Lessons Learned from My Donna

September 15th, 2016
One of my favorites - Donna right after shaving her head for yet another go-round with cancer and trying on a new wig.

One of my favorites – Donna right after shaving her head for yet another go-round with cancer and trying on a new wig.

Not the best pic of me!  But such a fun memory - down in NC for a couple events and getting to visit her wonderful friend Susan and get out on the boat!

Not the best pic of me! But such a fun memory – down in NC for a couple events and getting to visit her wonderful friend Susan and get out on the boat!

Donna getting to meet one of her long-time favorites from Women of Faith, Thelma Wells, at a conference we were at together.

Donna getting to meet one of her long-time favorites from Women of Faith, Thelma Wells, at a conference we were at together.

Nearly six years ago I was sitting with a friend at a coffee shop, telling her about a job with our ministry I was trying to fill. I said, “I don’t really expect to find someone with experience in this – it’s too unusual for this area. What I really need is a certain personality. If I had the right person, I could train them to do it.” She asked me what I was looking for. “Most important would be rock-solid faith in Christ – I don’t want them to be swayed when Christians aren’t kind. I also need someone who can talk to anyone and isn’t intimidated by that, a connector who loves people and meeting new people, and is also very organized and persistent and willing to travel.” My friend immediately said, “You need to meet Donna Klabunde!”

Things got busy and I was traveling, but a couple of months later I found myself at another coffee shop meeting Donna for the first time. She was lovely, and as we talked, I really felt like she was the right one for the job. At the end of our meeting I said, “I would love to hire you. What do you think?” And she said something I don’t think anyone would recommend saying in a job interview:

“Jennifer, this sounds wonderful, and I really think I could do a good job and would enjoy it. I would love to be back in ministry and I’m very excited! But I think you should know something about me before you hire me. I could die at any time.” It was such a shocking thing to say that it was almost funny, but then I realized she was perfectly serious. She’d had cancer for years. It was currently stable, but she didn’t want me to hire her without understanding the risks.

Donna’s first cancer was as a very young woman with a brand-new baby, her third, Hannah. It was a kind that was easily treatable, and while frightening, seemed to be over. Unfortunately, they now suspect that the treatment used at that time for that cancer caused others. When Hannah was in kindergarten, they discovered a very bad form of breast cancer, and it was Stage 4. Donna was given a few months to live. She asked the Lord if he would save her. Specifically she asked to see Hannah graduate from high school – she wanted to raise her children. The doctors offered her an experimental treatment, and because she was dying anyway, she tried it. It worked. It didn’t get the cancer out of her body completely, but it stopped it from growing. When I met her, she’d been living that way years longer than anyone had data for. But they had told her that one day her body would become resistant, and they would have to try something else.

Donna started working with me about five and a half years ago, and what a blessing she was! She became such a good friend as well as a co-worker, and she had a beautiful ministry of her own at all my events. Every time she was with me, I would find her after the concert or retreat talk praying with women who had cancer, or someone who was going through a hard time. She could light up a room, and she made friends everywhere we went. She just exuded God’s love, and people around her felt it!

She had a very different perspective, living with cancer the way she did. She said often when we would talk about her future and health, “Today, I’m healthy. Until the doctor tells me otherwise, I am healthy.” She could have lived in fear and doubt and worry and let them rob her of the miraculous extra 12 years the Lord gave her, but she didn’t. She lived every day of her life, and last year she got to see her Hannah graduate from high school and know that the Lord had said yes to that particular prayer.

Here are just a few of the many lessons I learned from my Donna:

The Lord is reliable. Donna had “the peace that passes understanding” (Phil 4:6). He met her every need, and His faithfulness to her was a truth she shared with everyone. He has promised us heaven, and He is reliable – she didn’t want to leave her family or suffer, but she was never worried about her future or whether God would supply what she needed. She knew He would.

Every day is a gift. As I said before, Donna didn’t waste her life. I have known people to get bad news about their health, and that is the end of it for them – they stop living and instead wait to die. That was never Donna. She lived every day, and she chose purposefully to see the good and find the fun in everything.

