hand. So we have hopes that his stomach can handle the g-tube feeds and we can get him growing and gaining weight and doing well without the TPN. We did make a step forward on that note this week as his lipids are being discontinued. As always we are praying that God's will is done, but specifically this week we are praying that a little guy can continue to gain weight without the lipids and be able to advance his feeds appropriately.

Day 62: Happy Reformation Day

Yes, I know Reformation Day is actually tomorrow and most everyone celebrated it this past Sunday, but for me I like today, as today is also the anniversary of my confirmation and it and Reformation Day just belong together, and if the churches can just willy nilly move it, I think I get to too.

I spent some time trying to explain to John that when we celebrated Reformation we were celebrating the revealing of Jesus, that the church had covered him with useless traditions, indulgences and such and that what Martin Luther did was take away these things that hid our Lord from us. I've run into lots of people over my years as a Lutheran who believe that our liturgy, the pastor's vestments, and old hymns are more of these useless traditions that hide Jesus from seekers and young people. I've never understood this, we aren't requiring praying to saints, we're not seeking money for elevation out of purgatory and we surely aren't conducting the worship service in a language foreign to the people.

For me coming to the Lutheran church was a life saver. Ever since I 'asked Jesus into my heart' as a child in the Baptist church I worried and wondered, fretted and despaired that I hadn't done it right, that I didn't really mean it or that maybe I only meant it then but didn't mean it today. As a teenager I was tempted by all the things that other teens are tempted by and surely if Jesus came and lived in my heart I wouldn't be tempted to do these things. I went forward at nearly every altar call hoping, praying that someone could assure me that I was really a Christian. To this day I cringe every time we sing 'Just as I Am', not because it's a bad hymn, but because it brings back bad memories of fear and despair.

As time went on I was confused by the insistence that the wine that Jesus made at Cana was really grape juice and since that wasn't really true I was able to start discounting a lot of the rest of the scriptures also. It started with Creation, that's a hard one to swallow and so it, like the wine, must not really be what it said, and then of course Virgin Birth, resurrection and so on and so forth until I came to the point in my life that I was pretty sure that Jesus was really only the Savior of Christians and all gods were pretty equal and equally useless.

The first rescue from this disastrous line of thinking was the death of my dad. It's hard to think of something so heartbreaking as a lifeline, but it was, because I hurt and I missed him so very much that I had to figure out where he went. Evidence in my dad's life pointed to Christ and to heaven as his home, that started me thinking that maybe I should give this religion thing another try, after all the things that I was doing wasn't making me happy and in fact I was spiraling into depression. So I called my sister and asked if I could attend church with her for the month of September 1994. I was sure that I needed to go for a whole month to give it a chance, and then if that didn't work I would move on and try other Christian denominations until I found one that could fill the hole that alcohol, smoking and trashy friends weren't being able to fill.

My sister attended Our Savior Lutheran Church in Stevensville, Mt and that is where I headed that Sunday morning in September. I was shocked that the walls didn't fall in or the roof crumble on my head, surely if God knew all the things that I had done the pew that I chose to sit in would turn into an ejection seat and I'd soon find myself flying back out to the parking lot. Instead I found peace. I spent most of the first service just sitting listening in shock. I had never heard the liturgy before and I was amazed, I was in awe, all these people were speaking Words that I knew were from the Bible, Words that spoke of Christ. Most of them spoke the liturgy without the book in their hands and I was so amazed that these Words were a part of them, I wanted them to be part of me too. The hymns sang about Christ too, not about me, but about Christ and what He had done. I was eager to return the next week.

The next week was just as wonderful and this time I actually found that I could follow along in the hymnal a bit. I really liked that the service was the same, it made it timeless, like I had never left last week, and gave me more time to absorb those wonderful Words that these people knew and lived. I wasn't offended or put off by the old hymns, the Thee's and Thou's or any of the liturgy, on the contrary it had a majesty, a holiness, somehow when it was going on and the people were speaking and singing, it was like being in a different place, like being in heaven maybe, maybe better than any being in heaven had ever been described to me before.

