House on fire

When Donavon first came to our family 6 years ago, one of the things that could easily start a rage was if someone asked him to draw a picture. He would get so frustrated that he couldn't draw anything he liked. He would try to draw a house, but it never turned out like the picture he had in his head. He would talk a lot about broken houses with broken steps and broken furniture and broken toys. I'm sure there's a fascinating psychological explanation for all that, but when these things start personally playing out in your family's life, they stop being fascinating and just become kind of sad and sometimes scary. But, don't worry! I fixed that problem right up and taught him how to draw a simple and strong house, and they started showing up in every picture he drew. He would have me draw houses for him to color and then he eventually started drawing them himself. I was pretty proud of that little victory. I thought I was slowly becoming the strong and safe "house" for this kid who had never had one. I mean, that's what I was for my other kids, right? I know how to do it - I'm the mom, it's pretty much my full time job. I wanted to be that for him and if I'm being ugly honest, I wanted other people to see me being that for him and his brother. What a beautiful picture of the gospel in this non-traditional family of people that don't look like each other, right? Right.

Fast forward to 6 months ago, we are in our last of several initial appointments with our new pediatric psychiatrist for Kelvin (after his last one died unexpectedly). Kelvin is jumping from the file cabinet to the chair, ripping the clock and calendar off the wall on his way down. The nice doctor is calmly showing us the picture he asked Kelvin to draw, including a house, which is supposed to symbolize the mom. Of course the picture is barely recognizable. But what do you know? Kelvin explained to the doctor that the deep, dark, red streaks are the freaking house, which is ON FIRE. The doctor shrugs his shoulders. I let out a nervous snort. I guess that's me, House On Fire. I would say it fits, and in more ways than one...

When Louisa came along with all of her medical issues I thought, ok, well I can figure this one out! We have one of the country's top pediatric cardiology centers practically in our backyard. I can protect her, I can keep her safe! They will know how to fix her heart and then I'll bring her home and do the stuff I know how to do. But it turns out when I'm home with her, I'm just waiting for something to go wrong. I feel more comfortable with her in our "hospital home" where things start beeping and nurses start running before I even realize there's a problem. As silly as it sounds, I'm still tormented by the fact that I wasn't even in the room with her when her heart stopped. I was taking a shower. I should've been there going through it with her, holding her hand, stroking her hair and telling her it was going to be ok. I'm her mom. And I can't keep her safe and I can't always be there when the bad things happen.  

So here we are again at a place where I am so painfully aware that I can't be the house for any of these little people. Donavon has been in Missouri for 7 months and we are hoping and praying that good things are happening in his heart there, but some days are harder than others to be hopeful. Meanwhile, it feels like Kelvin is slipping away to a place where it's getting harder and harder to reach him and it is achingly familiar. The school is dumbfounded by his fast regression and has sent him home a few times, he is becoming a major "flight risk" in most environments, he isn't sleeping well anymore, he has successfully called 911 twice this weekend, broke the basement freezer and spoiled the $300 of meat stored in it last week, he ripped his closet door off it's hinges with his bare hands this afternoon, and has become more defiant, oppositional, and just generally unhappy. Louisa had been doing great since her Fontan operation last April and we thought this was going to be the start of our hopefully long "coasting" time that HLHS families talk about in the post-Fontan, pre-complications time period (and it still might be). But 2 weeks ago she had what appeared to be a pretty significant seizure and then her subsequent EEG was abnormal, She has a history of brain insults relating to her surgeries, so we're not sure where we'll be heading with her in the neurological department. I want her to be ok! And then I want to slap myself for holding her too tightly. And then I feel crazy.

Once again, it feels like I'm standing on the edge of some sort of cliff with all 7 of my kids and I'm trying to grab each of them to keep them from slipping off, but I can't hold them all at the same time, so when I catch the arm of one, someone else starts slipping out of my grasp. Obviously, this is not a theologically sound picture of what's actually happening. I am not the house keeping them safe or the immovable rock they can stand on or the everlasting arms that are holding any of them. I know the truth and I know the promises and I believe them. I just can't feel it very much right now. The numbness and weariness and grief and fear is so overwhelming at times. I want my sweet baby to grow up. I want my little boy to be carefree and laugh again. I want my big boy to be able to live with us and to trust our love. And I want my 4 other kids to thrive and not grow bitter in the midst of these consuming issues. Please Jesus.

One of my favorites, this passage from Holiness, by J.C. Ryle:

"If any reader of this paper really feels that he has counted the cost, and taken up the cross, I bid him persevere and press on. I dare say you often feel your heart faint, and are sorely tempted to give up in despair. Your enemies seem so many, your besetting sins so strong, your friends so few, the way so steep and narrow, you hardly know what to do. But still I say, persevere and press on. 

The time is very short. A few more years of watching and praying, a few more tossings on the sea of this world, a few more deaths and changes, a few more winters and summers, and all will be over. We shall have fought our last battle, and shall need to fight no more. 

The presence and company of Christ will make amends for all we suffer here below. When we see as we have been seen, and look back on the journey of life, we shall wonder at our own faintness of heart. We shall marvel that we made so much of our cross, and thought so little of our crown. We shall marvel that in “counting the cost” we could ever doubt on which side the balance of profit lay. Let us take courage. We are not far from home."

YES. We are not far from home...

