Simul Justis et Pecatur

Christian Community, Christian Love

2012-01-25T12:33:00.000-08:00

What in the world does attending worship have to do with loving our neighbor and caring for our brothers and sisters in Christ?

Have you ever pondered that question? Do I go to church just for myself? I must admit that on one note I do, I know that I am a dirty rotten sinner and in worship Pastor pronounces absolution for my sins, ahhh, thank you, and gives me Christ's forgiveness in the Lord's Supper, double thank you, may I have more please.

But in reading Pastor Harrison's "Little Book on Joy" I was given much more to think about. In his chapter entitled "A Community of Joy" he recounts a story about football, a subject of which I know absolutely nothing, but the story is about how he made a mistake and his team was able to recover and win an important game. He uses this as an illustration about how we as members of a congregation are to not only forgive each others sins but to compensate for them and help the community keep going forward in Christ even when a member of the community stumbles and falls. Our job as Christians is to pick up our brother or sister and their cross and keep moving in Christ's mercy and grace, and their job is to pick up ours when we stumble and fall. We do not walk this road of faith alone, this isn't just me and Jesus, it's me and all my brothers and sisters in Christ and Jesus and all these neighbors that I have been plunked down in the middle of.

We do not attend worship just for ourselves, or just to receive the forgiveness of Christ, nor is it only the Pastor in the service whose job it is to speak Christ and His forgiveness. As I sing or speak "Lord have mercy, Christ have mercy, Lord have mercy," I am not just begging Christ for His mercy for me and my loved ones but for all the members of His church who are in my hearing. When I confess my sins, I'm not just telling God or the Pastor that I need forgiveness but I am confessing to those in my hearing that I am a poor miserable sinner and need that forgiveness. When the Pastor pronounces absolution and I say "Amen" it is not just "yes, yes, do this for me" but "yes, yes, do this for the person in the pew behind me too."

In our worship we speak God's love, His forgiveness, His life and salvation to each other, and we speak it to our Pastor too. He needs to hear us say these Words of God for him as well. When we go to worship we are the receivers, as in God serves us with His mercy and grace, God Himself has no need of our praise or adoration but our neighbors, including our Pastor, needs to hear them, needs to know that we are there to pick up them and their cross too, to praise God with them, and that we stand as fellow sinners in need of forgiveness with them. As we leave worship we are to continue to serve them and serve with them all the neighbors that God has given us who do not attend worship and do not have this Gift spoken into their ears each week.

Surprised by Joy

2012-01-19T09:35:00.000-08:00

My dearest love has always been a good cook, actually he's an amazing cook and my favorite person to spend time in the kitchen with. He sees food and flavors in ways I would have never thought of and he has creativity that complements mine and yet is enough different to always keep a surprise in the dish. To walk around the corner and see him like this just brought a surprise of joy to my morning, here he is all dressed up and ready to go visit with his CPE supervisor and at the same time making sure that the chicken didn't over brine, he's my multi-tasking dream boat :)

So That's What It Was

2012-01-18T16:19:00.000-08:00

For the past few days I have wondered what John was up to, he would stand in his chair playing with Mark and be sneaking his foot up in his chair Tonight when I saw that little butt cheek scooch onto the table i knew, and there he was...

...and when he was all done got back in his chair all by himself :)

Dinner Theater

2012-01-17T18:50:00.000-08:00

Up until just a few days ago John has always sat next to me at whatever table we were eating at, but now that has changed and dinner will never be the same again. John loves to sit by dad, and play with him and entertain him and me and I think the dog too. Just before these antics he was standing up and bopping Mark on the head, and then would bop himself on the head and fall back into his chair. It's always a good show ;)

Two Things That Should Never Be Left Unsaid

2012-01-16T15:49:00.000-08:00

"I love you" and "I forgive you", they should never be just implied, inferred, or said in any way that leaves the hearer wondering if that's what you meant.

The first I learned from my family and to this day it comforts me greatly that even though I didn't get to talk to my dad on the day before he died when he was calling everyone (I didn't have a phone) that the last thing I said to him the last time that I talked to him was "I love you." It's the last thing I say to Mark each time he leaves out the door or right before I fall asleep and the last thing that I say to John every time I pull out his hearing aids for bed, or to clean them. If you love someone, let them know, and always remember nothing says 'I love you' like just saying it.

The second I learned from Mark. These were not common words in my family growing up, not that we didn't forgive each other, just that it was never said in so many words. It's also not something that I commonly hear, sadly even amongst people in church. Sometimes the words are easy to say, other times they are really hard, especially if I am very hurt and even more so if I doubt the person really means to change, but I can't judge another's heart, I can only hear what they say and when someone says 'I'm sorry' the right answer is always 'I forgive you'. I try to remember that Christ told Peter that he was to forgive his brother 70 x 7 times, that's a lot, and he didn't mean to count up to there and then the next 'I'm sorry' was to be met with anything other than 'I forgive you'. I always try to remember that my sins against God are legion compared to even the worst things done to me by any person, Christ died for me and I am forgiven, therefore I can say 'I forgive you' to those who say they are sorry for what they have done.

Snow Angels

2012-01-15T16:21:00.000-08:00

First snow, first snow angels :)

Down in the Dirt

2012-01-14T16:19:00.000-08:00

While the weather held out John got to do something brand new, he went outside by himself and played in the dirt. He took a spoon and knife, then needed a cup, trucks, and a few other things. I'm sure we'll find the knife as soon as the weather clears up, lol, or maybe his faithful companion will dig it up for him, who knows. The smiles weren't possible to catch on camera without interrupting the playtime, but believe me they were priceless.

A Whole Different Angle

2012-01-13T14:58:00.001-08:00

I'm not sure what other parents think about when they make decisions about things like spanking or tv time or homeschool or not. Mark and I thought through those kind of questions right when we got married, but 9 years later those decisions had been left in the dust of infertility, albeit I rather like the term barrenness better at this point in life. Long after we ever considered the possibility that God's 'no' to our desire for children could have been a 'not yet', John came along.

John was a total surprise, I would say shock, but really we weren't shocked. When my cousin called to ask if we would adopt her step-daughter's baby I told her 'yes' without a second thought and when I got off the phone and told Mark what she wanted he too said 'yes' without hesitation. From that instant we were John's parents, in our hearts, in our minds, it was a done deal, sealed and delivered right there in our basement, hundreds of miles away from where John was growing inside his biological mother and yet only 9 short days from when we would see him.

Those 9 days were panic time, nope, not panic about being parents, panic about how in the world to go about adopting someone. Mark and I were clueless as to what was involved, lawyers, money, papers, reviews, more lawyers, way more money. Our family came to the rescue, Mark's brother offered to pay adoption fees for us, we could have never paid what could have been the amount needed, other family members offered encouragement, support and prayers and member's of Mark's congregation were encouraging as well. We were in shock, still not about becoming parents, but wow what a mile of red tape and the short amount of time to figure it all out was shocking.

Parenting decisions were not forefront in our mind, it was a given that John would be baptized as soon as we could, would be raised in our faith and would be home schooled. We didn't have a clue about other parenting issues and had just settled on the name John Allen, John for John the Baptizer and Allen for my dad, when the call came that John Allen had indeed already been born, what, wait just a minute that was supposed to be almost two months from now, that was a shock!

I'm sure all parents fall in love with their child the moment they see them, we were the same, and when the news was so dire that John wouldn't survive long at all we made the only parenting decision we knew how to make an absolute determination that John would be loved and know that he was loved each day of his life and that each of those days would be the very best that we could make it, no matter how few of them that there were. John was baptized and we carried on with our determination and the days passed into months and the months became years and still we functioned with our primary parenting decision being that John would know he was loved and each day would be the best possible.

After John's transplant we started thinking about we needed to raise John so that as a teenager and adult that he would want to continue taking his medications, most people who reject their organs years out from the transplant do so because they stop taking their meds. That little change took months on end to sink in and then this Christmas when we were visiting Mark's brother in Arkansas I said something that stuck in my mouth, stuck in my brain and continues to stick there. "We never thought about raising an adult, we were always just enjoying the days we were given."

Raising an adult, hmmmmm, I will admit that I am completely clueless as to how to do that, Mark doesn't seem to have too many ideas on the subject either. The more I think about it the more I wonder if we need to change anything. All along we have felt that John would be happiest being as independent and free as possible and so have raised a little free spirit that is not afraid of most new challenges and comes at everything knowing that he has two parents who love him unconditionally, even if he couldn't define the word 'unconditionally' for you. He loves life, he loves to learn new things, he loves to figure stuff out and he is generally joyful. He knows Jesus forgives his sins, he knows that he needs to forgive others and he loves and cares for us and others freely. I have never known a person, of any age, who exudes life and joy like John does, we stand in awe of him and his affect on others and not just because he is ours but because he is John.

The more I think about parenting from the perspective of a child who would survive into adulthood the more I wonder if we really need to change a thing. There are no guarantees, length of days is not something which God informs us of, or of which we would truly want the knowledge if He offered it. When I look at life from the perspective of John growing to be an adult somehow I find myself in exactly the same spot adamantly determined that he will know he is loved each and every day, and making sure that each day is the best it can be, no matter how many days there are. Funny how life from a different angle can remain the same on this note, while in other ways it has surely changed.

He Remembers the Barren

2012-01-11T12:53:00.000-08:00

He Remembers the Barren, a book written to the heart of women dealing with fertility issues. Actually it goes farther than that, I have just finished it and would recommend it to anyone who has or has known someone who has dealt with any fertility issues whatsoever, miscarriage or just discontentment in a situation that is out of their control. Rarely have I read a book that I would recommend without some reservations, especially on this topic, but here is Christ's peace and grace spoken clearly and gently to souls in pain. I thought that I had pretty much exorcised my demons over infertility but this book has helped me find a peace that I didn't even realize I needed or could have. Thank you Katie Schuermann and Melissa DeGroot, I am now putting this book in my husband's hands and next will be ordering copies for others whom I know and love and 1 to stick in my purse for the day that I run into someone else who needs it.