Love people intentionally. Donna had the best friend group I’d ever seen. I was (and still am!) a little jealous – her “posse” is an amazing group. At first I thought she was just blessed, but then I realized she had such a determination to love people intentionally. She didn’t hold onto her pride, she was always willing to be the first to reach out, she was thoughtful, and she was a great friend. I am often scared to reach out, but she taught me to be more fearless. She invested deeply in her friends, and also really listened and empathized with people she met. She made everyone feel special.

Don’t miss an opportunity. When Donna’s cancer came back again about a year and a half ago, it was a different kind and it was much worse. We knew it was going to be bad. But as we talked about it, she said, “I trust God. And you know what? I have met people I never would have without cancer. I am with medical personnel and other patients I would never know otherwise. Maybe God wants me to share with them – He is always working the bad stuff for good.”

Laugh often, and look for the good. Donna didn’t walk through life as a virtuous, suffering saint. She laughed hard and often. She looked for the good in all circumstances and in all people. She made fun of herself. She acted goofy. She said she had a choice in how she confronted hard things in life, and she chose laughter and joy.

Donna leaves a hole in my heart. Her family has become so dear to me because she never stopped talking about them! And I will continue to pray for Larry, Josh, Jon, and Hannah – I know how it feels to be missing someone so crucial. But I also know without a doubt that we will see Donna again. And if we had this much fun together on earth, it’s going to be simply amazing in heaven! I’m so glad she’s there and healed and whole, and Donna, we will see you soon.

Noah’s heart surgery

August 25th, 2016
Picture from 7/11 - the first one I felt comfortable sharing

Picture from 7/11 – the first one I felt comfortable sharing

Picture from July 15th with the Husky on his head - first real smile in a while!

Picture from July 15th with the Husky on his head – first real smile in a while!

Picture from July 18th - Hannah and Micah and friends with Toby and Noah and came to build with them.  They visited every couple of days - so kind!

Picture from July 18th – Hannah and Micah and friends with Toby and Noah and came to build with them. They visited every couple of days – so kind!

Picture from July 27 as we were all just killing time and hoping the effusion would stop so he could get his last chest tube out!

Picture from July 27 as we were all just killing time and hoping the effusion would stop so he could get his last chest tube out!

Pic from July 28th - we are sick of the hospital, but so appreciated the support!

Pic from July 28th – we are sick of the hospital, but so appreciated the support!

Picture from Aug 1st - the first time Noah was free of lines since he got to the hospital on July 7th!!

Picture from Aug 1st – the first time Noah was free of lines since he got to the hospital on July 7th!!

Toby and Noah heading out for the first day of school - Noah made it!

Toby and Noah heading out for the first day of school – Noah made it!

Hi, all, I confess it was very hard to keep up with my blog while we were living in the hospital. I updated my Facebook the whole time, but I’ve heard from some people who are checking here, and thought I’d just put all those Facebook posts in one place – don’t know why I didn’t think of that before. So my Facebook posts are here and I added extra and new notes in italics. It’s super long, but then, so was the hospital stay!! If you’re brave enough to read a book, dive in!

7/7/16, 10:02 am
Noah’s been in surgery since a bit before 8. It takes a long time to get all the lines in, so the main surgery started around 9:30. The first lyric we heard when we turned the car on this morning to go to the hospital was “You can mend a heart that’s frail and torn.” Isn’t God good?!

I was so terrified. It is so hard to take your kid who looks pretty good and subject them to that, even though you know intellectually it’s for their good. He was so brave. Can you imagine how sweet it was to turn on the radio at 5:30 in the morning knowing what you were facing and hear that lyric?! Noah hated the meds they’d given him to relax him for the past surgeries, so he actually went in awake. I was able to come with him into the OR, but I had to leave him awake. It’s a very intimidating room – I can’t believe he did that, but he did, and he even told me he was fine and would see me later. “You have the hard part,” he said, “I get to sleep through it.” Wow.