Ditch

We call Donavon on Thursday nights at 8:30 PM EST, 7:30 PM CST. We talk for 30 minutes and usually pass the phone around so everyone in the family can have a turn saying hello. We cover important details like, "What did you have for dinner tonight?" and "What did you do in school today?" and "Is it still hot down there?"  We were excited to call him this week because he was coming off his personal best score since heading down to Runnymede in March (the boys there receive a weekly report that includes scores for school accomplishment, Bible memory and catechism, chores, physical education, and behavior. It's a pretty complex grid that they send out each week, I'm still trying to figure it out after 6 months!). I was sure he was going to be pretty hyped up -- eager to tell us all about it. One of his mentors always answers the phone and gives me a brief update on how his week has been. I could tell right away, things weren't going as well as we'd thought.

"We've noticed especially with the younger boys they tend to have a bad week coming off of a good one. Donavon's had a tough week, mostly in school. He's had Ditch two days in a row. In fact, he's finishing Ditch now. He's sitting on the tire while he talks to you. Here's your son. I hope you guys enjoy your phone call."

It's a big tractor tire and they have to flip it a number of times across a "ditch" along the side of the long driveway that leads up to Runnymede from the road. It's sort of the ultimate consequence for defiant behavior. I once asked Donavon, "What happens if you refuse to do it?" He said, "You can't refuse to do it. You have to do it." "Well, I mean what if a kid just said he wouldn't do it and night came?" "Then you'd just have to go to bed and as soon as you woke up, you'd have to go back to it."

I imagine him sitting there on the tire -- hot, sweaty, dirty, out of breath. "Hi Dad." His voice was down, broken, discouraged. But this was a slightly different voice than I've heard before. Usually in this case you'd hear anger in his voice, or perhaps a whining tone of injustice. This sounded more like remorse. I could be wrong. It might have been exhaustion. Perhaps he was homesick. Maybe just annoyed. In fact, I haven't heard remorse in Donavon's voice much in the 6 years I've been fathering him, so maybe I wouldn't recognize it anyway. That was one of the things that struck some fear in our hearts over the difficult years with Donavon. He was capable of some pretty awful things and we were occasionally successful at getting an apology out of him, but we never had a sense that he was remorseful -- you know, truly sorry for what he'd done, sad that he'd disappointed his parents, ashamed of falling short. These were the times you couldn't help but compare him to his siblings who understood when they'd let their father down. Some of them will burst into tears with merely a look of disappointment from their dad. But not Donavon.

There we were on the phone together -- me pacing up and down my driveway in Michigan and Donavon sitting on a dirty tire in southern Missouri. He was crying, weeping really, and I was trying to be a good dad in my 30 allotted minutes for the week, 730 miles away. I wanted to fly down there and sit on that tire with him and put my arm around him. If they were making a faith-based film about us I'd start helping him flip the tire through the ditch in slow motion with some country-pop Christian band playing an inspirational song. But, life isn't a faith-based film, not mine anyway. I had 30 minutes, well, by now more like 15 because I knew his sibs still wanted to say hi to him. This is our life now. This is a kind of parenting that you don't find in parenting books -- even in the appendix of one.

So, I fumbled around with what I hoped would inspire him to press on, fight the good fight of faith, go in the strength of the Lord. I said, "Donavon, you know the Lord is with you. You can ask him for the strength to do this and he will hear you." To which he replied, "It seems like when I pray the night before that I'll be good, I have a bad day the next day. But when I forget to pray I do better."

Gulp. Ok, now I'm down to 10 minutes. How can I assure this troubled boy who has had 9 rather unconventional and difficult years of life that all I've taught him about the Lord is indeed true and trustworthy? I was shocked by his observation about prayer actually. Donavon is a bright boy. He is capable of learning the right answers and he knows how to tell you what you want to hear. But the fact that he noticed this thing about his experience with prayer was a surprise to me. Is he really praying? Is he truly interacting with the triune God of the universe? Is he actually calling out to Him for help? What great hope that gives me. For I know that if he seeks, he will find. If he knocks, the door will be opened to him. If he asks, it will be granted him.

But what do I do with this observation. It's one I know all too well. I've asked the Lord for things, but it seems like sometimes he grants the opposite of my request. And certainly there are times I've been blessed without asking. In fact, I've been too bitter to ask, and yet, He has richly poured out blessing upon me. How many times did I plead with God to make the tantrum stop, only to have it intensify. I remember begging the Lord that he'd fall asleep, only to get another blood curdling scream in my ear. We've asked for peace, only to wake up to a war at our breakfast table. What's the use in praying? Is it effectual at all? So many of my prayers have gone unanswered. Well, seemingly unanswered. Or have they?

Donavon and I talked about the Lord working in mysterious ways. We talked about God asking Abraham to sacrifice Isaac, but Abraham having the faith to believe that God could raise Isaac from the dead if necessary. We talked about taking a step back and looking at the bigger view of things. There might be bad days here and there, even bad weeks, or bad months, or bad years in our lives, but God sees our WHOLE life. Even looking back to March, he should be able to see great progress. So, maybe it doesn't look like an answered prayer today, with today's issues happening right before your eyes. But if you take a step back, perhaps you can see the Lord working and answering.

This little struggle of Donavon's was hitting close to my heart. Raising Donavon and Kelvin sometimes feels like Ditch to me. It feels like a dirty, heavy tire. Flipping uphill. Just flipping. Over and over and over for no purpose other than to teach me a lesson. And how many times do I have to flip it before I learn the lesson? It seems like I should have learned it by now.