Ramp to Happiness

2012-01-05T14:02:00.000-08:00

I didn't realize until it was all said and done that we have been in the process of getting this ramp built for nearly 2 years and that prior to it's completion John has never had the freedom to just go outside and just play. As you can tell in the picture it is only near completion but some little boy couldn't wait even one more minute to try it out :) Ok, I still keep a pretty close eye on him, but since Mellon has gotten really good at being tied to his chair and hanging out with him, I don't feel like I have to stand in the window the entire time he is outside. It's amazing how busy life is. I thought that once we weren't going to hospitals all the time that it would slow down to a crawl and we would have all the time in the world to do everything, funny, we have all the time in the world and are so busy doing everything that the time just flies by. Our days are filled with reading and some drawing and writing, lots of playing outside, playing with games and just playing, it's amazing, it's nothing we could have ever imagined. It has changed how often I get online for anything though, often the computer is busy being our radio and we are off playing, blogs, Facebook and email get checked once or maybe even twice in a day but somedays we don't get to them at all. Prior to this silence on our end meant that things were so scary we didn't know how to talk about them, lol, now it means that we are so busy we could talk all day about the joy and life going on but are just too busy keeping up with it :)

A Picture is Worth a Thousand Words

2012-01-04T13:56:00.000-08:00

Joy. Unfettered joy. Unstoppable joy. Joy that no words can sum up. That's what this past month has been for John. Silly string. Friends. More silly string. More friends. Presents. Christmas lights. More friends. Music. More presents. Family. Smiles. Love. Joy. Not a thousand words for sure, and no where close to just how wonderful this holiday season has been for John and for us. The smile says it all!

All Primed Up

2011-11-23T08:00:00.000-08:00

One of my favorite parts of life here in our crazy house is that it is all lived together, rarely do we do anything that doesn't involve all of us, we play games together, we draw pictures together, we eat together and yep we even paint together, albeit I will admit to bribing John with the tv remote to let us paint the rest of the primer alone and after he 'helped' by painting the wall color on the trim for us, you guessed it, I bribed him some more. Oh well, bribery works and while I was painting in the living room I was entertained by a not-as-short-as-he-used-to-be boy who was loving some Curious George and Mario Kart.

Fried Rice

2011-11-22T08:00:00.000-08:00

When we decided to go grain free one of our normal meals was fried rice with anything left over in the fridge. We haven't eaten that in a long time. But another Chaplain in Kansas City and Mark were visiting about food and he told Mark how he made fried rice in the traditional Chinese way, so Mark came home and made it for us and as you can see it was a hit. It will be on the menu again, not every day like it was but occasionally, who could pass on something that brought this much joy!

Don't Stop Here

2011-11-21T10:00:00.000-08:00

Thanks to the help of a great counselor/Pastor I have known since before John's transplant that I was dealing with some pretty serious anxiety stuff and some post traumatic stress stuff too. We didn't realize just how real all of it was until the morning of the 16th, one year from the day that we sat in the little waiting room just outside the doors of the PICU, we had been told downstairs in the surgery waiting that John had taken a turn for the worse in surgery and had been invited to come sit up stairs closer to the doors where he was because they were trying to stabilize him and they didn't know if we would get to see him alive or not. I honestly have no clue how long we sat in those two chairs with the physicians assistant coming out every so often to tell us that they were still fighting to keep him here and that it wasn't going well and then finally finally we could go in, we couldn't touch him, we couldn't get close to him, we could only be in the corner of the room because they just really weren't sure even then that he was going to make it but they were still fighting with everything they had and needed us to not be in the way of that fight. Long story short, he did make it and is doing wonderfully, amazing actually, beyond anything we ever hoped or dreamed.

Since surgery every morning I wake between 3 and 4, I'm not even sure I realized that I was doing that when John was in the PICU, it finally dawned on me that it was every day when we got to out patient status and while I expected it to stop once we got home it hasn't. Some nights I am awake for a few minutes and can go back to sleep relatively easily, many nights I am awake for several hours and am clueless really as to why I am awake, just that I am.

The morning of the 16th I woke up like normal and laid there by Mark, usually I like our nice dark room, but this time it felt like it was closing in and by the time John's pump went off and Mark woke to go shut it off I was mentally wired and knew that I had to go see John, had to make sure he was really here, so I went, I saw him, he was breathing just fine, sleeping peacefully, warm to the touch, obviously alive and well and I started to cry, by the time I got out of the room and down the few feet of the hall to the bathroom I was sobbing. I'm not even sure how I got back into bed, my heart racing so fast I was afraid it would explode and I would die right there, and all I could remember was those damn chairs in the waiting room, sitting there, just sitting, wondering if we would hold him alive again, sobbing, screaming, crying, waiting. I couldn't even remember if we had come home or if John had survived, nothing was as real as those two chairs, nothing, not even Mark holding me. Finally I got to where I could hear him, he was saying something about John being okay, I was able to think a little, we left the chairs and went into John's room, nurses and doctors everywhere in that small space, the ventilator running, the monitors and IV pumps, and blood, oh God all that blood, and my baby and I couldn't touch him or hold him and he was dying and I would never see him smile and the chairs, those damn chairs in the waiting room. The heater kicked off, in hindsight I think it kicking on is what woke me up, but when it kicked off I could hear John breathing from the other room. John, breathing, breathing normally, he's here, he's home, we're home, scrambling looking for my iPod, yes there the pictures from when we were out for the day, real, really there, breathing. It took a long while, I have no idea how long, but I know I looked at that picture of John and Mark for a long long time and then I was able to start thinking, we came home, John came home, he was so silly, he sat in the floor at the movie and then needed to dance, he loved the french fries at the restaurant, the gun, oh how could I have forgotten he found a picture of an air soft pistol in the Bass Pro ad and showed it too me like 100 times yesterday, how could I have forgotten the glee, the smiles, the joy, the breathing, the warm, and the day flooded back and slowly I went back to sleep.

When I woke up later I felt like I had tried to run a marathon, every muscle in my back, legs and arms were sore and tight, my head pounded and I was exhausted. Throughout the day anxiety grew, what if this happens again, will I really have a heart attack and die now with John doing so well, why am I this crazy when Mark is mostly okay. So I did some reading and in that reading I found some advice that to get through that acute stress time you have to keep your mind moving, you can't let it lock up like mine locked on those damn chairs. Still I was afraid to go to sleep that night. We kept John up way late, playing and giggling and having fun, before sleep Mark and I shared a devotion which oddly enough was about John the Baptizer, whom we named our John after. I finally fell asleep.

Sometime between 3 and 4 I woke up and there we were sitting in those damn chairs again, here comes the physicians assistant, Lord's prayer, I can remember the Lord's Prayer, okay the beginning of it, move to John's room in the PICU, more of the Lord's Prayer, giggling, he was giggling last night while Mark carried him back to bed, damn chairs, no, not the chairs, Creed, okay a bit, wait more, giggling, Lord's Prayer, Creed, giggling, and smiling and warm and breathing and the heater kicked off and there I can hear him breathing, Lord's Prayer, sleep, no racing heart, no sobbing and screaming, sleep, thank you God, thank you for sleep.

I am writing this on the night of the 17th, when I go to bed tonight I will be saying my prayers that when if I wake with a start in the night and find myself in those damn chairs that I won't stop there, just keep moving. Believe me I will be going to bed with pictures of John close to me and the Creed and Lord's Prayer on my lips as I drift off. Mark is on call this night and a few hours away. I don't expect this battle to be over soon, from what I read about Post Traumatic Stress I might fight this battle for my whole life, but that's okay, and despite this I am okay, and the sun will come up and go down and days and nights will pass and each time I find myself in those damn chairs again I pray that I can just keep moving.

In my searching, looking for help and answers to this I found information from vets and victims of crime and tragedies about post traumatic stress, that information was helpful, but I am putting this here just incase someone who needs it and wonders if they are crazy because they have not been through those 'big' things and yet PTS is there in their head, it happens to more than just vets and victims, it doesn't mean that you are bad or weak, just hurt, scars in our heads are so much harder to heal than scars in the body, just keep moving, don't get stuck in the damn chairs and if you do know that you're not alone, others of us have sat there too. Lord have mercy, Christ have mercy, Lord have mercy.

I Could Do this All Day

2011-11-20T18:22:00.000-08:00

So Not a Lap Dog

2011-11-19T18:22:00.000-08:00

Upside Down with Dad!

2011-11-18T18:20:00.000-08:00

Playing with Music in the Sunshine

2011-11-17T18:18:00.000-08:00

Cleaning under the Desk

2011-11-16T18:18:00.000-08:00

One Year From Transplant

2011-11-15T10:00:00.000-08:00

I have wracked my brains trying to figure out what to say on this day, here in this space. So many people who read this blog or come into contact with John have prayed for him and helped us through the years prior to transplant, the days of fear on the list, the abject terror of the surgery and days to follow, and through this year of learning and loving and watching John's life become something that we had never even hoped possible prior to this.

I do know that I very first want to say thank you to Charity Baker and her family. I will never in all the days that I live see a crash cart and not think of the comfort that she brought to me and to us standing in that hallway waiting and watching and hoping and praying that all the people around John could save him yet again for a few more hours. Prior to this I never realized that a friend could stand so close to my heart and know and be Christ's very hands to hold and comfort and His voice to sing in the face of darkest fear or laugh in relief when we realized we had been holding our breath for hours.

I wish that I could personally take flowers to the family of the little child who died, whose organs now live inside of John and keep him very much alive. I pray for them that at this time there are good memories to hold onto, family and friends who love and surround them and most of all that they have the Hope that their dear child is in heaven. Many of the dark days of John's hospitalization all I could even think was Lord have mercy, John is Baptized in Christ, Lord have mercy, and for this family I hope that they were given that sweet Hope

I would like to make a list of all the family and friends and medical people, many who have become friends, and the people around us who helped so much. No matter how I do it that list will always be missing a name or two and so instead of writing out that huge list, and it is huge, let me say thank you, you know who you are, many others know the mercy and love that you showed to us and God bless you in all you do. Please know that we wish we could visit each of you and let you enjoy the crazy silliness that is John's reality now and give you a big hug of thanks.

We have been asked by many if we are going to have a big celebration for John's 1st anniversary of his transplant and well no, we are going to get through the day being overwhelmed with thankfulness to God for His mercy to us and probably giggling at silly stuff that John does and tonight when we tuck him safely in bed, instead of sitting in a waiting room praying he will survive, that we will continue to pray Lord Have Mercy, Christ Have Mercy, Lord Have Mercy for all the days ahead, for all the other kids who are sick, for all the people who help them and for everyone we know and love.

Many times since John's transplant surgery the following paragraph has come to mind, it is the notes from the Lutheran Study Bible concerning the creation of the world in Genesis 1 and so I attach it here to share with you, and say thanks one more time for you are one of the good things in our lives, in John's life.

God's first act, the creation, is an act of grace. God acts freely to reflect His character, making the world "very good". Even after the fall and the coming of sin, much of the goodness that God built into creation remains. Philosophers debate why evil exists, and people ask how a good God could allow bad things to happen. But is is not the existence of evil and suffering that requires an explanation; it is the existence of goodness and beauty and love that is more remarkable. A world without God cannot explain such things. The persistence of goodness reminds us of what we have lost, but it also offers us a glimpse of God's grace and the everlasting glory to which God has called us through Christ.

Dancing with Dad

2011-11-14T18:16:00.000-08:00

Watching Shorty Dance

2011-11-13T18:15:00.000-08:00

Yes I Can Count to Five!!!