4:11pm
Noah is out and recovering! We are back in the ICU with him. They said everything went really well, and his O2’s are already reading 95-98! He is in a pretty good amount of pain and I am very struck by the amount of monitoring on him, so we’d appreciate your continued prayers, but I am praising God that we are on this side of the surgery! Thank you all for praying and for your support! We really have been so touched. I will update again when we get out of ICU or if there’s something significant to say. 🙂

The ICU was impressive and sunny and much happier than I was expecting. Noah looked very scary. He had no color and so many tubes and lines – O2 monitors on his finger and head, oxygen in his nose, three chest tubes, 2 sets of lines through his chest to his heart in case they needed to shock him, 5 “stickers” and a box for the heart monitor, about a 12″ incision, arterial lines in his neck and wrist, IVs in both arms, catheter… more that I’m not remembering. But his monitor was reading 98 percent O2 sats when we came in and I never thought I’d see that number – his average before surgery was about 75. We have a dedicated nurse just for us, and have multiple dedicated doctors on this unit, and we feel as safe as we can feel. He was not awake at first, and then when he was I wished he wasn’t – he was in a lot of pain and wanted a drink so badly that he couldn’t have. Just so hard to see your kid like that, it makes me teary. One interesting thing – he woke up in English. We had an interpreter standing by in case he needed that with all the drugs in his system, but he woke up asking for water in English. Just amazing.

July 8, 1:41pm
Unbelievable (except for all the prayer!) but we have been released from the ICU! We’ve been in the step down unit for about an hour. He’s doing well medically, although struggling with pain and nausea quite a bit. Please pray that he can eat so they can see that his system is working and we might be able to get a couple of these chest tubes out – they are very uncomfortable. We’re going to try walking a few steps later tonight. Again, we just continue to thank you all for praying – it has totally touched our hearts!

Noah’s biggest problem at the beginning was balancing pain and sickness. The meds they gave him for pain made him ill and he was throwing up frequently which is obviously extremely painful and started the cycle again. They worked hard to find a balance for us, and once we could get him off the heaviest narcotics, things started looking up. But the first 3 days were extremely tough, and the first 5 were much harder than anything I’d done or expected to have to do with my kids.

July 9th, 5:59pm
Update for the day: Noah had a pretty good day and is definitely less sick – thank you for praying! He was even able to eat a few bites of real food for dinner which is a huge improvement. He’s still having a good bit of pain, and there are some concerns now about his lungs because breathing deeply is painful (moves his sternum) and there were some air pockets so they don’t want to pull his chest tubes as that could cause his lungs to collapse. Please pray with us for his breathing and comfort, but he’s a lot more like himself today and even watched a movie and talked to me during lunch, so it’s good to see our little guy coming back to himself some! Again, thank you so much for praying with us!

One thing that was really concerning Nathan and I was that after the surgery, Noah seemed to be in shock. Even after the anesthesia wore off and the heaviest drugs were out of his system, he would just stare at us and not respond when we talked to him, or if we asked him a question three or more times, we might get a one word answer. This is from a boy who never stops talking. I was getting quite worried – you think about oxygen deprivation from the bypass machine and things like that. But a few other adoptive heart moms (I’m connected on a Facebook page with them) told me this was pretty normal, especially since our kids have had trauma in the past, and this day, he started talking to us a little more and I was just relieved to see a bit of his personality re-emerge. It took about 5-6 days for me to feel like we really had our Noah back.

July 11th, 10:38am
This is a kiddo who’s starting to get his mojo back. 🙂 Down to one chest tube, got another one of his IVs out today, got a decent night’s sleep, and everything’s looking just a little bit brighter.

This was the first picture I felt I could post of Noah without disrespecting what he might want out there publicly. He had gotten most of his lines out – we were down to two IVs, one chest tube, heart telemetry, and an O2 on his finger, and he was feeling like he might survive. We were still worried about his lungs – hard to explain all the technical stuff, but they were worried about pneumonia and his lungs collapsing, and Noah had to do breathing treatments that really hurt him – it was tough, tough, tough.

July 12th, 12:12pm
Some good news and some bad news today. Good news is that Noah’s lungs look great now, so that is a blessing. Bad news is that his lymph system is freaking out a bit. So, this is not scary yet, but it is annoying because it means the chest tube is staying for quite some time, Noah’s on a special diet now, and we’re definitely in the hospital longer. The doctors tell us it’s unpredictable, but it could last a long time or turn off “like a switch” so I’m asking for prayer for that! We do not want to be here for weeks! Thanks!