I said goodnight to him. He was still crying. I don't know if he was feeling any hope. I prayed for him. Our family gathered together, the little girls crying over their brother, and we prayed. In fact, when you only have 30 minutes/week to be a parent, you're often left with only one parenting tool -- prayer. And really, it's the best tool. I sat down and wrote Donavon a letter to follow up our brief conversation. I focused it on Psalm 126:

"When the Lord restored the fortunes of Zion, we were like those who dream. Then our mouth was filled with laughter, and our tongue with shouts of joy; then they said among the nations, 'The Lord has done great things for them.' The Lord has done great things for us; we are glad. Restore our fortunes, O Lord, like streams in the Negeb! Those who sow in tears shall reap with shouts of joy! He who goes out weeping, bearing the seed for sowing, shall come home with shouts of joy, bringing his sheaves with him."

This is what I told Donavon about the Psalm:

Here’s the story behind this Psalm. The Israelites were slaves in Babylon. The Lord sent them there because of their sin, but he sent them there with a promise that he would one day restore them -- bring them back to their home. When he finally did after many years, they could hardly believe it. They thought they were dreaming (verse 1). They became so happy, they were laughing uncontrollably and shouting with joy (verse 2)! They were so excited. Then, in verses 5 and 6 the Psalmist reminds them that they went to Babylon very scared, crying over their sin and wickedness. But God turned their tears into joy. He said it was like the tears were seeds put in the ground, but after much time, up came lovely fruit! It makes me think of the melons and tomatoes and potatoes and corn that you guys grow at Runnymede.

So, how does God bring us from crying about our sin to laughing with intense joy? Sin certainly isn’t funny. He does it through Jesus. Jesus is the way that weeping over our sin turns into joy over our salvation. But think about it. How would we appreciate the amazing joy and laughter that our salvation brings us if we didn’t FIRST have a time of sadness, crying, weeping? If we care about our sin, we’ll cry over it. Our sin is really awful, disgusting, and horrible. It should make us cry. If it doesn’t, then we probably don’t understand how truly terrible we are and how truly holy God is.

But, just as the seed over time grows into a lovely fruit that you can enjoy, your tears can turn into amazing joy in being saved, in being adopted into God’s family, being his son. So, Donavon, I’m not entirely sure what your tears were all about on the phone on Thursday, but I wonder if the Lord might be showing you your sin and it’s making you sad. Maybe not, maybe you were just angry, or tired, or frustrated. But I sensed that maybe you were understanding something about your sin. And if that’s true, then I’m confident that over time, you’ll know the joy of being saved. So, that’s why I said I was glad to hear you crying.

I'm just beginning to understand something about the Lord and suffering. It's starting to make some sense. It's ok to ask him for relief and it's good to ask. The Psalms are full of that. But, it's also good to learn to be content in your sufferings. In fact, we can find joy in them. I dare say, I might be finding some joy even now as I write this. There is much I have to be thankful for. It's easy to be thankful for my beautiful wife -- full of strength and wisdom. It's easy to be glad over my "typical" children who do well in school and make me proud in their athletic endeavors and performances. It's easy to be thankful for my comfortable home and my new (used) Jeep! But, I'm beginning to grow a deeper appreciation and now even a gratitude for the Lord's providence in bringing me pain. This pain is maybe, just maybe beginning to send a shoot up above the soil. The tears of sorrow that were planted have taken root. There are seedlings and there is hope that their will be choice fruit some day. I'm not naive. What looks like a lovely shoot early on could indeed sprout up to be a thistle. But even that will be a providence that produces a tear that can be sown and later reaped in joy.

It's my prayer that I'll bring that fruit to the wedding banquet of the King. I'll cut into it and among the multitude I'll hand a piece to Carissa, and Noah, and Natalie, and Francesca, and Maizy, and Louisa, and Kelvin, and Donavon. I'll watch him bite into it and see that big grin of his. And we'll all watch as his grin turns into a chuckle, and then a big, snorting, belly laugh! I imagine I'll look over his shoulder and see something off in the distance near one of heaven's trees, next to a ditch, perhaps with some tall grass growing over it since it hasn't been moved in a long while. Sure enough, it's that crazy Runnymede tractor tire. And I'll give a shout of joy.

What a difference a year (or two) makes

3 month old Louisa at Mott

Louisa today, 4 days post-op

Two years ago today we were on the same floor of the same hospital, in the very early days of a 7 week hospital stay. There were a lot of doctors and nurses scratching there heads. Here at Mott, they round on you every morning. There's a huge team -- doctors, nurse practitioners, nurses, nutritionists, pharmacists, fellows, residents, students. Many mornings 2 years ago, they would all march into our room and circle the crib of this little girl and not really know what was going on. We were just waiting. Waiting to see if she'd get better, or waiting to see if she'd get worse and they'd figure out what had to be done. Sure enough, she got worse and they figured out she needed surgery sooner rather than later. And eventually, after 7 weeks, she recovered and we went home. Some damage was done -- some blood clots, some strokes, some brain bleeds. But, she didn't seem all that bothered by it. Those things affected us more than her. We began to really see how fragile this little girl's life was. But watching her battle through it all gave us an even more important insight, namely that God is infinitely more powerful than we are knowledgeable.