2011-11-12T18:14:00.000-08:00

Friends are the Best

2011-11-11T18:13:00.000-08:00

Blueberries are Yummy!

2011-11-10T18:12:00.000-08:00

Funny Faces

2011-11-09T18:11:00.000-08:00

Luigi

2011-11-08T18:10:00.001-08:00

Ready for Vacation

2011-09-17T13:30:00.000-07:00

John is so excited. Because we fly out at 6:30 am from Kansas City we are going to stay the night before in a motel with a swimming pool and go play, he is beside himself, we will be lucky to peel the swim suit off him before bed tonight.

Working Hard with Blue

2011-09-07T13:09:00.000-07:00

The walker came home yesterday. We named it Blue, and talk about it like it's a friend and at the same time like it's No. 7 off Grizzly Adams, but at any rate it is getting easier with each try and we are cheering and encouraging and helping and watching and being oh so impressed and amazed!

Just You Wait

2011-09-05T12:36:00.000-07:00

Over John's life I have found myself sitting and waiting for news, and healing and monitors, and lab results and waking up and all kinds of things that drive me crazy and to the foot of the cross all at the same time. Lately I have a new job of sitting and waiting and it just makes me smile, John has been sitting in his footplates and driving around for a while, he has even been finding places to stand up and walk a bit holding onto something and then sit back down and go somewhere else. Well now he is plotting up places to park his chair so that he can get out on his own and get to where he wants to go, he still needs a little help on the other end, so I find myself sitting on the foot of his bed or next to the potty with the hugest grin on my face as he parks and stands and walks to me and I sit with joy and wait.

Daddy's Graduation

2011-08-30T14:01:00.000-07:00

John was so thrilled and excited, both the night before we went to see Mark's graduation from his first unit of CPE (Clinical Pastoral Education) and during the ride over he kept signing 'John daddy's school', 'John daddy's friends' 'John chair fast daddy's school'.

We are so proud of him, I am so proud of him and the work he has done and that he is going back for another unit of what has to be the hardest educational experience I have ever seen just makes us more so. I was going to try to describe what the process of CPE is like from my admittedly outsider perspective but find that the words that I have just pale in comparison to what I have watched. The only thing I can say is that this is a course with no test, no term papers and no lectures, and more work, more pain and agony and more rewards than any classroom experience I have seen. I love you Mark, I'm so proud of you and God bless your efforts in this unit!

First Day of First Grade

2011-08-29T20:10:00.000-07:00

Our first day was full of fun stuff, taking down the sunflowers, watering plants, picking melons, counting black walnuts that John scooted around in his footplates to pick up from the park, writing letters in the dirt under the swings, reading Wind in the Willows, making leaf drawings, and looking at bugs and butterflies. We'll get to the actual books pretty soon, and we are both looking forward to it.

And We Cheered and Cheered

2011-08-27T16:58:00.000-07:00

Every child has that thing that they love to do and have been working at for a long time and then they finally find a way to make significant improvement, for John it is Mario Kart, he loves it, we love it, and yesterday he won his very first game, and then placed 4th in the series of 4 tracks, we cheered, oh how we cheered!

Joy Abounds

2011-08-26T14:30:00.000-07:00

This week we had two sets of appointments. The first to determine what equipment John needed to help forward his independence and it was decided that while we thought a manual wheelchair would be good a month or so ago that John had progressed enough that now what he needed was a walker with a seat so he could sit and rest when he needs too. We are thrilled, John is thrilled, and he even likes the idea of moving his power chair outside and using his walker inside. It's just amazing to us!

These pics are from Wednesday, what a joy to see him enjoying an ice cream cone and entertaining himself while waiting for food that he then eagerly dug into when it arrived.

Early Thursday morning we left for Omaha to see the transplant team. The trip up was fun and enjoyable even though our normal route is still flooded. We were a bit late but just in time to get to see our favorite GI doc who was just being sociable and hanging out in clinic. John is big and strong enough that I held one of his hands and we walked into clinic together while Mark was parking and then he got to hold one of Dr. Fischer's hands and walk with him and later walked out of clinic with Dr. Mercer, the surgeon who did his transplant and who cared for him both before and after. We got to visit with April and say hi to several other people and the smiles were irrepressible on every face that knew John.

He has now grown enough and is eating enough that they reduced his formula that he receives and put him on regular Flinstones Complete vitamins, this is just exciting to us. He goes back to Omaha sometime around the 1 year anniversary of his transplant and then they don't expect to see him except for annual, yes annual, checkups, it's amazing, beyond amazing.

We got to spend Thursday evening and night with our friends who have come so far with us, been so close to us and that we care so deeply for that we often forget they are 'just friends' and call them family. John was thrilled to get to play with the kids and we loved visiting and the little one even snuggled up with both of us and then this morning before we left made sure that John's hair was properly poofed for the road.

I was surprised on the way home how easy the tears flowed. It is so emotional to go to Omaha, so many times we made that trip just hoping for more news and another thing to do to keep John alive a little longer, and then came transplant and all the fear and compassion and mercy and visible miracles and now we come home with this amazing boy, this boy who is so close to the all important one year mark, with the boy who for the first time in his life we have real hope that we will see him as a teen and as an adult, the tears of joy mix with the tears for the family of the donor and in all of it is our hope in Christ and feelings that are just too big to keep inside.

To finish the day we stopped to get apples and peaches from the local orchard and then of course to retrieve our 'friend dog' from the vets office where she was being boarded. John was so happy to see her and we are so happy to be here, home, together with all these days of promise ahead.

A Reader

2011-08-25T12:57:00.000-07:00

Mark and I have one academic goal for John that he be literate, not just able to read the occasional box in the store, or newspaper column, but that he can read real books, classic literature, science journals or whatever his interest is and understand it and use the knowledge gleaned from it and enjoy the journey through the world that good books give us. He can read a bit now, a few words here and there and occasionally he surprises us and knows things that could only be gleaned from reading, but he certainly isn't reading to the level of the book in his hands yet, but he loves books, he pages through them, pretends to read them and brings them to us to have pages read and even has the patience to sit through longer books being read to him. This brings us great joy even when we would rather him not put his feet on the table.

Sink Boy

2011-08-24T12:55:00.000-07:00

The most amazing part of these pictures, John's standing on the floor!

We All Scream...

2011-08-23T12:53:00.000-07:00

...for frozen yogurt, ok so it doesn't rhyme, but it doesn't make John's tummy have troubles like ice cream does either. It took us a while to figure this trick out, but if we make yogurt from good milk, add some coconut milk, sugar and flavorings and turn it into frozen yogurt, John and obviously Mellon get to enjoy it without issues :)

Silly Pictures for Papa

2011-08-22T10:00:00.000-07:00

We were having fun while talking to Papa, Mark's dad, yesterday and took these pictures. I wish I could have gotten a picture of John's new trick, but I haven't quite figured out how to do that yet.

We love you Papa!

Shoe Shine Boys

2011-08-17T12:58:00.000-07:00

Dog Wash

2011-08-16T12:54:00.000-07:00

Not a day goes by that John and usually John and Mellon don't give us a good fit of giggles. John has always loved ice cream, it has never really loved him, but we did figure out that homemade frozen yogurt with no just plain milk in it works and he can enjoy the ice cream without the gassy consequences. Eating is still a new thing though and learning to balance quickly melting ice cream on a spoon when your motor control is not your strongest feature is a trick, but one which both John and then Mellon enjoyed.

What You Doing Butterfly?

2011-08-15T12:23:00.000-07:00

At one point this summer, early on, I was toying with the idea of us doing school, lots and lots of school to try to catch John up with all that he missed last year, well that has passed thankfully to the wayside and while we have done some school, mostly a bunch of reading and counting, we really enjoyed the butterflies.

We kept them in John's room and fed them orange slices everyday and since letting them go he has already asked a few times when we are going to get some more, so at some point I need to either catch or mail off for a few more caterpillars, it was loads of fun. The expression in the last picture just kills me, he reminds me so much of the little brother on Different Strokes sometimes in his expressions and this was one of those moments.

Gardening Success!

2011-08-14T12:16:00.000-07:00

Well okay nothing like real gardeners get, but compared to the one green bean and one sad little tomato that we managed to grow last year this has been a veritable bounty!

Not to mention just how much we have enjoyed it right up until I sprained my ankle of course, but that too shall pass and we will be right back out there enjoying it some more. The funniest part of all of this is John and the water hose. So far this summer he has watered one hearing aid to death, now he knows to take them out and give them to me before he gets the hose; he has watered his chair to the point where it had to dry out in the garage for a few days before either the seat or the controller was workable again and even now there are moments when the chair has flashbacks to it's recent drowning and starts beeping for no apparent reason, and of course he also watered his pants right off, that was just too funny when I came around the corner and he was happily watering himself with his pants on the ground, watered off and tossed to the side, ah who needs pants anyway.

Extra-Chair-icular Activities

2011-08-13T12:06:00.000-07:00

John and his power chair have been inseparable since they met until lately. Now it seems that he is finding his old friend to be somewhat limiting and we see him looking for more and more reasons to get out of it.

He figured out how to get down into the footplates by himself and at least several times a day is found sitting there sorting through or just plain getting into something. He also figured out how to put the chair in the right place so that he could get out on the footplates and then use a doorframe or edge of the table to stand up. He has for quite some time enjoyed 'dancing' in his chair, going in circles, bopping his head and feet to the music, but of late he asks for help to get out and either wants to dance with someone, like his cousin or one of us, or will even hold onto the chair and dance beside it.

We have loved seeing this and in conversations with various of his doctors have discussed putting him in a manual chair so that he has more direct control over his own movements. He has been fitted for one and this discussion will ensue in earnest later this month, but we got to trial out the chair in July and it left us wondering some things. Even in it he wants out to walk, or stand or whatever and we both really wish that we could find him a smaller version of a walker with a seat in it. He has been fitted for a walker that would fit behind him, and we just wonder what of this new equipment will give him the most freedom. He has new braces, shoe inserts actually, that he is getting adjusted too now that he has shoes that they will fit into. The last time he had braces the difference between how well he could walk with them on and without them was quite remarkable. Already without the braces we have seen him stand independently for seconds at a time and even take a few independent steps, so we wonder if the braces may eventually negate the need for other equipment. Mostly though we just stand and watch in amazement!

Visitors and Dancing :)

2011-08-12T12:03:00.000-07:00

Part of our summer has been getting to enjoy some family time. First my mom came to visit for a few days and we ended the visit with her by driving to St. Louis and getting to meet my cousins daughter for the first time and for them to meet John for the first time. We had a great time at the St. Louis Zoo with grandma and cousins. Then Mark's brother, Paul, and his oldest son, Isaac, stayed with us a few days during their motorcycle vacation. John loves having someone to play with and having a nice tall cousin to dance with was fun!