So, apparently the procedure Noah had is done right on top of the main branch of the lymph system and this complication is pretty common after this procedure, but it doesn’t make it any easier to deal with it. He had what is called a chylothorax or chylous pleural effusion. It just means that his lymph system was leaking fat and fluid into his chest cavity. Again, this can collapse the lungs, so we needed his last chest tube to stay in until it stopped. They put him on an almost fat-free diet, the idea being that if the lymph system has less fat to process, it will be less stressed and heal faster, etc. So now, my kid who really misses Chinese food and doesn’t particularly like American food is on fat-free, diet, American, hospital food. You can imagine how that went over. We were told this would extend our stay, but sometimes it’s for a week or two and sometimes it can literally be months. That not knowing is hard to live with, especially with a kid who wants to know the plan. He just got a home, and he really wanted to go back to it.

July 15th, 2:08pm
Couldn’t really help but post this one – someone brought him a Husky, and somehow it got on his head! That kid is cute. 🙂 Not a lot to report except that things, while slow, are going in the right direction and so it’s just a waiting game. Hoping to have this chest tube out in a couple of days and then a couple more days to make sure his body adjusts to that and then we’ll see. But the little man is up and playing a lot more and just generally so much more comfortable! And the coffee’s not half bad, so I’m surviving too. 🙂

I was pretty optimistic at this point because his chest tube output numbers were falling. That stalled later, but on this day, one week out, Noah was starting to feel decent and wanted to play games and watch movies and we all just thought we’d be there another 5-7 days and it would be good.

July 17th, 1:05pm
Well, it’s day 11, and sadly, we are officially stalled over here. Noah has not had much progress with his lymph system, although it’s not getting worse either. We’ve also had a few concerning/confusing fevers and arrythmias, so it looks like we will be in the hospital for a while. He’s still doing well, and the doctors are not concerned, but he’s definitely getting a little sad about still being here and he’s bored. If you’d like to send Noah a card, you can do that through the hospital website and they will print and deliver it to him -http://www.nationwidechildrens.org/netapps/greetingcard… His unit is H4A. And please keep praying with us!

Noah kept having a low fever, just over 100, every 15 hours or so. Sometimes after trauma, kid’s bodies react strangely, and we thought that was all it was (and still do) but they are very on top of fevers because of the risk of infection. These were just low enough to not count apparently, and we learned to be thankful because the one time it got high enough we had people all over us, a very traumatic blood draw, and massive testing which all turned out fine but we didn’t want to do that again!

July 18th, 7:04pm
Just heard that upon review, Noah’s hospital is giving us an unlimited length-of-stay parking pass – this cannot be a good sign. Sigh. On the upside, though, friends and time in the hospital means you can make amazing Lego creations!

At this point, we are just waiting for the stupid chylous effusion to resolve. There’s really not much to report. We are living here, the other kids visit everyday, we’ve played a million games, done puzzles and built lots of Legos. Just hanging around waiting for the chest tube to come out!

July 21st, 12:35pm
Again, we come to you with some good and some bad news about Noah’s recovery and just appreciate you keeping him in your prayers! We’re on Day 15 after his open heart surgery. The good news is that his heart looks great, he’s feeling really good, off all pain meds, and just his chest tube is a little uncomfortable. The bad news is that he’s not progressing much toward getting this tube out, and we’ve heard some kids can be in here for a really long time with the complication Noah has with his lymph system. They have two potential things to try, one that is not so bad and will likely start tomorrow, and one that has a better chance of working but is really hard and potentially extremely difficult for him considering his history. Both treatments last a week or two and aren’t usually concurrent. If neither of those works, we may be looking at another surgery. Please pray for wisdom for the doctors, for Noah’s body to heal, and for patience as Noah really wants to go home now. Also, please pray for a little almost-three-year-old guy named Walker – we’ve gotten to know his family as we’ve been here, and he’s recovering from a heart transplant. They’ve been here 100 days today on this trip, and it sure puts things in perspective. Thanks!