So, here we are 2 years later in the same hospital with a little girl who has experienced the Lord's power again, This time, in a completely different way. No one is confused this time. No one is baffled. The surgery was "straight forward" and so far the recovery is "as expected". The team has come around each morning but the faces aren't blank this time. They are just smiling and nodding and going through their protocols. It's amazing. "Do you have any questions?" they always ask. In my head I'm thinking, "When is it going to go terribly bad? When is her heart going to stop? When is some bizarre complication going to happen that no one can figure out?" But I look at their faces again and they are bright and they're not confused or concerned. We haven't heard the words, "Hmm, I don't know..." yet.

We're praising the Lord that he answered our prayers. But, we're not naive. Bad things could still happen. Her chest tube drainage has slowed down. In fact, one was slowed enough that they just pulled it out. But the drainage could pick up again once she starts moving around. And it might become chylous (lymphatic fluid) that could mess a few things up. And alarms go off here. In fact, one just went off and the group of medical people standing outside our door ran off, but they're back pretty quick and all smiling. Must have been a false alarm -- the best kind of alarm. I instinctively looked up at Louisa's monitor to make sure it wasn't her heart that wasn't beating. But those little spikes are marching along at 118 beats/minute and her oxygen level looks good. No alarm here. Not this time.

So now what? We're status post Fontan. In the short term, we advance her diet as tolerated, monitor the fluid output, get her up and walking, and hopefully in a week or so, get the other two chest tubes out and go home. What an amazing day that will be. When I pulled out of the garage at 5 AM on Monday to head for Ann Arbor, I wondered if I'd pull back into that garage with Louisa in her car seat or if it would be empty. After that we'll come back for follow-up visits and maybe an ECHO every 6 months for a while and then yearly probably (I don't really know). But then we're in the weird no-man's land, in limbo. Medicine has advanced to get her this far, but no one really knows what comes next.

Don't get me wrong, we begged and pleaded to reach this stage. We are overjoyed to have gotten this far. We don't deserve it and it's by the Lord's mercy that we're here. It just feels like a weird stage to be in for the first time. From the moment we got the diagnosis we were moving one step at a time and had a surgical stage to aim for. Now we're done. Either she takes off with this new anatomy or she doesn't. Only time will tell. But I might be getting just a bit ahead of myself. We're still here in this place. It does have a way of sucking you in and not letting you go.

It does feel strange. Did we really move out of the ICU for the last time? Did I just shake Dr. Ohye's hand for the last time after a surgery? And there are rooms here that my memories are still living in. They hit you suddenly and play like a movie in your mind -- with the edges kind of fuzzy or blurred so you know they're just memories. Or maybe without any audio, just the video. I took a quick glance in the consultation room where we came undone on arrest day. I could see the doctor and the nurse and the social worker leaning against that wall and telling us what was happening.  I sat in the same chair to call my parents 2 days ago to give a good report that I remember crying in when I called 2 years ago. I walked past the room down the hall expecting to see one of the families that was here last time, but they are gone now. Some went home to their "post-Fontan" life, others we knew drove home with empty car seats. I see the table where we had the Pizza House dinner with Christina and Elliott Orr, who is with the Lord now. Some of these are hard memories, but I'm beginning to cherish them as evidences of God's grace in our lives.

It feels like we've learned enough. But, we know there's more to come. I'm not sure if it's tomorrow, next week, next year, or 20 years from now. And I'm not sure what it will look like. The Lord knows, and that has to be enough. I wouldn't want it any other way. He has shown us time and time again that his all-sufficient grace will keep us from drowning in the deep waters. Though, if he saw fit to come back right now to make all things right -- no more sin, no more tears, no more pokes, no more single ventricles, no more central lines, no more chest tubes, no more sternotomies, no more ventilators, no more de-sats, no more heart failure -- that'd be ok with me too. Come Lord Jesus.

Day 1 post-op

Day 2

Day 2

Day 3

Day 4

She got a big girl bed so Mom and Dad can watch Baby Einstein with her

These short people visiting 2 years ago

Visiting in their current ginormous bodies

So happy to be together today

Wide-eyed girls visiting 2 years ago when their sister was
very sick

Guest blogger: Louisa after her cath

Thank goodness I don't have to do that every day. It felt so foreign and wrong, but the weird thing is it felt familiar and normal at the same time. I'm only 2 years old, so it's kind of hard to sort this out in my brain. But I'll do my best to tell you about my day last Thursday. That place is like an alternate universe. I once heard of this show called the Twilight Zone. Dad says the hospital could host an entire season of that show. This is my hospital. It has such a long name -- C.S. Mott Children's Hospital and Von Voigtlander Women's Hospital. There's no way I could ever say that. I'm only saying 2, and occasionally 3-word sentences. I guess that's why most people just say "Mott". But some people say "Motts" with an "s" and that just reminds me of applesauce.

2 days ago everyone in my family was home. It was a normal day of cereal and school work, peanut butter and jelly sandwiches, some chores, dinner, dance class, soccer and track practice and then bed time. For me, it was a Baby Einstein episode, a Ba-ba, flipping a couple cereal bowls, a bath, trashing my brother's puzzle, banging on an open computer, sneaking into the pantry and downing who knows how many mini Reese's peanut butter cups (I don't really count past 3 yet, so all I know is it was more than 3). It was normal and familiar. Today, they woke me up at 5:45 AM! Mom always says, "never wake a sleeping baby." I wonder why she broke her rule. Then they put me in the car without a Ba-ba. "Ba-ba? Ba-ba?", I protested. Why on earth did mom and dad get to drive through Tim Hortons and I got nothing? They were hiding their food, but I could smell it! Something about the day wasn't right. When you're 2, it's confusing. Soon I'd be back in that place where people do strange things to you, but act like it's completely normal.

