Thursday, March 31, 2011

Get It Back Out

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.

Monday, March 28, 2011

Too Full for Nightmares

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.

Friday, March 25, 2011

Lenten Fasts

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.

Thursday, March 24, 2011

Shoes off?

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!

Saturday, March 19, 2011

Eyes on the Boy

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.

Thursday, March 17, 2011

Spinning Fast

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.

Wednesday, March 16, 2011

Ah, Home for Lent

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.

Thursday, March 10, 2011


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.