Growing All The Time

2011-08-11T11:58:00.000-07:00

I wouldn't ordinarily put pictures of my bathroom on the internet, it's nothing special but the little boy standing in it who can now reach the sink to wash his hands all by himself is!

These pictures were actually taken over a month ago and since them he has shown us that he can use the light switch at the back of the counter and get out his own toothbrush and toothpaste and use the counter to walk from the bathroom door to the potty by himself. I was watching him stand up last night holding onto the window that you can't see in the picture but is next to the potty and realized that if his heels were up agains the wall and he was standing up nice and straight his head would be right at the sill of the window. Out of curiosity I got the tape measure and that sill is 43" from the floor, just amazing!

Gravity Defying Dog ... or

2011-08-10T11:45:00.000-07:00

...Camera Genius of a Silly Boy?

Summer is flying by us. Days and weeks slip past without me even realizing they have come and gone. Partly this is due to Mark taking CPE (classes that will eventually allow him to be a hospital chaplain) in Kansas City and being gone from 6am to well after 6pm most days, and overnights and whole days the rest of the time along with keeping up with his two churches. The other part of this is just how easy it is to care for John now, meds in the morning, meds at night, hooked up to his formula pump for 8 hours or less at night and other than that just being a little boy, well a bigger little boy all the time. I sprained my ankle last week and am on the tail end of having to sit with it propped up with ice on it for parts of the day so thought that I would take this time to blog some and catch up on the pictures in the camera and the stories of a silly boy and these will post in the coming days. I've spent this week knitting a gift, knitting a sock that has more complicated cables than I've ever attempted before for my sweet husband who has a new found love for dress clothes and getting stuff ready for school to start in the fall, oh and taking my turn at Mario Kart, thanks mom for sending that!

I'm not sure why but I love this picture that John took of the bells at our back door, it definitely shows the wear that the bells have had on the wall and door and the wear that the bells have had from the boy and dog, but still I just love it. Mellon is bell trained, as in when she needs to go outside she goes and rings the bells, she is also knock-on-the-window trained because when she is outside enjoying herself chasing squirrels or digging to China and John wants her to come back in he goes and knocks on the back door and she comes and sits there and waits for him to let her in. They have become quite the pair over the summer and while not always together the times that they are seem to cause more giggles and smiles all the time and the chasing, oh how we love the chasing :)

Manual Chair Try Out

2011-07-26T10:31:00.001-07:00

The picture isn't very clear, but even with the fuzz I think the excitement is clear! We met with the man who would write the paperwork for this chair for John a few days later and he told me that he has written paperwork for kids that he has wondered whether they could handle the equipment that was being ordered but not this time, John was thrilled and already wheeling it around turning corners and circles. John is looking forward to this smaller chair, it will fit into the bathroom so that he can start gaining more independence there and will also fit into friends houses that his power chair is just too gigantic for. He wants to learn to spin it fast and to play basketball in it. Often times now we see him sitting in the foot plates of his power chair, or asking to get out to dance and do other things, it's like the chair if becoming too confining and he is seeking more freedom, which of course is just amazing to watch!

He is going to be getting a walker too, it should look something like this...

Walker

and in a conversation with his physical therapist who had seen him before transplant I asked her if she thought he would walk faster if we started coming to therapy and she said 'no' he doesn't need therapy he just needs practice. We are so excited that he is doing so well and while I have tons of other pictures and stuff to tell about how he's doing mostly I'm just busy keeping up with him :)

Daddy's Glasses

2011-07-12T11:39:00.000-07:00

I haven't been very good at keeping up with this lately, it's not because John is sick, actually it's quite the opposite, John is doing amazing and each day finds him doing more and more stuff, so really instead of blogging I've been keeping up with John. We still haven't gotten pictures of him walking, sorry Papa, I'm working on that, maybe while Paul and Isaac are here this afternoon we will be able to do that.

Wracking Our Brains

2011-06-24T14:29:00.000-07:00

Dr. Mercer said that we should expect that it would take John a full calendar year to catch up to where he was when he went in for surgery. Surgery was November 15th through the night to the 16th and this is just June 25th, a mere 7 months and 10 days later and Mark and I are wracking our brains trying to remember what John could do before he went for transplant that he can't do now. Funny Dr. Mercer's peers seem to think that he tends to be unrealistically optimistic at times, seems to me like they need to give him a break :)

Outside is Home Too!

2011-06-14T19:23:00.000-07:00

For years I haven't had the energy to do much more than take care of John, make sure he had meds and such, and read him some books. Since changing diet and giving up grains I find that I have more and more energy as the days go by and lately have started planting things outside, I have found my love for outside again. I love to see the little flowers and the butterflies, the bees and all the different leaves and such and so end up spending a good bit of each day outside. Poor John, he is 7 and his mommy just now wants to be outside and he just isn't sure that outside is home too. But every time he gets a chance to play in the dirt he is happy to be outside too :)

This is the box garden on the front of the house, constructed so that it was the right height for John to play in too. Underneath of it is the beginnings of a whole bunch of flowers that my mom sent me for Mother's Day in a roll, and the mum from Mark's mom's funeral and in the bottom right side of the picture you can see the sunflowers that Mark and John planted.

Our friends son did a lot of hard work helping us to remove the bushes in the front of the house. In their place is one of my all time favorite bushes, a little snowball bush growing bit by bit every day to fill our bedroom window with it's beautiful flowers, meanwhile around it is also cantaloupe to fill the space this summer and hopefully provide some yummy stuff too!

John loves to play in the dirt and he was enjoying himself enough today to stay and play even after I had finished adding some new plants. The side will eventually be full of flowers and elephant ears and will make me smile just to see it, today John makes me smile, well okay every day he does that.

Along the back are more flowers, Columbines which remind me of my beloved mountains, and others that draw hummingbirds and butterflies, my hope is that as they grow up John's window will always have a delight of life teeming right outside of it.

One last picture of the boy who was having so much fun in the dirt and one of my favorite flowers. I am so thankful that we have found this way for me to have more energy to enjoy more of life and to enjoy more of John too, now if the poor kid can ever get it through his head that outside is home too, we'll know that I've finally hung around out there long enough, nah, there's always another place to plant another flower :)

Chocolate Makes Me Smile

2011-06-13T19:19:00.000-07:00

But not quite as much as chocolate on my guys makes me smile. John has been eating some at every meal, just a few bites at each but that is a huge big deal for him. Today I made vanilla cupcakes with chocolate frosting and John just loved it, well the frosting anyway. He was having such a good time and ended up with chocolate all over his face, he was even more delighted when daddy rubbed some chocolate on his own face to take a picture with him.

Fireworks Parts 2 and 3

2011-06-12T19:17:00.000-07:00

John has been enjoying art so much, so have I. Here he is with the papers that we painted to makes the fireworks themselves with.

The next day we cut them into bits and I asked if he wanted to take a picture with them, he did, but the silly thing didn't realize we would want to see his face too :)

First Day of School

2011-06-07T14:10:00.000-07:00

John missed so much school this past year that we decided it would be best for him to get to do school through the summer, and yes I said 'get' instead of 'have'. John enjoys school for the most part and has shown more patience for it today than when we were doing school last year. I think part of that is just maturity, it also helps that he is not sick and in pain. John likes school, consequently so do we. Of course we did the Three R's, but what fun would school be without an art project, so inspired by this art project we are working on a fireworks picture, fireworks being one of John's favorite activities and more boy than poppies.

He was very insistent that we take a picture of the art work itself, which of course is no where near accomplished but still, he was ready to share it today, so here he is and here is his pictures we are working on.

I had toyed with doing some specific fine motor skill work, but decided that drill and kill is no fun, and so instead we are practicing writing and painting and the next days will bring cutting and tracing and all that stuff that will help him get his hands working better. We are both looking forward to what the days of school ahead hold.

The Promise of Life

2011-06-03T20:02:00.000-07:00

I bought this parsley plant because of the nice big caterpillar crawling on it in hopes that we would be able to watch it become a moth or butterfly. It was only a few days after I brought it home that I was worried the little thing had died cause it was so still and then the next morning found this...

John and Mark were both mildly interested, I was excited because of course it's science/nature stuff. One afternoon I was getting ready to make supper and the fluttering caught my eye, voila, the promise of life was revealed and a beautiful butterfly was trying to get out of our window. I wish that I could have watched escape it's crysalyis, but getting to see it fly free outside was amazing and we will definitely be doing this again. Now of course to identify the butterfly, more fun!

Filthy Little Boy

2011-06-02T19:59:00.000-07:00

The pictures don't show the extent of it, but after playing in the dirt helping daddy plant flowers and then chasing the dog back and forth through the backyard and other fun stuff John was filthy and needed a bath before bed. It is just so very cool that he was really dirty, from really playing and having a good time!

Another John's Eye View

2011-06-01T19:57:00.000-07:00

I love seeing the world through John's eyes, I am looking forward to the day that I'm brave enough to let him take my camera outside, but for today I have these.

Soccer Boy

2011-05-31T19:49:00.000-07:00

A couple Saturday's ago John got to go meet the people who play soccer in Columbia, he was excited, as were we. His chair is not made for soccer, the big wheel makes it too slow and there is some concern that it will climb the ball and make the chair flip. For playing there is a chair he can borrow that is his size and left handed. But for this day they had us put him in a large chair and we didn't realize until he ran into the third or fourth thing that it was also right handed.

After figuring out that the bigger chair just was not going to work, we put John back in his own chair and things were much more fun for him. He played around with the ball and other people for the better part of two hours and the adults who will be playing on the team were impressed that he enjoyed it enough to keep playing with them and not wander off and do something else.

Next Sunday is his first real practice and soon Grandma is ordering him a soccer ball to practice at home and of course I will remember to take the camera.

Our Redeemer Lives with an Evil Eye

2011-05-29T08:54:00.000-07:00

Last week was nuts, John's cold/allergies whatever let him sleep last night though and so this morning even with a bit of a snotty nose left he is even nuttier, if that was possible. It's all in a good way, well okay except feet do not belong on walls, pulling fronds off the palm at church isn't good, wiggling so much that you are practically rocking the pew during liturgy is funny but just not right and finally while were singing I Know That My Redeemer Lives I realized that I was singing it the whole time giving John the evil eye, as in stop it, don't make your chair go back and forth, quit pulling the fronds off, stop playing with the power cord, stop turning it on and off and please don't honk again. These are the kinds of problems that I love to have, they make my day, he has a face full of rotten and ornery and I just love it. Of course I still have the cold/allergies and feel like I just want to lay down and sleep, but of course since I want a house left later this afternoon I think I'll just sit here and type :)

Phew, What a Week!