We drove through the rain. Dad seemed a little nervous, maybe because it was raining so hard and the semi trucks were going so fast spitting water all over the windshield. He said he was glad he replaced the wiper blades last night and the headlamp bulb. Dad brags to Mom when he fixes something in the car. I think it makes him feel more like a man or something. But I'll bet real car guys would laugh at him for thinking changing a bulb and wiper blades is a "car repair". But it does seem to impress Mom nonetheless. Mom was freaking out again in the car. Dad kept telling her to relax, but it wasn't working. She starts talking fast and loud when she's nervous. She probably needed her coffee or something.


We finally pulled up to that monstrosity of a health system. We always come in from the north and see the adult hospital first. I think it looks like a former Soviet Union hospital would look. It's just a gigantic heap of pale yellow concrete with those big block Ms on the top.
The traffic was stopped for a minute because a helicopter was taking off. That was pretty neat to see. I hope I never have to ride in one of those though. They fly over our house a lot and Dad likes to joke that maybe one day it will land in our front yard to bring me here. That would be crazy. Finally we rounded the bend and I saw my hospital. It looked so much better than the adult one. It has lots of windows and colorful lights inside. It's real curvy too, not like the adult hospital shaped like cinder blocks. Mom said they should've made the parking ramp taller for such a big hospital. We had to go round and round that ramp until someone gave up their spot for us.

We went inside and got our stickers from the nice guys in suits at the desk. They ask the same questions every time. It's nice of them to care about us - whether we've been sick lately and if we've gone on vacation outside the country - but sometimes they say it in a way that seems like they don't really care. They sound a little like robots, but they're still really nice. Mom and Dad went to Florida, but I guess that's not outside the country because they didn't say anything about it. We first stopped at the desk on the 3rd floor and checked in. They called me back to a big room with a tiny chair that seemed pretty high off the ground. Dad put me in that chair and some lady strapped me to it with these tight velcro straps with my arms above my head and I couldn't move at all! I was really scared. Then they all just left me there and stood behind a wall with a window. Mom and Dad were waving and smiling and acting like I should be excited about this, but I wasn't! It was weird and scary! Then I heard a beep and the lady turned my chair sideways, more waving and smiling from Mom and Dad and then another beep and then they finally unstrapped me. I didn't like that. But, it was pretty quick I guess. Next, we rode the elevator up to the 11th floor.

One of the nice nurses met us there and took us back to a room. The doctor came in to talk to Mom and Dad. He made some funny faces at me and said I was cute. That made me feel like I could trust him. Mom and Dad were a little nervous because it wasn't the doctor I usually see. I guess he got sick with the flu or something so they sent this guy instead. I didn't know doctors could get sick too. The nice doctor had Dad sign a paper. He was saying things like "perforation, cardiac arrest, bleeding, stroke, death". Those sounded like bad things, but maybe Dad had to sign that paper to say he didn't want any of those things to happen to me. Anyway, the doctor said they use really flexible instruments in my blood vessels so that stuff usually doesn't happen. Usually?

                                         

Then we walked to another room and they checked my oxygen level and then I had visits from some of my favorite nurses. Mom squeezed some weird red medicine into my mouth. It wasn't long before I started to feel really strange. I felt kind of warm and dizzy and things started to seem kind of fuzzy. Maybe mom should take some of that medicine! It sure made me feel pretty relaxed. And that's what Dad always says to her, "relax". Yeah, she should definitely get some of that stuff. Then Mom and Dad said goodbye to me. They seemed kind of nervous, but my favorite nurse was there and she kept them pretty distracted. I think God sent my nice nurse to come and talk to them so they wouldn't freak out. That was a good idea. Then that weird guy and the lady with a funny paper hat wheeled me away from Mom and Dad. That guy put this mask over my mouth and nose. I was scared for about 3 seconds, but then, I fell asleep.

The next thing I knew I was waking up in another room. There were wires all over me again. And I felt so tired. My eyes were heavy like my lids were filled with sand and I couldn't focus my eyes. There was that light taped to my finger and an IV in my hand and my throat was sore. I was trying to call for Mom and Dad but my throat was so scratchy.
It was such a relief when they came in. They seemed really glad to see me. But, all I could think about was my Ba-ba. I wanted it so bad. The nurse said I needed to be careful because of the anesthesia and not drink too much too fast or I might puke. But that cold milk felt so good on my throat. I chugged half of it down right away and then Dad yanked it out of my mouth. I guess he wanted me to obey the nurse, but I was mad and I started to go crazy and tried to climb out of my crib. I must have been holding my breath because my sats started dropping into the 50s and the nurse came running in. They stuck that oxygen mask in my face and calmed me down. I guess I was ok, but Mom got scared at how gray I turned. The nurses said not to worry, it was just the anesthesia. Mom did her nervous half-laugh and said, "So, this isn't going to happen again tonight at home, right?"