This was super tough. We didn’t know how much to share because we didn’t know what was going to happen. The standard treatment for a chylous effusion that is not clearing is to take away all food and drink and just feed intravenously for two weeks. Since your stomach is still empty, though, you will be hungry. This sounded terrible. We don’t know a lot of Noah’s history but one thing I do know – you don’t take food away from an orphan. So often food is a major point of trauma for these kids with their histories, and I didn’t want to risk it, not to mention that that sounds really terrible just to be hungry for two weeks! The other potential treatment involved a new medication that had to be given through a pic line which is a hard procedure and also has a greater chance of infection and really didn’t have a lot of info on whether it was helpful or not, so we might just waste two weeks in the hospital trying that. And if neither of those worked, the only other option was to wait it out no matter how long it took, or do another smaller heart surgery which would undo some of what we had just done (again, very complicated) and see if that would help. We told them taking away food was sort of a last resort for us. All the doctors came back that afternoon and said that given his history and age, they wanted to take a day to research all possible options one more time. We continued to pray. The next day they told us they wanted to give him the weekend to see if anything changed on its own, and they scheduled him for his pic line on Monday.

Walker, by the way, was the sweetest little guy, and I got to know his mom pretty well. He was rejecting his new heart at this point and they had to kill his immune system to try to get it to reset. It was a scary and hard time for them, but I’m happy to say that it did work, and he was released from the hospital Aug. 17. He still has a long road ahead of him, but hopefully he’s through the hardest stuff on this go-round.

July 25th
Monday morning. We were scheduled for our pic line today, but after being completely stalled for two weeks, an amazing thing happened over the weekend – his numbers started to drop. I was actually afraid to post this, so I didn’t – we were afraid to hope. I did find his doctor this morning, though, and asked if they were willing to push the pic line to the next day just to see if the trend continued. It did – slowly, but it did. So they agreed to give us a few more days to see if it was just resolving on its own. Please, Lord!!

July 27th, 2:26pm
This is what happens when you’ve been in the hospital this long – the whole family moves in. 🙂 Rinnah’s playing Catan with Noah, Toby’s reading, and Rachel’s on the bed. Thank you so much for praying for us! I’ve been hesitant to post because things have been really hard to predict, but it finally seems to have turned in a good direction! We were set to get a pic line and start a new med this Monday, but over the weekend, he finally made some progress so they decided to put that on hold to see if it was a trend. So far, it looks like it is, and we are so happy to be in a better place! Still not sure how long it will take to resolve, but it is looking much more hopeful this week than it was, and we are thankful!

By this time, each day Noah’s numbers fell a little. They told us it had to be under 50ml from the chest tube to remove it, but since it was taking so long, our surgeon said he would be more comfortable getting under 40. No one wanted to have to put it back (us first in line on that statement!!) and if there’s too much fluid, it will collapse the lung. So we were waiting, and each day they just pushed the pic line back one more day.

July 28th, 11:36pm
Thanks to all the sweet people who have sent Noah cards – they have really brightened up our room! And Sweet Dreams for Kids sent Noah and his sibs PJs today – thank you! Our numbers are really good today and they even started talking through our exit plan, which is amazing. Noah had one pretty scary episode today with his breathing that may or may not set us back a bit (love for your continued prayers for his lungs/ air pockets, etc) so we are back on suction, but hoping that will resolve by morning. All things considered, we are way ahead of where we thought we’d be last week (this is so unpredictable, and sometimes goes on for months!), and we are pretty hopeful that we may get home early next week – we will see what God does!

This was a scary afternoon, and hard emotionally since they’d been talking about Noah going home in a few days just that morning. After lunch, Noah started crying and suddenly he was holding and hitting the left side of his chest and couldn’t breathe and I thought he was having a heart attack. We had a pretty peaceful stay overall, but you realize you’re on a heart floor at that moment – I yelled out the door (we were next to the nurses’ station) and had about 9 people in our room instantly with crash carts and the whole nine yards. It was very scary. When Noah started having pain and trouble breathing and then saw all the people running for him, I think he actually had a panic attack too, so it made it much worse. In the end, they decided it was actually pain from his scar and chest muscles that simulated a heart attack (the cardiologist on the floor said they see that with some frequency after surgery while everything is healing), and even after we got home we’ve seen that if he cries or laughs too hard, he will have a hard time breathing. It’s getting better over time, and they have tested everything and assure us it’s just the healing process. He knows it will get better now too, so he doesn’t panic in the same way which helps, but man, I don’t really want to do that ever again.