2011-05-27T11:23:00.000-07:00

Let's start with John is fine, okay he has some allergy/cold thing going on and is a bit miserable at the moment, but in the grand scheme of things a cold or allergies is just a little thing and the misery from it so fleeting as to not really matter.

Sunday our friends Angie and Larry Sipe and their 6 children arrived. It has been a good while since we last visited and this was to be a special week because Larry and Mark would be heading off to St. Louis on Monday morning to go to a week long training for Police Chaplains. Well they still headed out and went to the class, but of course not before we took John to the hospital Sunday night. It was par for the course, he has been hospitalized ever single time that his godparents have come to see him. Every. Single. Time.

John's blood pressure was too high, much too high, and so he spent Sunday night and most of Monday getting that straightened out and then just as it was time for us to leave we saw more blood in his ostomy bag. We had seen some anyway, and we all just thought it was a surface thing and weren't too freaked out about it. Well truthfully I was freaked out about it but everyone else was calm until the blood Monday afternoon and then they were freaked out too. The doctor took pictures of John's stoma and sent them to the GI doctor in Omaha, who agreed with the surgeon from Columbia who came by to see John that it was just a surface thing and there was no need to rush him to Omaha. John was discharged form the hospital in Columbia and we got to come home to a house full of friends :)

Tuesday morning it became apparent that he needed to be seen in clinic in Omaha on Thursday and by afternoon we hatched a plan to go invade Charity's house. So Wednesday after breakfast we loaded up, Angie and her six kids, John and I and went to Charity's and got to spend a nice evening visiting. Thursday I took John into Columbia, was so wild in clinic that the doctor took one look at him, told us to have his scope done and then take him home and good luck, lol, it was nice to see them get to see John at full tilt.

The scope was to see if the bleeding was indeed just a surface issue or if John was having a rejection or other bowel issue that would be much more serious. I saw enough blood in the PICU that even though I was pretty sure that this was a surface issue it was still a great relief when Dr. Fischer told me that his bowel looked perfect! He took biopsys and we will find out about those in a few days, but he's not expecting any issues to arise.

Angie and I got back last night, finally got kids fed, 1 medicated and all in bed by 10 and then basically fell over. The Sipes are headed off for the rest of their vacation today, Mark is on his way home and John and I are just hanging out, glad to be home and not scared or worried that something is wrong. Praise God for His Mercy, both in John's health, our salvation and the level of sanity that we retain.

Hungarian Bookshelves

2011-05-22T10:19:00.000-07:00

We love books! Any one who knows us knows this, and we are always looking for better ways to store them. Our living room is basically bookshelves with a couch and tv, and John's room had a huge shelf too. The problem with lots of store bought shelves is that they bow and eventually fall apart, and so we were looking for a way to build them in without having all the fancy dancy book shelf stuff, as we want the books to be seen and the shelf to be just that a shelf. We found directions for a Hungarian Bookshelf on the internet and decided to test it in John's room as his shelves were made, but the span was too long and the boards were starting to bow with the old way that they were put up. So Mark constructed these, and if by fall, when he'll have more time, they still look this good he'll be making more for the living room, our room, and the study/sewing room.

Treats for Boy and Dog

2011-05-21T10:12:00.000-07:00

I love our refrigerator, just love it, especially when there are doggie cookies in there and John is taking care of his dog :) As much as the dog absolutely loves getting cookies, the little boy loves giving them, not to mention how much fun it is to watch them do this.

Round and Round

2011-05-20T10:10:00.000-07:00

I don't know what the sign for carousel is, I should look that up, but for now whenever we get to the part of Columbia that has the mall in it John is eagerly signing 'round and round' for a carousel ride and then of course 'game' for Game Stop.

Art and Medicine

2011-05-19T15:56:00.000-07:00

We have often been told and talked about how medicine is as much art as it is science. We were privileged to spend part of one of John's hospitalized days enjoying a young artist who is determined to use her talents in art to help those who are sick and in need of medicine. We were thrilled to go see her art put on permanent display at the Children's Hospital and of course everyone was amazed to see John and how big and healthy looking he is.

This is John's Tiger, ok I know that actually it is someone in a suit being the mascot for the Children's Hospital, but really this is John's tiger and he was oh so very thrilled to be walked down to the quilt by his Tiger. Just as thrilling later for Mark and I after this picture and the next few were taken was that John turned around to the little boy that you see behind him in this picture and they decided to play together, and then spent several happy minutes chasing and running up and down this hallway. We have never seen John initiate playing with an unknown child before and it was just great to see. The two of them lit up every face in the place.

This is the artist who designed and carried out the quilt, including spending time with John and the other children and learning to quilt so that she could finish her project. When we walked up she was so excited to have pictures taken with John, whom she called the artist, and to point out his two drawings and the piece that I wrote for her. It was neat to see her so excited, the official photographer was taking pictures, but before it was done she made sure that her mom got one of her and John too.

Here is the quilt. Mark was concerned about the reflection but I only think that adds to it.

This is the picture that John drew in the hospital, I wish I knew what it was and I wish I understood what the DOX were for, but I do know that he enjoyed doing it and it brought a nice respite in a day that was otherwise pretty painful for him.

This is John's self-portait that he had made previous to going into the hospital, and when the artist saw this she was thrilled and determined that it be part of her final work.

Finally this is my piece, she asked that I write something about hope and so I did. We were happy to participate and happy to help her celebrate the day her art was displayed. And anyone who comes to visit and wants to see, John will be absolutely thrilled to take you down the hallway at his Tiger hospital and show you, as will we.

Hole in the Wall

2011-05-18T20:04:00.000-07:00

The upper hole was punched in the wall by the door knob long before John was even born. It was in a seldom used room and then we were so busy keeping up with John that repairing it just never got to the top of the to-do list. Once John had his power chair and a little energy he loved it and started shoving stuff in it, planning it's enlargement and then attempting to enlarge it. Well today was the last straw when he came out and told me that he had put his iPod in the hole. Well the bottom hole was made by dad rescuing the iPod which was merrily singing away inside the wall blissfully unaware of it's fate. Well we found way way more than just the iPod, which by the way is now going to live safely on the counter for a few days until both the hole has been repaired and the boy gets a little sense, well we hope he does anyway :)

Bubble Dog

2011-05-17T19:58:00.000-07:00

John loves bubbles, he has always loved them and he can sign it and make the bu bu bu sound all with a huge grin and eyes alight with glee. Unfortunately John can't blow hard enough or with enough control bubbles on his own, so he always needs some help and today his helper had a great time and then of course the dog had fun too!

Return of Old Abilities

2011-05-16T19:56:00.000-07:00

It took John quite some time to recoup this skill, but we are oh so very thankful that it is back, and so is he. Independence is so much fun!

A John's Eye View

2011-05-15T19:50:00.000-07:00

John got a hold of my camera a few days ago and of the 20 something pic he took, I thought these showed a good look at the world from his point of view. Of course this was all done in about 5 minutes at breakfast, lol, we do go in other rooms of the house.

Waiting For Dad

2011-05-14T16:18:00.000-07:00

Sometimes when waiting for Mark to unload the chair little boys just have to find something to do to pass the time :)

A Different Kind of ER Trip

2011-05-10T09:27:00.000-07:00

Let me start this with John is fine. Now I'll tell you what happened and what is and will be happening.

John has worn a Clonidine patch since he was still intubated and in the PICU, it is medicine for his blood pressure and also an anti-anxiety medication, a mild sedative type thing. At that point he needed it, he was freaking out about every light change, noise, or new person that might come in his room or talk too close to his open door. Even at our last appointment we were thinking that there really was no need to change this now. Sometime last week the patch fell off. We have no idea when, what we do know is that by Thursday and Friday we had an almost different kid, so much more energy, ability with everything and wow, just so on all the time. No need for a nap, run, run, run, he was learning things faster, sitting up straighter and everything was way so very very cool, instead of like all the lights were on in there it was like the sun itself was shining in there. Saturday morning when we went to change his patch, this is the normal day, it was gone, so I took his blood pressure, it was a little high but nothing to run to the ER about and put on his new patch. Through the day on Saturday we still had this amazing way more John, whizzing quickly through our house. He slept through the night Saturday night and on Sunday I had to go wake him up, this is strange, and he was so very groggy.

We walked to church and I thought he was leaning and keeping his eyes mostly closed against the sun that was shining in our face, but during church he just sat there and finally asked if I would please just hold him. At the end he wasn't really interested in going and shaking people's hands and even though his friend wasn't there for Sunday School and we did it anyway there was no sparkle, no enthusiasm, no real interest other than just to be there. Mark was gone by this time, he had already noticed that John was down too, but had to go to the country church and when we finished Sunday School John and I walked home. He could barely keep up with me, didn't run over sticks, had no pleasure in spinning circles in the loose dirt and didn't even notice that there was water to run through, just plodded along home, where he just sat and watched tv and didn't even care to choose the show. By the time Mark got home I was beyond just a little worried. We figured it was the patch, nothing else was wrong, no indication that he was sick at all, just this lethargic uninterested noodle of a boy sitting idly in his chair like nothing interested him at all. We put him down for a nap and called Omaha. They said take him in if we thought it was necessary and they would readdress drugs on Monday.

We loaded John up for the ER, he sat all the way to town, never tried to roll down the window, never changed the movie or flipped through it, never asked for a drink, or kicked his feet into the back of the driver's seat, just sat there. When we got to the hospital he told us we were at the Tiger hospital and plodded in. We were there from about 3p to well after 9 that night and finally about 8 John smiled for the first time that day. Everything checked out, labs were fine, blood pressure was fine, everything was fine and it was definitely the meds. We knew this going in, but we had to make sure and were relieved and determined that John be taken off this medication.

Monday came and the docs came up with a weaning plan. So John is now on a half dose this week, he is acting way better than Sunday and a little better than his normal with the full dose but no where near the sparkly whizzing speed demon that he was on Thursday and Friday. If his blood pressure stays steady through the week he will go to 1/2 of this dose next week and if he remains stable will come off this drug completely at the end of that week. If he needs blood pressure medication they will move him to an oral med that doesn't have the sedative side effect to it. John understands this and is glad that the medication is going away, Mark and I are excited, we can't wait, we also know that full time John with that new energy level is going to be a handful and will need many more things to direct his attention and keep him busy but who cares, just to see him so very very alive, almost on fire, is so amazing, it's so very different than anything we have seen of him in his whole life and yet it's something that we've always seen a spark of here and there, we are eagerly awaiting the return of the full glow!

The Trash Man Cometh

2011-05-07T15:01:00.000-07:00

John is being raised by really weird parents, Santa Claus comes to take pictures with him at the hospital and he doesn't really care so much, even when he feels good enough to participate, other kids await the Easter Bunny and John doesn't really care, Halloween comes and goes without costumes or candy or concern, but oh boy when the trash man comes then we care :)

Sink Fixing Guys

2011-05-06T14:59:00.000-07:00

The sprayer on my sink broke a few days ago and today Mark had time to fix it, he also had plenty of help...