                                        

I calmed down and took a long nap. I felt a lot better when I woke up and they let me eat some food. I had to lay down for 4 hours after my cath. Mom thought that would be hard for me, but I felt so crazy, it was nice to just lay there. Finally, they said I could go home. I slept the whole way. But while I slept, I could hear Mom and Dad talking about my cath. They were saying how glad they were that things went smoothly. They talked about how the Lord answered their prayers and that so many other people were praying for me too.

Dad was talking about how awful it felt when the lady said the doctor wanted to meet with them and showed them to a consultation room. Dad was remembering how many times they waited in consultation rooms for bad news. There was the consultation room at Sparrow after their first ultrasound, and the consultation room during the first visit to Mott when Mom was still pregnant and they talked about all the things that would happen to me. And the consultation room they waited in when I arrested after my first surgery. Dad thinks they should call them "bad news rooms". So, they waited for what felt like 6 hours. Dad said he just kept wondering if maybe they would come in with more bad news, or even the worst news. He wondered if he'd given me my last kiss when he said goodbye to me before my cath. He remembered his first kiss right after I was born. He said to Mom, "At least they haven't sent a social worker...yet." Finally, he saw the doctor's face coming toward the door and he knew by the bright look in his eyes that things were ok. He told them about my pressures in my ventricle and in my pulmonary arteries. He thinks it was 12 in the arteries and 7 in the ventricle and that that gradient was perfect for moving ahead with the Fontan surgery. I guess I had this big mess of collateral blood vessels coming off my right internal mammary artery.
The doctor said that wasn't going to be good for me so he put a big plug in it (even though it seems like usually plugged arteries are a bad thing. But, this guy did seem to know what he was doing). He showed Mom and Dad the pictures. It looked pretty impressive. I guess I won't have a RIMA for the rest of my life. Oh well, I don't have a left ventricle either.


So, it was kind of a crazy day for me. For all those nice people at Mott, it was just a usual day. They'll do the same things to some other kids tomorrow. They'll stick IVs in them and run catheters in their arteries and veins, and strap them to walls to get xrays. To them, it's normal. To me, it feels a little strange. But, I agree with Dad, the strangeness has almost become a comfort. I guess the more we do here, the more it feels normal. Come to think of it, this crazy stuff is all I've ever known. I guess it is actually normal for me. I don't know if it will ever be "normal" to Mom and Dad. Mom still shakes sometimes and Dad said he's pretty sure there will be more consultation rooms in their future with me. At Mott they're always saying things like, "Thank you Jesus" and "Please Lord". I guess Mott has taught them a lot about God. That seems good. Hopefully I'll learn a lot about God too. It seems like maybe that's the whole point of this. At least that's what Dad says. So, I guess I should look forward to the Fontan - it's supposed to happen pretty soon!

On the left is the before picture of some collaterals. On the right is after placing a plug and a coil.

On the left is a nice picture of the aortic arch. On the right is the extensive collaterals to the lung off the RIMA.

The hemi-Fontan circuit and pulmonary arteries.

Courage, dear heart

our ridiculous countdown app

Well, here we are with officially less than one month to go before Louisa's Big. Bad. Fontan. Pretty much everything in her life so far has been leading up to this point. The research dollars are put into trying to keep single ventricle kids alive in the critical stages before the Fontan. The first 2 surgeries she had were paving the way for the Fontan. During the Fontan, they'll stop her heart again, cool her body to something like an insane 60 degrees, and slow her brain function so they can complete the process of replacing the pumping function of her missing ventricle with a passive circulation network that sends the blood directly from her body to her lungs. If we were talking about college basketball, this would be the Big Dance for Louisa. This is where the blue babies are supposed to turn pink. Her oxygen saturation has been dropping and is now running in the low 80s or high 70s, hopefully we'll be up somewhere in the 90s when we're done here. But "post-Fontan" life is kind of a weird black hole where we hope medicine will catch up in her lifetime to deal with the serious complications that come with living long-term in the Fontan circulation. Her one ventricle will get tired of doing all the work on its own and her other organs with start to suffer the consequences of blood backing up in the system. But that's getting way ahead of the game, which is a problem I consistently struggle with... 

Right now we have 28 more days to live in the pre-Fontan world. I've placed Louisa in the basket and pushed her out into the roaring river before, but she was just a cute little cuddly blob back then. Now she's so much more fully my Louisa. She says, "Mama down?" and points to the pillow with her blue little finger tip when she wants me to lay down next to her. She wants her dad to throw her "up high" when he gets home from work. She wreaks havoc on Kelvin's puzzles and the little girls' tea parties and she cuddles on the couch with the big kids late in the evening. So basically I'm hemorrhaging anxiety (possible??) at the thought of going back and it's building everyday. Some days it comes in handy like yesterday when I planned all the dinners for the next four weeks until surgery. And some days it sucker punches me and I end up trying to hold my guts in and crying on the little stool behind my closet door. I've been shutting down, I've been lashing out, and I've had a few minor panic attacks at Meijer noticing expiration dates that are after the Fontan. On one hand there are millions of unknowns and on the other hand is the hard reality of what I DO know -- I've been in that stupid consultation room waiting for them to come in and tell me if she's still hanging on or not. The memories and fears press in as April 18 inches closer on the calendar. I think about all the heart moms who haven't made it this far in the journey and who would give anything to feel this pre-surgery anxiety right now and it just hurts even more. It is incredibly hard to admit that you have absolutely no control of what goes on in the operating room where life and death happen every day. I grasp at straws and think that if I at least UNDERSTAND what's happening in there and if I have all the right questions to ask and know what all the numbers on the monitor mean I'll have just a tiny bit of control. So I read and I research and I join the facebook groups and it never makes me feel any better because, surprise! I still have no control. I am forced to go back and cling to the one who actually IS in control and who I know will meet me in the furnace when I have to dive back in head first.  I remember reading these verses from Isaiah 46 over and over before Louisa was born:

"Remember this and stand firm... remember the former things of old; for I am God, and there is no other; I am God, and there is none like me, declaring the end from the beginning and from ancient times things not yet done, saying, 'My counsel shall stand, and I will accomplish all my purpose,'...I have spoken, and I will bring it to pass; I have purposed, and I will do it."

I love my Louisa Joy so much, but there is one who loves her more. And she is invincible until His good purpose declares her not to be. She is a covenant child and the reality is that I cannot lose her. My fear of death right now threatens to consume me at times -- I'll be walking through Target looking for an Easter dress and all of a sudden it's a funeral dress. But what a week it is to remember that no matter what, it doesn't stay Friday forever -- Sunday is right around the corner where death is dead. "Death is swallowed up in victory. O death, where is your victory? O death, where is your sting?" And all of my fears will be dead too. I feel weak and scared, but I have been praying for courage.

My cousin made this and gave it to me this morning... I'm so thankful for saints like her who show me courage and give me courage:

 The quote comes from The Voyage of the Dawn Treader:

Drinian's hand shook on the tiller and a line of cold sweat ran down his face. The same idea was occurring to everyone on board. “We shall never get out, never get out,” moaned the rowers. “He's steering us wrong. We're going round and round in circles. We shall never get out.” The stranger, who had been lying in a huddled heap on the deck, sat up and burst out into a horrible screaming laugh. 

“Never get out!” he yelled. “That's it. Of course. We shall never get out. What a fool I was to have thought they would let me go as easily as that. No, no, we shall never get out.” 

Lucy leant her head on the edge of the fighting top and whispered, “Aslan, Aslan, if ever you loved us at all, send us help now.” The darkness did not grow any less, but she began to feel a little—a very, very little—better. “After all, nothing has really happened to us yet,” she thought. 

“Look!” cried Rynelf's voice hoarsely from the bows. There was a tiny speck of light ahead, and while they watched a broad beam of light fell from it upon the ship. It did not alter the surrounding darkness, but the whole ship was lit up as if by searchlight. Caspian blinked, stared round, saw the faces of his companions all with wild, fixed expressions. Everyone was staring in the same direction: behind everyone lay his black, sharply-edged shadow. 

Lucy looked along the beam and presently saw something in it. At first it looked like a cross, then it looked like an aeroplane, then it looked like a kite, and at last with a whirring of wings it was right overhead and was an albatross. It circled three times round the mast and then perched for an instant on the crest of the gilded dragon at the prow. It called out in a strong sweet voice what seemed to be words though no one understood them. After that it spread its wings, rose, and began to fly slowly ahead, bearing a little to starboard. Drinian steered after it not doubting that it offered good guidance. But no one except Lucy knew that as it circled the mast it had whispered to her, “Courage, dear heart,” and the voice, she felt sure, was Aslan's, and with the voice a delicious smell breathed in her face. 

In a few moments the darkness turned into a greyness ahead, and then, almost before they dared to begin hoping, they had shot out into the sunlight and were in the warm, blue world again. And all at once everybody realized that there was nothing to be afraid of and never had been. They blinked their eyes and looked about them. The brightness of the ship herself astonished them: they had half expected to find that the darkness would cling to the white and the green and the gold in the form of some grime or scum. And then first one, and then another, began laughing.

                                                        

Courage, dear heart.

Psalm 34

There are some amazing Psalms. It seems clear that one of the purposes the Lord had in making David's life so tumultuous was the writing of the Psalms. He knew that mankind, living for thousands of years in this fallen world, would experience a lot of pain, uncertainty, and fear. And he knew the heights of joy and happiness love would bring -- love from Him and love from each other. The Psalms give us a chance to express to the Lord what we're feeling. They put into words what our hearts, minds, and guts are speaking to us all day long.

We've been trying to read a Psalm every night when we get in bed in order to calm our fears as we turn our minds and bodies over to the Lord for the night. Last night we read Psalm 34. The title says it was written when David "changed his behavior before Abimelech, so that he drove him out, and he went away." That story is found in 1 Samuel 21:10-15. David is literally fleeing for his life from Saul who wants him dead. He ends up in Gath. Apparently Gath was no safer than Nob where he was previously so he "pretended to be insane" so they would cast him out of their land unharmed. Seems like he was pretty desperate. And in that desperation he wrote Psalm 34. I'll highlight a few of the verses with how it relates to life at the Minnaar house lately.

"I will bless the Lord at all times;
his praise shall continually be in my mouth." (v. 1)

How did David do that? At all times? Continually? He was fleeing for his life, acting like a madman. He "let his spittle run down his beard" in a desperate attempt to stay alive and yet he is blessing and praising the Lord. This has been a challenge for us. There's plenty of other Psalms with more of a "how long O Lord?" message. I'd say "how long" has been our theme of late. But this is a good challenge -- to keep my mouth in the blessing and praising business. I asked a friend recently how he was able to deal with the fear of the future and he told me prayers of thanksgiving. That was a good reminder. I don't know what tomorrow brings, but I know how the Lord has blessed me today. I took another breath as I woke up this morning, I watched my little kids play basketball, I can appreciate the chicken and rice casserole my wife made tonight and say thanks and bless the Lord.