Soon the pastor preached a sermon in which he said that if any part of you, even the smallest part desired to be with Christ and to be good, then you already were a Christian. I was shocked. All this time, since way before I had 'asked Jesus into my heart', way before I was baptized I had wanted to be a Christian and be good to others, I had been a Christian all along. He went on to talk about faith not depending on us, that it depended on Christ and His work. Another shock, you mean it didn't depend on me trying to be good, it didn't depend on me chasing out my own doubts, somehow that made being good and believing even easier to do, it didn't make sense but for the first time in a long, long time I was starting to feel hopeful. But still there was that nagging feeling, if only they knew the things that I had done they wouldn't be sitting in church singing and speaking of Christ, they'd be marching me to the parking lot and helping me on my way.

The very next week the pastor preached a sermon on forgiveness, he told me, surely he was just talking to me, that God knew my sin, even those sins that were so awful that I could barely even manage to admit them to myself, God knew and Jesus died to pay for them and they were all forgiven, every last one, even the ones that I couldn't speak out loud. That wasn't the first time that I sat in church and cried, and it certainly wasn't the last, but it was the first time since I was a little kid that I felt free, felt that even I could be loved by God, indeed was loved by God. I needed to be here, I needed to be surrounded by this wonderful liturgy and hear these words all the time, why exactly didn't we have church every day.

The pastor wasn't much on catechesis and poor Mark has had to fill in a lot of blanks since then, but I was confirmed on that Reformation Sunday, the 30th of September, 1994. All of this was just in the nick of time, of course in God's perfect time, because it was then that our church, yes - my church, had a vicar, the vicar that I fell in love with and the vicar that is now the pastor that I love to this day. Without this beautiful liturgy and these Words of Christ spoken through a pastor, well I don't even like to think about where I would have ended up or the wonderful things in life that I would have missed out on.

I still run into people that find the liturgy and old hymns of the church too restrictive. I love the TLH, I love those hymns and yes some of the hymns out of the newer hymnals too, they give me freedom, the freedom to live each day without fear of the sins of the past and with the love and desire to take care of the people, the neighbors that are here now. I was thinking about this last night and to me the closest comparison to the freedom given by the liturgy and real hymns is the freedom given to John by his specialized chair. This chair is rather restrictive and keeps the trunk of his body stable so that he can concentrate on moving his arms and head and mouth and such. This is what the restriction of the liturgy does for me, it holds me up and supports my weak faith so that I can spend my energy battling my sinful nature and taking care of my family and my neighbor. I am too weak of a Christian to indulge in the fads and trends of contemporary worship. I constantly need the Words of Absolution spoken in my ears to remind me that I am forgiven, and as often as possible I need, I crave the forgiveness given in the Lord's Supper. I often think that Jesus had me in mind when He instituted this, knowing that I'm so stubborn and slow to believe He made His forgiveness so real that I could touch it, smell it and taste it and offers it over and over lest I forget and slide back into the despair of unbelief.

Honestly this is what I miss the most about home, I certainly miss being with Mark all the time, being in our house and having our church family around, but when it comes right down to it the thing that I miss the most is standing amongst my church family singing the liturgy and hymns, being fed forgiveness in all its wonderful forms and knowing that for that little while my feet may be on earth, the rest of me, the rest of me is somewhere else, somewhere in the very presence of Christ with these who have become my friends and family, and those of my family who have gone there before me.

So Happy Reformation Day from me!

Day 61: Energy to Fidget

Never before have I seen John have the energy to fidget just to be fidgeting. Today he did, he spent a good two hours just bouncing his leg up and down on his stroller. It was quite entertaining, especially considering we were in the treatment center because John ran a bit of a fever this morning. It's virus snot stuff, he got his flu shot today though and of course had labs and cultures and stuff drawn and got looked over thoroughly, but for all the world it just looks like the kids got a pretty good cold going.