...and of course after the two guys were finished fixing the sink they decided to tackle the dog :)

Shut-Up Dog

2011-05-05T17:51:00.000-07:00

The dog was barking and John was bound and determined that she shut-up now, silly dog, of course this is a near nightly show, but still she barks and he knocks, and we giggle.

New Cub Scout Shirt

2011-05-04T17:47:00.000-07:00

John is beyond excited about Cub Scouts. He is practicing his salute, which is rather difficult for him as he is so very very left handed to start with and his right hand is still very weak, but he went tearing into our room where there is a cross with a flag on it and was showing us that he was saluting. Of course today he is driving around with his Tiger Cub hat on sideways like Will Smith in Prince of BelAir and Mark is teasing him about earning the Untrainable badge, John doesn't care, he's too excited.

Sometimes You Just Don't Get What You Expect...

2011-05-03T19:39:00.001-07:00

...and other times you get more. In our life right now we are seeing this in two distinctly different things that are working out so very well together.

We didn't expect that as John got better and stronger and well just more John every day that our calendars would get more and more full, it's not doctors appointments now, it's Cub Scout meetings and hikes and such, Sunday School that now needs to be done more than ever, power wheel chair soccer coming up fast and while we thought we would put off school until the fall, and we will most of it, but some little things have got to be added in just to give the boy some more stuff to do. This is fun, and crazy and wild and we like it :)

The other thing we didn't expect was that we would change diets and make a major discovery that would start to make everything better and more doable. Mark and I have both been just feeling run down and achy and tired since coming home from the hospital and so after listening to our friends talk about diet stuff and reading some more ourselves we decided to give up all grains, legumes and sugar for 30 days to see if we would start feeling better. We are. What we didn't expect was what it would do for Mark. His stomach hurts less and less by the day and at times not at all. From everything we've read now it looks like Mark probably is allergic or intolerant of wheat/gluten stuff and the stomach/gut ache he's had his entire life is from that. You can hear how much better he feels in his voice and see it in all the things that get done around here and in just how much happier he is. So we are learning to make pancakes out of almond flour, eat lots of veggies even for breakfast and do all kinds of other cooking we would have never thought of even 2 weeks ago.

In both of these our lives have changed a lot, and all for the better even if there is adjusting to do!

A Good Life

2011-05-02T13:02:00.000-07:00

John saw Mark head out to work on the Jeep, tossed his Wii remote aside and headed out to be with dad. While Mark is gone John collects his stuff, when Mark returned last night John was wearing both Mark's pectoral cross and his MP3 player. When I was a girl and thought of what kind of man that I wanted to marry it was always thoughts of someone who had hands to do strong things, like work on cars and fix things, and hands that were gentle to hold and love a child. Dreams do come true, and this is a good life, a very good life indeed.

The Smirk of a Dog

2011-04-30T19:17:00.000-07:00

John had a great time this morning hanging outside with Mark, as Mark was getting a pork butt started in the smoker and various other outdoorish things. John followed his dad around for a while and then decided it was more fun to go play with things in the back yard.

Shortly after this he was trying to 'shovel' something, we have no snow and no piles of manure and somehow the grass wasn't as easy to 'shovel' as he thought it should be so he came back for a second toy, um tool.

As he was trying to use this one I do believe Mellon was smirking at him, heck she might have been straight up laughing, but that didn't last for long. You can see that he wasn't quite as effective as one would hope with this tool either, so he gave that effort up and decided to lead Mellon around the yard with her chain, by the time he was done with this Mark had to flip his chair over on it's side to get the dog chain out of the drive wheel of the chair. I'm pretty sure the dog would have been smirking then too if she wasn't so relieved to be removed from the grasp of the boy.

It's been a record setting day around here, the sprayer on the kitchen sink broke, John was standing up in his chair and then laying on the floor face first as he tried to go backwards fast while standing, the shelf above my desk proved that it needed to have a few more braces and so had to be emptied, John was enthusiastically driving through the kitchen, doing what looked like a soccer kick and broke the kitchen cabinet door and to finish off the night the only light in the garage where the pork butt is smelling yummier by the hour blew out. Still we end this day with smiles all around, John is transitioning onto new formula without a hitch, he is bigger and has more energy by the day and tonight it was really nice to be able to load the materials for tomorrows Sunday school lesson into the bag that we got from the hospital in Omaha to keep John's discharge papers - many days I sat looking at that bag, it reads transplantlife.com, wondering if we had just transplanted John's death, and now I am taking the gospel to church in it to share with John and his little Sunday School friends.

Parent Network of Mid Missouri

2011-04-29T10:13:00.000-07:00

In visiting with the power soccer guy we found out about the Services for Independent Living in Columbia starting a parenting support group and I was invited to attend their meetings and be part of the group setting this up. The first meeting was yesterday and because of scheduling conflicts John came with me and sat through a 2 hour meeting, I was amazed and impressed with how well he behaved, having to adjust the volume on his DS and iPod only a few times and he reserved all honking and table slapping until the last few minutes, phew, by that time it was time to escape anyway.

The group itself is still in the works but they/we are trying to build something to help parents of disabled children (no matter the children's age) and others who love and care for disabled children help them be as independent as they can be. It's also going to be a support group for the parents because raising a disabled child is amazing and wonderful and a blessing beyond measure, but it also has a tendency to isolate and separate one from the rest of the world, especially if they don't have amazing friends that share other parts of their common life, faith, homeschooling or such. We are very blessed with relationships that support us and keep us going and we are looking forward to being able to share and help and support other parents who aren't so blessed with such wonderful friends and family.

Eventually there will be more information about Parent Network, facebook pages, websites, and the like, for today if you are interested contact me and I'll help you get connected.

Power Soccer

2011-04-26T17:47:00.001-07:00

Today John had his cytogam infusion, all went well despite having to be poked 3 times for an IV. He weighed 52 pounds today, that's just huge! After his infusion we went to meet the man in charge of power soccer. We had a nice visit and we are looking forward to May 21st when there is a big exhibition and he will get to play some and see if he wants to do this - I can't imagine that he wouldn't.

Cub Scouts

2011-04-25T19:13:00.000-07:00

Tonight Mark took John to his first ever Cub Scout meeting. John had a great time, as did Mark, and we are looking forward to helping John learn and grow and enjoy Scouts - we're also quite thankful that we have all summer to learn to put the pledges and such into sign, phew!

Tucked In Shirt

2011-04-21T16:29:00.000-07:00

Ok, ok, I know everyone else is posting Maundy Thursday posts, at this point I'm assuming you've been to church and/or read a bunch of their posts, if you haven't you should.

What I'm here to tell you is just amusing. Since John's transplant his body has changed shape enough that it is now feasible and even desirable to teach him to tuck in his shirt, well ok, I tucked his shirt in tonight, but my point is it looks really cute, only thing I hadn't thought of is what you can do when your shirt is tucked in, at least I hadn't thought about it until I looked down at my sweet little boy leaning against the pew in a really cool slouch with both hands shoved in his pockets. These moments of normal just make me smile, and say Lord have Mercy, thank you.

The Yellow Boat Quilt

2011-04-20T09:29:00.000-07:00

The talents and artwork of 30 Children's Hospital patients (John has 2 pictures in the blue section) will be displayed permanently at Children's Hospital beginning May 12 (yes, we plan to be there). Dawn Sees, a graduate student in the University of Missouri's College of Education, shared the story of "The Yellow Boat" with patients at Children's Hospital. After hearing the story, they created small quilt squares expressing what made them happy, and Sees sewed the squares into a quilt. The four-foot-by-six0foot quilt was first displayed during the PACE Youth Theatre's Arts in Health theater production of "The Yellow Boat" in January. the play was written by David Saar as a way to celebrate his son's life. Born with congenital hemophilia, Benjamin Saar contracted HIV through a blood transfusion. He lost his battle with AIDS at the age of 8. A gifted artist, Benjamin channeled his physical and emotional pain into colorful and imaginative drawings. The Yellow Boat Quilt at Children's Hospital will serve as an example of how powerful art can be in the healing and recovery of patients. It will be dedicated to the patients, families, staff and volunteers at Children's Hospital.

This artist came to John's room when he was in Children's with his bowel bleeding and in pain prior to his transplant last fall. She was a delight to work with and brightened both John's and my day considerably with the whole process of the art itself and getting to enjoy hearing about the project and what her plans were with it. While we think it cool that John has two squares in here, we are mostly excited that he got to enjoy that day and take part in something that will bring smiles to others for years to come. God has blessed us in many many ways, and on that day, he blessed us to meet an artist who wanted to use her God-given talents to help others.

Food Therapy?

2011-04-19T20:29:00.000-07:00

"How good one feels when one is full -- how satisfied with ourselves and with the world! People who have tried it, tell me that a clear conscience makes you very happy and contented; but a full stomach does the business quite as well, and is cheaper, and more easily obtained. One feels so forgiving and generous after a substantial and well-digested meal -- so noble-minded, so kindly-hearted." This is from Three Men in a Boat and it was too funny not to share :)

Faith and Medicine

2011-04-18T18:59:00.000-07:00

We took a long weekend to go to Nebraska and enjoy getting to see our friends oldest daughter confess her faith. It was so great to be in the midst of our friends and their family as we celebrated with Adri, and at the same time we were thinking of Isaac and being so happy and proud of him for confessing his faith in confirmation this Sunday too. Now each time we celebrate the Lord's Supper the table is increased by two and we will confess our faith with these two young people who are dear to us.

While in Nebraska we were also there for John's clinic appointment. It was amazing! John has gained over a kilogram, 2.2 pounds, since his last appointment like 5 weeks ago. He is doing so well that he does not have to return for another clinic appointment for 3 months, the longest he has ever been between clinic appointments in his entire life. He also gets to have labs drawn every other week instead of every week and 2 of his anti-rejection drugs are being lowered. Amazing news, just amazing. He made this whole trip with no problems whatsoever, had a wonderful time and of course I took the camera with me and completely forgot that I did and never took it out of the truck. Friends will post pics on Facebook eventually and I will link to them there.

A Boy and His Dog

2011-04-14T10:00:00.000-07:00

This is of course the same dog that came right up and snurffled him immediately when we met her, and the same one who if he reaches out and grabs her collar he can drag around the house, the same one who gets locked in her box by a squealing happy boy and the same one who is eager to see same silly boy when he gets home from wherever he has gone. I cannot imagine a house without a dog, this one is particularly good, if yet still young and a little on the too eager side. We still hope to see her be John's helper in future, and the other day when I was helping him walk from bathroom to bedroom he reached out and grabbed her collar, walking with one hand holding onto Mellon and one hand holding on to me and we cheered!