After that, he had to have had a bunch of tests including x-rays and they found he had air pockets in his lungs again. Having the chest tube in so long was starting to cause it’s own problems by then, but taking it out wasn’t an option yet, so he was put back on suction and that means he was tied to the bed again. Sigh. He was discouraged but he’s really been such a trooper.

July 29th
So, by now, we were having a little issue with our doctors who were starting to disagree. There’s a whole hierarchy of who makes decisions, etc, and there’s our surgeon and the floor cardiologist and our cardiologist and the cardiology fellow and on and on. We felt strongly that we wanted to be conservative because the last thing I wanted was to pull that chest tube too soon and have to put it back (that process is exactly as bad as it sounds, yes. It’s a large tube that they insert directly INTO YOUR CHEST. Not fun.). We’d had doctors who were very much in tune with this, and our surgeon was all about being conservative, but we’d gotten one new doctor who unfortunately out-ranked all the others on the floor who clearly wanted to pull the tube and get us out of there. We were close, but all of Noah’s numbers were still borderline. Our surgeon had the final say, but we usually only saw him for about 2 minutes at the end of the day after his surgeries, and the team was making their decisions at rounds that morning. I did not want them to decide to pull the tube that day before we saw our surgeon, and I really didn’t want it to be done over the weekend with none of our regular team there. I started praying about this.

About 10 minutes later, our surgeon came in. He had never been there before 4pm in our entire stay, but here he was at 10am. He checked Noah, and I actually heard rounds coming down the hall and heard that doctor say, “We just need to get that tube out today, etc” and they walked up as our surgeon was walking out and he just said, so casually, “Yes, no one touches that tube until Monday. I want to be in the building when it’s pulled, and I want his numbers lower. Thank you!” and walked away. It was actually pretty funny because rounds was about 18 people that day and they were totally silent until someone said at the back, “Well, I guess that’s the plan then.”

That’s hard to put into words, and maybe hard to picture, but it was just such a direct answer to prayer for us! We wanted Noah to come home, but more than that we wanted him safe, and we just weren’t comfortable yet. I was so happy I didn’t have to fight with the doc!!

Aug 1st, 7:01pm
See that?! That’s a kid who is NOT ATTACHED TO ANYTHING!!! Yea! Chest tube out, telemetry off, O2 off, woot! And that’s not the best news – we had awesome numbers over the weekend, and if our x-rays today and tomorrow show that the air pockets have resolved with the chest tube out, they may, drum roll please, release us TOMORROW! Can hardly believe it! One week ago they were telling us to get ready for the long haul and we were hoping to make the opening of school with some really tough treatments. We didn’t have to do any of that! Now, just pray it doesn’t start again (that can happen) but whatever happens, God is good all the time, and we are thrilled that it looks like we are going HOME!!

Well, our prayers were answered over the weekend, and Noah’s numbers continued to drop steadily to the point that we knew it was as safe as we were going to get to remove that chest tube. It was going to take a while to heal because it had been there so long, but he was so thrilled!! And because we live locally, they said they would probably send us home the next day and let us come back for x-rays since that was what they were worried about – they needed to see if fluid was accumulating around his lungs. We were more than happy to bring him back as much as they wanted if it got us home!

Aug 2nd, 10:20pm
And yes, we are home! The boys are already playing, and the dogs had a field day with everyone in the house at once! And my lovely friend and sister Linda brought us dinner – I almost cried I was so happy not to figure that out. Passed out on the couch so hard I forgot where I was! They told us they let us go because we are local – we can bring him back for x-rays this week and next. Otherwise they would have kept us until Friday. But things continue to look good and we’re so extremely grateful to have the whole family together in one house again! Noah was so excited to get to sleep in his own bed! We offered to wake him up every two hours and squeeze his arm and take his temp and make beeping sounds at him, but oddly, he refused. 🙂

It was a super long day, but in the end we were allowed to go home! Noah was so excited to see his bed, and we were just thrilled to all be in the same house again! Nathan and I took turns sleeping at the hospital, so it was just nice to see him again for more than a high five as we switched cars! 27 days later, we were home.