Today is also the first day that I had school planned out instead of just winging it and I was impressed with how much stuff he sat through and enjoyed. We started with singing "Lord Keep Us Steadfast In Your Word", then read the story of the Annunciation out of his kids Bible, read through the Ten Commandments and their meanings and had morning prayer, then we colored the apple picture which finished off all the activities for "A" and went on to "B". I was impressed that John just showed me the sign for "B" before I even asked and he was delighted to blow bubbles, have me blow cotton balls around on the table and blow on his pinwheel. He glued construction paper balloons to a construction paper sky and was even happy to go through the cards that I made him for shapes and colors. I think this evening we'll blow stuff again and maybe color the banana for "B" leaving only the cool butterfly project left before we go on to the "C's". For the butterfly he's going to get to sort beans and then glue them to a big butterfly, he is going to totally love this, but I'm waiting until Mark comes and brings me a muffin tin for him to sort with. I've been really impressed with how much John loves and wants to do school, it's one of the first things he asks for in the morning, so I figured I would take advantage of his enthusiasm and we would have school often.

While we were in the treatment center I had the TV on PBS and I was amazed at how much of it he was catching. It makes me think that maybe instead of trying to have him play with his toys in the evening that I'll turn PBS Kids on in the afternoon and have him play then. John isn't very good at playing by himself and so this is one of those things that we are trying to learn. He's better at it at home, but even there he'd much rather be entertained by one of us.

I haven't told him yet that dad is coming back this week, I'll probably do that later today or tomorrow. We finally had to order new casters for the gait trainer as John ran his through the mud puddles at home enough that he thoroughly rusted the inside of them and they have gotten to the point that no amount of cleaning will make them roll easily anymore. So new wheels are on the way to our house and dad, new wheels, tools and a whole list of other junk is headed this way as soon as the new wheels appear! I can't wait to see John zip up and down the hallways again, and neither can a whole bunch of other people around here. I keep having to explain that he's okay, the wheels are the issue, and the nice maintenance guys keep offering to take them apart and work on them again. All in all we couldn't have landed in a more friendly place.

Day 60: Reformation Sunday

We started out the morning with Mark calling us and singing A Mighty Fortress and ended with him calling and singing Lord Keep Us Steadfast in Your Word. The middle of the day, well it went. We did spend some time coloring a Jesus picture and talking about the Reformation, boy that's not an easy subject to talk to a 3yo with. I'm thankful that I've got many more opportunities to address this very important topic.

Day 59: Signs of Growth

The last few days have been filled with signs that John is growing. I had to remove the darts that I put in his pants, his diaper tapes don't cross, he's grown out of all but one pair of shoes and they are close and today I realized that his braces are too little - his newly chunky calves are just too big to be squeezed in there anymore - all of which leaves us cheering and smiling!

Since today is Saturday we took it easy and played and read books. He helped make his first paper chain and put more animal stickers on construction paper - this time I drew him a bit of a picture and had him look and place them on lines and such, he's getting better at this skill. I even read him the first few pages of Farmer Boy this evening and he was liking it, we might try that some more tomorrow.

John hadn't noticed that Tiger had gone missing until dinner time this evening and then, of course, he not only wanted Tiger but he wanted him now. I looked high and low around here and was about to call Mark to have him look in the Jeep when I thought to call Charity and see if our wayward Tiger was hanging out at her house. Sure enough that Tiger is there, phew, I told John that Tiger was at Miss Charity's and he cried, I told him it was okay that her oldest two were watching out for him and he would be okay and he was a little better, then I told him that Miss Charity would bring Tiger safely back next week and he was okay.

Tomorrow our congregations are celebrating Reformation Day, here I sit surrounded by pumpkins and fall decorations, all of which I'm grateful for, but I really miss the red of Reformation and so am off to find John something to color tomorrow so that we can talk about Reformation and what it means.