We Were Robbed...

2011-04-13T10:00:00.000-07:00

...or at least I was! Before you panic this has NOTHING to do with John, our house, cars or anything else but with my education and specifically my education in English literature, sigh, just robbed.

Thanks to Woman of the House and her weekly reading challenges, I have been finding more and more books to read. The latest is Three Men in a Boat by Jerome K. Jerome. It is hilarious. It is so funny that I end up reading passages of it to Mark because he comes to find out what I'm rolling around laughing about, at times enough I can't breathe. The book was originally published in 1889 and while I'm not exactly sure that a publishing date makes something classic, it certainly makes it old and the definition of classic seems to be a moving target anyhow.

So you are wondering about the robbing, well if we had read this in High School English class instead of some other books my love for classic literature could have been fostered at a much younger age. This is certainly not dry, nor boring, nor is it a long treatise on depressing subjects that left me wondering why all the characters of the book didn't just leap from the nearest ledge. In a world of homeschool mommies who tout classic books here and there I often feel like the lone hold out. I certainly see the value in some classics, Lord of the Flies should be required reading for everyone who deals with children, most especially boys, and even more especially other people's boys. To Kill a Mockingbird certainly shouldn't be missed, and I even have fond memories of Old Man in the Sea. But books, which others admittedly love, like Silas Marner and Ethan Frome, made me positive that while I should read the classics I had little desire to actually do so.

This book Three Men in a Boat actually gives me hope for delving into more classics over time. I have always thought I should, but now I find more 'want to' and in the end 'want to' gets me a lot farther than 'should' ever did. I do not believe that my English teacher did something wrong, personally, I am positive that she chose books that she herself loved and that moved her, but it does make me realize the limitations of 35 kids in one literature class and thankful that when it comes time to get John motivated to read the classics that I will get to tailor our reading to his sense of humor and taste and eventually broaden his education by choosing things that fit him and lead him in, instead of ones that fit me or a set curriculum.

Around and Around We Go

2011-04-12T11:18:00.000-07:00

Yesterday was errand day. One of them was a venture into the mall so that I could retrieve my latest idea on recipe storage from Barnes and Noble and while there John got to have his first, and second, carousel rides. He loved it, absolutely loved it and I am positive that we will be making stops at the mall on every errand day that we can figure time to into, and we will plan ahead :)

It is funny how life goes around, well maybe not funny. Yesterday was so good, John had energy and was funny and felt good and laughed and carried on even late on the way home when he was tired from a full day with no nap. A good day, yet when I was putting him to bed I was watching liquid and bubbles just pour out of his ostomy. Increased output is the first sign of rejection, I was paralyzed by this, just watching, finally I was able to break and read John his books, say prayers and empty the bag - the output for the day was really not up anymore than it ever is on Monday and Tuesday when he takes one of his antibiotics. Today things are just fine. Last night I could see the stuff pouring out of his ostomy as real as I could see Stargate on TV or anything in the house, like I could see the ostomy played like a film over the other things I was looking at. As I was falling asleep I kept repeating the Kyrie to myself. When John woke at 2am to go potty and then couldn't go back to sleep neither could I. Finally at 5:30a I went back in there for the umpteenth time, John signed 'drink' and I reached over to unplug his formula pump and he smiled, signed 'daddy' and grabbed his monkey. I picked up him and his stuff and took him in to Mark and laid him in Mark's arm and John was sound asleep within minutes and slept for hours. I told Mark that I think he is our security blanket, John and I both slept next to him and slept, where we couldn't find a way to fall asleep before.

I find myself thinking about life and how great it is with John doing so well and then just around the bend I am scared to death and then comforted by God's gift of a wonderful husband. Lord I believe, help though my unbelief, and thanks for the big guy in the other room, he's the greatest.

Traveling Light

2011-04-11T09:34:00.000-07:00

Today we are trying to get ready to head into town to run some errands. Mark and I were thinking the other day about a comment made at the hospital, something to the effect of how much stuff we had to carry when we traveled. It really felt that way for years and even more so right after John was out of the hospital - somehow anti-rejection meds carry a mental weight far beyond the size of their bottles. At any rate John has been doing so well lately that this weight seems to be lifting, not the importance of meds by any means, just the perception of the enormity of the situation. The other thing that is really helping is John is growing, growing, growing. He's needed new shoes, new pants, new shirts, new underwear, and one less thing ...

...yep, that's right, good bye potty seat!

There are still a few commercial toilets that are a bit intimidating in size, but the potty seat is gone, and we don't have to travel with extra clothes, or formula pumps (he's only hooked up at night) or meds (because we come home for bedtime and he only gets meds in the morning before we leave and at night before bed.) It's sometimes strange, but it's really cool to be traveling this light.

Life by the Numbers

2011-04-02T09:48:00.000-07:00

Today I looked through the 244 pages of the detailed bill from John's transplant and subsequent hospitalization. It totals $1, 551, 885.13, but that's not the part that I was looking for. The PICU time is mostly blood for me, bag after bag of blood or blood products hanging, I have never seen so much blood and I was wondering if I was remembering it as more than it actually was. So I counted and there were

61 units of Packed Red Blood Cells
56 unites of Plasma
30 units of Platelets, and
44 units of Cryoprecipitate, a blood product that is used in hope of setting up clotting and fast.

More days than not I would go through the First Commandment, reminding myself that I was only to fear God, trying to set aside fears that John wouldn't survive, that the medical team would give up or run out of blood. Day after day I continued to pray that God would provide both John's and our Daily Bread, and often times that bread came in the form of another bag of blood.

There is no price in $$ that a life is not worth, there is no price in tears, fears, worries or care that a life is not worth. I will be putting this detailed bill away with all the cards and letters and pictures drawn by little kids that were sent from people who were praying with us. Someday when John is much older and it is time to talk to him about his transplant, the donor's family, the cost of life, the blessing which God has bestowed on him and on us by keeping him here, I want him to see this. I have read several places about transplant patients having a hard time dealing with the thought that someone else died and they lived, survivor guilt of a sort I would guess, on that day it is my prayer that God will guide our words so that John knows that Christ died for him, that his life is so very worth it, and that there is no need to go back and try to repay people who gave so much, there is just this life to live under Christ's cross and in His mercy.

Get It Back Out

2011-03-31T14:59:00.000-07:00

Amongst my friends everyone has their favorite parenting advice, advisor, book, philosophy, etc. I travel in a bunch of friends whose opinions vary fairly narrowly on this and as a rule have pretty well behaved children.

Years before John came along, Mark and I read Parenting With Love and Logic because we were dealing with other people's children, i.e. the youth group and after school programs and such, and needed a way to manage these children behavior without yelling at them and without spanking them. The techniques in the book basically give the child some control over their environment, while still keeping them in the parameters that you choose. The example that comes to mind quickest is one used by the friend who recommended the book in the first place to deal with children and coats in the winter, she would give her child the choice to either carry it or wear it, they have a choice and their coat is at least with them if not actually on them, but they can put it on later if/when they get cold. For us, with other people's kids, these choices worked ok, better than some other ideas and depending on the amount of self-discipline the child already had, pretty good in some cases and in others it just made us look weak.

When John came along he was a sick baby and we were more concerned with keeping him alive than worrying about how we would discipline him when he got big enough to misbehave. Later, while we insisted on manners, please and thank-you, John really didn't have the energy to get himself into too much trouble. Now it's a whole different story. Too many times lately I have found myself thinking "thank God you survived all that, now STOP IT" about whatever he has gotten himself into. He has never had so much energy to get into trouble with and now we find ourselves talking more about what we remember of Love and Logic and needing to get the book back out and hoping that it will work better with our own child, especially since we don't have the no yelling or spanking rules and he knows that.

We are so thankful that John survived, human words cannot express the relief and thankfulness that we feel as we watch him one more time feeling bigger and better and stronger than ever. On the other hand we can't let his survival become an excuse for him to turn into a little brat, which he would surely do right now if left undisciplined. As much as we don't want anyone to pity John for all he's been through, we don't want anyone to be thinking 'oh great, here comes's John, I wonder what he'll break this time' and equipped with a 300 pound power chair set on full-speed-ahead that is a legitimate concern if he appears to be out of control. He is a charming, beautiful little boy, who exudes a love for life like few people I have ever met, and Mark and I, well we figure out job as parents is to raise him so others can enjoy this amazing gift too, and not just cringe in fear when he comes on the scene.

Too Full for Nightmares

2011-03-28T16:40:00.001-07:00

We've been reading to John each night before he goes to bed. It started out with The Cat in the Hat and then The Cat in the Hat Comes Back was added. Soon it was a different picture book here and there, lately it's been One Duck Stuck and now it's a chapter of The Trumpet of the Swan each night too. As you can imagine this takes quite some time to read all of these each night and so a few nights ago when John was goofing around and bedtime got started late cause it was just too much fun to watch him be so silly, we skipped the read alouds, said prayers and he went to sleep. That night he woke up 4 times with nightmares, tossing and hollering and the next morning he told me it was nightmares about the hospital stuff, of course, and some other stuff too. The next night we went back to reading and although he still woke up at 3am, he was calm and there were no nightmares.

I got to thinking about this and I have been having nightmares all along about everything from stuff I've seen happen to John, or I'm afraid will happen to him, to my own inadequacies as a parent, etc., but I noticed too that the more I read through the day the fewer nightmares I have too. So I've been picking up books and reading and each day I find that my own head is getting a little clearer and my nights are a little more restful. At the moment I am reading the Book of Concord with a bunch of ladies on Facebook, and I just finished The Guernsey Literary and Potato Peel Pie Society which was very good and now I am scanning the shelves for what to read next. I have books coming in from CPH that I want to read and a slew of them on reserve at the Library, I can't decide if I should reattempt Don Quixote for the third time (I've not succeeded to finish it yet) or something else, but I am sure that we will read to John before he goes to bed and after Mark and I pray the litany together tonight there will be some book to fall asleep too for me to and hopefully a night without nightmares for both John and I, a night when we have stuffed our heads too full to give the nightmares room.

Lenten Fasts

2011-03-25T07:00:00.000-07:00

Ever since becoming a Lutheran I have heard people speak of Lenten fasts, giving up chocolate or tv or whatever. Mark and I have over the years gone from giving up something, doing nothing other than trying to survive the hectic church schedule, to trying to add something. This year we have been trying, and mostly accomplishing, praying the Litany together each night along with reading the Scripture from and Devotional written by our dear friend Pastor Walt Snyder. But it occurred to me last night as we were coming home from church that we are doing oh so much more than that. We are trying to put life back together and thankfully with John in it.