"I sought the Lord, and he answered me
and delivered me from all my fears." (v. 4)

David writes that in the past tense. He was delivered from ALL his fears. Fear is a prevailing force in our lives right now. Donavon's issues make us afraid. We're afraid of his next "episode". How violent will it be? A few nights ago he came down in the middle of the night and stood next to our bed. Sensing someone's presence I woke up. "What's going on buddy?" "I couldn't sleep. I was imagining you guys were dead." So what does that mean? He wasn't sad or scared, he just said it matter of fact. So, we fear the nights. Are we all really safe here?  We fear for his future. If things don't turn around, this trajectory is almost certainly not a good one. How far will it go? What kind of destruction is along this road? We will seek the Lord, he will answer us and deliver us. Whom have we to fear?

We're afraid about Louisa too. She's had a nasty virus this week, spiking fevers. She gets shaky and is bluer than normal. Her oxygen levels dip and her heart rate goes up to 150. She's clinging to her mom and Carissa's nerves are shot. How are we going to do this surgery? Is she going to make it? It seems like the last few families we've followed have had their worst fears for their child come true. Is she going to be one of those kids who goes right from the Fontan surgery to the transplant list? Might she end up languishing along for months in the hospital with some complication -- whether large or small. Will we bring her home and be a family again?

"This poor man cried, and the Lord heard him
and saved him out of all his troubles.
The angel of the Lord encamps
around those who fear him, and delivers them.
Oh, taste and see that the Lord is good!
Blessed is the man who takes refuge in him!
Oh, fear the Lord, you his saints,
for those who fear him have no lack!" (vs. 6-9)

This poor man cried. I hadn't cried in a long time and then we were in a counseling session at church (a quick aside: counseling is a good thing. If you're in a difficult season in life, find a good Biblical counselor who can remind you of the truth. Like Carissa has said, it's like having your own tailormade sermon for an hour. We praise God for our church's commitment to Biblical counseling, thanks Pat), and I cried. I was talking about Louisa's greetings when I come home from work. You dads know what I'm talking about -- your 2 year old yells, "daddy!" like she's been waiting all day for that door to open and she comes running/stumbling to you at the door and hugs your knees. So I was talking about my fears of those greetings being numbered to only a few more and I cried. Later that day we had our family therapy for Donavon (which can be a bit comical at times) and we were playing a feelings game. I caught the feelings ball with my thumb landing on "when was the last time you cried?" "Ha! Just this morning actually." If crying was the pre-requisite for deliverance from our troubles, I think we'd all be delivered by now. How does David write this in the midst of the struggles he was facing? He must have had a greater deliverance in mind. Actually, as I write this I'm getting things thrown at me in anger (thankfully, so far they're just pillows!). Lord, I'm ready for deliverance, I'm crying out to you. I know that in Christ I have no lack. That is my hope. He is my refuge.

"The Lord is near to the brokenhearted
and saves the crushed in spirit." (v. 18)

We know the Lord is near to us because our hearts are broken. You go into adoption knowing that it's risky. I knew it would be hard at best. I knew it could be devastating actually. I guess I just thought it would work out. And it might. The story isn't over yet. I just didn't imagine the magnitude. I imagined that I might be rejected as a father, but I didn't imagine that it would be such constant rejection. Even tonight he is staying close to me, but every once in a while hurls something at me. When I ask if I can help he just says that I hate him. But he doesn't want to leave the room. He wants me to pursue him it seems, but only so he can heap on the insults. It's relentless rejection. And I know most of it isn't his fault -- his brain got severely damaged by trauma and neglect. I never imagined how consuming the rejection and manipulation would be. So now we're making the choice to do something that feels for all the world like the wrong thing for a parent to do, but we feel like we need to do it for him and for the rest of the family. We're going to see if a break from our home in an intensive therapeutic boarding school will help. We struggled to find one that would accept him due to the severity of some of the issues and his age, but we finally found one that seems like a perfect fit. Our spirits are crushed, and we need the Lord to draw near. We pray He'll draw near to our son even though we'll be far away. We pray his heart will develop a longing for home. His heart is broken and his spirit crushed too. Lord, draw near to him, and have mercy on our son.

           "Many are the afflictions of the righteous,
           but the Lord delivers him out of them all.
           He keeps all his bones;
           not one of them are broken.
           The Lord redeems the life of his servants;
           none of those who take refuge in him
           will be condemned." (v. 19, 20, 22)

So, this is our hope, that He HAS and WILL deliver us and redeem us. We have taken refuge in him. We long for our home to be a refuge for all those residing in it. It hasn't felt like a refuge for a while, but in reality it IS a refuge because we're a covenant family and this is a Christian home. We pray that ALL our children will take refuge in Him and not be condemned. We long for that more than anything else for them.

A dear friend started a GoFundMe page for us to help cover Donavon's school expenses. If you want to check it out, visit:  Donavon and Louisa - GoFundMe

Last bball game this morning

Some trust in chariots, some trust in pink unicorns...