All Primed Up

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

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

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

So Not a Lap Dog

Upside Down with Dad!

Playing with Music in the Sunshine

Cleaning under the Desk

One Year From Transplant

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

Watching Shorty Dance

Yes I Can Count to Five!!!

Friends are the Best

Blueberries are Yummy!

Funny Faces

Luigi

Ready for Vacation

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

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

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

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

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

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

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

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

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

We All Scream...

...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

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!