Four months in Omaha and two months prior to that of constant hospitalization in Columbia has left us trying to remember how to live in the same house together. Mark got used to the quiet, John and I got used to the gone, and none of us ever got used to the missing each other. John's medications and care routines are completely different, laundry is different, supplies don't fit in cabinets that they once did and John out grew all his clothes. We are still all dealing with anxiety issues leftover from Omaha and there are times that it seems that fear still lives right next to our hearts and won't go away. We are over joyed with John's growth and health and being together and does anyone remember where we put this or that and oh wait we forgot to get the plates on the truck, and yes daddy is going to work but he will be back in a couple hours, oh look he's here already!

We are blessed to have come home during this time of Lent with it's increased focus on church and time in the Word both at home and in Worship. We are constantly being refocused and as each day passes we are slowly starting to settle in to our new life. We are looking forward to spending Palm Sunday with our dear friends as their daughter is confirmed and then Holy Week at home. Often after Easter we are tired and relieved to finally be through with the hustle and bustle of this part of the church year, this year I find that I am looking forward to Easter, to hearing my beloved proclaim Christ's resurrection and singing the Alleluias as I sit by my little boy who was brought back from the dead but I will miss the extra services of Lent and somehow the non-Lenten seasons seem more like fasting and the increased times in worship during Lent is a feast of the Word for my heart as we settle into this new life.

Shoes off?

2011-03-24T01:39:00.000-07:00

For the umpteenth time I watched John hook his heel over the edge of the footplate on his chair and kick off his shoes. I don't care much for shoes myself so I just figured he was picking up another of my habits. Mark, who likes shoes, finally asked him about it and guess what, his shoes hurt. So he got to looking and lo and behold the child grew out of all his shoes but is good enough at curling up his toes that he could still get them on. Silly boy now has three new pairs of shoes, sandals that light up, sneakers, and black church shoes which he proudly wore last night and never kicked off once. Just amazing the things that result from proper nutrition!

Eyes on the Boy

2011-03-19T09:49:00.000-07:00

Yesterday we met with Dr. Cantor, the new GI doctor in Columbia. This is the first time that John will have a local GI doc. Eventually as we move farther out from transplant I wonder what this will mean for John, but for now it means that we have a local doctor who can set up the monthly infusions that John needs. As we went through John's med list yesterday the doctor was saying how it's a lot and well it is, but in my head I was thinking about the number of doctors that the kid sees, and well that's a lot too. There is of course a herd of transplant/liver team doctors in Omaha, the ones most familiar with John's case are Dr. Mercer, surgeon, and Dr. Fisher, GI, but then of course their is the other GI doc, Dr. Antonson, and the other surgeons, Dr. Grant, Dr. Botha and Dr. Langnas. In Columbia there is Dr. Beal, John's pediatrician who is just amazing even if he doesn't have privileges at the University hospital where John has gone when he is sick. Dr. Beal has a really unique viewpoint on life, old enough to have many years of experience and the wisdom learned from that and yet young enough (at heart, or chronologically, heart seems to matter more) to keep abreast of new things and be open to new ideas. Dr. Cantor, the aforementioned GI doc. Dr. Groshong a wizened nephrologist who keeps an eye on John's kidneys and blood pressure. Dr. Emmerson and the physical medicine and rehab team who keep an eye on things like is John's spine beginning to curve, does he need new braces, chair parts, etc. Then of course there are the doctors at the hospital who all know him and care for him when he is ill. In St. Louis is Dr. Austin, urologist, who did John's bladder surgery and keeps an eye on some of those issues. It makes me realize both how much help John needs to stay in this life and reach his full potential, how precious life is that all this is so worth it, and how blessed we are to live in the midst of people who have dedicated their lives to taking care of others. This list doesn't even begin to touch the countless nurses, lab people, therapists and such, of course, because for every doctor there is a good dozen or so of the others, who make the doctors jobs doable and add to the blessings of John's life.

Spinning Fast

2011-03-17T20:45:00.000-07:00

Today brought the return of John being able to spin his chair at top speed, it also brought the return of the dog hiding in the other room and the table getting slung around. John was smiling so big by the time it was over and so was I. The table was easy to move back into place and the dog, well she got over it and came back in after a big of calmness.

Tomorrow we are off to see the new GI doc in Columbia who will be contributing to John's care at home and then a weekend of church and home and church and home and oh that just even sounds good.

Ah, Home for Lent

2011-03-16T06:31:00.001-07:00

The word home is still settling in our minds and still putting a smile on our faces. There have been appointments, and there are more to come, running here and there that needs doing, but to come back home after each time we leave the house is like a gift. To be here, standing in the door, waiting for Mark to come home after he has been gone a few minutes or hours instead of days is a present. To have gone to church and received both Word and Sacrament from my beloved and then to return to our home to cook lunch for him and get to watch him and John have time to play before he is off to a meeting. There is so much in life that is just amazing. I thought when we returned home that all these amazing things would stop some of the scary anxiety driven stuff that was happening to John and I both, but even though John has slept through a few nights and sleeps better when he is asleep he is still anxious and awake in the night at times. I still have nightmares off and on, but thankfully not every night. I think that the mental wounds will take a long time to heal, but being home, being with the person we love more than anyone on earth, having all this time to just be makes each passing day a smidge less anxious.

You may wonder what all this has to do with Lent. I will tell you on the very surface for us right now is the blessing of the amount of church services that goes on during Lent. Each time that we load up and go and then receive Word and Word and Sacrament is like a salve to our anxiety, an oasis in the desert, a moment of contact with heaven while we are yet here on earth. At home we say evening prayers with John and hope to soon add in morning devotions with him as well, Mark and I are praying the Litany together and reading through the Lenten devotion written by our good friend Pastor Walt Snyder. Each time we have contact with the Word we find a hair's breadth more peace. We will truly never be the same people who left here in November to head out for Omaha, time cannot be turned back and memories cannot be erased. With Word and Sacrament, with good and faithful friends and family, with the love of each other we will continue to be made new in Christ each day, and may each day find us more merciful, more loving and more determined to live here on earth like we belong in heaven.

Home

2011-03-10T19:14:00.000-08:00

Nearly four months after we left for John's organ transplant we are home! On the drive home I kept remembering things from these past months, blood, beeping, swelling, hope, loss of hope, friends, pastors, family, blood, reminders of how fragile life is, and each time I would look into the rear view mirror and there was John smiling and from time to time signing 'home, daddy, dog, home'. So many times I never thought this day would come, then there was the fear that I would eventually bring him home but he would have suffered traumatic brain damage and would barely be the same boy I left with, and yet here I sit, on my own couch, watching my precious boy with every bit of his personality, wicked smartness and amazing love of life. I am blessed, we are blessed. There are many thank you's to be said along the way, but tonight I want to start them off with a special thank you to Charity Baker and her family. The very word friend has become more precious and carries more meaning because of her, and truly the only hard part about leaving to come home is that now she is 5 hours away. Thank you Charity, you are a friend beyond measure.

Our 2nd Outpatient Clinic...

2011-02-24T13:03:00.000-08:00

...appointment has come and gone and all is well. John is doing great, he looks amazing and the doctors and nurses are just aglow with joy when they look at him. Some minor med tweaking, his liver numbers are now good enough it wasn't even brought up and his kidneys are hanging in there and improving with each passing week. He looks amazing, like better than ever before and we are looking forward to getting to go home in a few weeks so long as no unforseen things come up. We are finally starting to get a little bit more sleep, John is now awake a time or two in the night instead of every couple hours and during the day he is less anxious and more settled even though he still has a very pronounced startle reflex. We have found out from an OT here that John's tongue is just locked up, he has never had side to side motion or the ability to elevate it to his upper teeth or lip and no amount of therapy is going to fix that. In the long run this means that he isn't going to talk and will likely never be able to eat enough calories to sustain him without some form of g-tube feeds or high calorie drinks, but it means nothing about how smart, amazing and wonderful he is and is like his weak legs only a physical issue to work around, not a thing to stop him from doing all kinds of amazing things with his life.

Mark is on his way here through snowy roads and weather so that I can attend a conference on augmentative communication devices tomorrow. We are glad of every moment that we get to have together and slowly are being able to relax a bit and enjoy them more. This has been a long amazing road full of miracles and fear and friendship and one that we will not soon be off of but am glad to have had so many prayers and so much support.

5 Days Shy of 3 Months...

2011-02-10T18:27:00.001-08:00

...and John is outpatient.

Happy Birthday!

2011-02-06T07:15:00.001-08:00

Today is Mark's birthday and John and I are eagerly waiting to get to tell him Happy Birthday in person and loved getting to hear his voice this morning.

I have for years called Mark 'my favorite husband', it gets some sideways looks, but probably because it is misinterpreted by the hearer. What it really means is that in all the world, over all the years, in all the stories, books, and in person, of all the husbands I have ever heard of he is my favorite.

Love is a strange thing, it can be intense and yet hard to pin down exactly why it is what that way. Mark and I have been married for almost 16 years and I love him more today than any day previous in those years and intend to love him more with each day that passes. He is the most fiercely loyal, dedicated, protective man I have ever known, at the same time he is kind, compassionate, caring, strong and gentle.

John and I are blessed each day to be Mark's son and wife and to celebrate his 41st birthday with him, may God bless us to celebrate many many more!

Fresh Lemon and Nutmeg

2011-02-05T09:16:00.001-08:00

John is back out of the PICU, with a new chest tube in place and doing fine. He's working on standing up again, has actually accomplished it twice and is navigating the Wii Mario Kart menus like a champ even if he can't drive well yet. Bad things could always happen but right now, with the exception of being weak and recovering strength still, and this blasted pleural effusion John is healthier than he's ever been in his whole life. News like that lets my head wander home occasionally and last night I was thinking that of the things I miss it's the smell of fresh lemon and freshly ground nutmeg that I keep looking for and not finding here. Home is starting to be a real place to me again, it's full of the smells of home cooked food, fresh garlic, dog hair that floats off the dog and dust that accumulates no matter what I do to stop it. There are orange walls, books everywhere, and the most comfortable bed in the world. Trees that have been trimmed that I've not seen but I'm sure there are lots of their leaves laying around. A crack in one window, a pane missing in the garage and a heart and rose stained glass piece that my sweetheart brought me years ago. Singing the HS'98 Divine Service with the Irish tune, communion from my dear husbands hand weekly, people who have prayed for us and who are also eager to see John healthy too. I was afraid that all these thoughts of home would make me home sick, I remember that feeling when we had been at Grandma's for several weeks and were still a week out from mom and dad coming to get us, but thankfully it hasn't done that. I am content to be right here with John, I couldn't be anywhere else, but I do look forward to when we can both go home together and maybe I'll pick up a good French cookbook at the library just to peruse while I wait because of all things I'm just really wanting to cook something, something good.