August 22nd, 7:45pm
Awesome cardiology follow-up for Noah today! X-ray was totally clear, no evidence of pleural effusion, heart sounded good, and his scars are healing beautifully. What does this mean, you ask? It means: NO more special diet (which he hated), NO more x-rays for 3 months (unless we notice something), NO more restrictions on him physically, and, drum roll, yes, that boy is allowed to go swimming! So basically, we just treat him like a normal kid from now on unless something happens that tells us to change that. Yea!

Noah went for x-rays every couple days, then twice a week, then more, and each time the amount of fluid in his chest was less. Finally on 8/22 they gave us the all-clear. He was able to start school as planned on August 17th, and now they tell us we don’t have to go back for three months. He was very weak after being in the hospital so long, but every day he’s stronger, and he’s starting to realize what a huge difference his heart surgery is going to make in his life. I asked him if he noticed the other day and he said, “I’m never blue now (he would turn blue with exertion before). If I run, I can run and keep running!” Praise God!

“How can this be God?” – Noah’s heart surgery

July 6th, 2016
Our family on Fourth of July weekend taking a short trip to Amish country before Noah's surgery.

Our family on Fourth of July weekend taking a short trip to Amish country before Noah’s surgery.

Half of Noah's BIG family - my whole side on our weekend.

Half of Noah’s BIG family – my whole side on our weekend.

I’ve sat here all morning trying to figure out how to write about Noah’s surgery tomorrow and our feelings about that. We were matched with Noah 14 months ago and prayed for him every single day. I memorized his videos and started to fall in love with him before we even met. We met Noah exactly four months ago tomorrow. He walked into our lives looking shell-shocked and a little terrified and we were a little terrified too. Now he’s happy and laughing and this morning he told me that he loves his big family and America. This boy we had never met six months ago is my son. And I love him.

Tomorrow he’s having open heart surgery. When I picture what they have to do to him, I feel sick to my stomach. I know this is necessary for him to live, and I know it’s what’s best for him, and yet the thought of him having to go through that makes me break out in a cold sweat. I trust God, and I know this is what Noah needs, and I just wish there was another way.

I wonder, is this just the smallest glimpse of God’s feelings about sending His only Son to earth? He knew what was coming, and He knew that we would crucify His only Son. He knew it was what was best for us, that it was necessary for us to live, but I’m sure He wished there was another way.

We’ve started sharing the Gospel with Noah. His grasp of English has come so far, and he feels safe with us, so it feels like the right time to begin explaining what we believe. Noah comes from a background somewhere between atheism and vague Buddhism with some ancestor worship thrown in (a complicated prospect for a boy who has no information about his ancestors). He had no concept of Jesus before He met us. He accepted without question that we prayed, but when I explained that we were talking to God by doing that, he looked incredulous. Toby has a cube in their room that has the Gospel printed on it pictorially, and Noah brought it to me. Apparently he’d been looking at it and wanted to know what the paper said that was nailed to the cross over Jesus’ head. It is the charge against Jesus at His crucifixion: “This is Jesus, the King of the Jews.” I explained the Gospel to Noah and told him that Jesus was God. He looked at the picture of Jesus on the cross, and then waved toward it as he asked, “How can this be God?”

All the gods Noah has seen are made of gold. They sit in big temples. There are hundreds of them and you can follow them or not. They are revered, feared, cosseted, and powerful. But this One, this God, was a humbled man on a cross. One who died. One who was mocked and spit upon and beaten.

But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed. Is. 53:5

How could this be God? If He was God, why would He allow Himself to be treated this way? It doesn’t make sense!

For the message of the cross is foolishness to those who are perishing,but to us who are being saved it is the power of God. I Cor. 1:18

In the wisdom of this world, powerful people save themselves. They demand respect. They would show their power by painting their world in gold and placing themselves above everyone else. But God has taught us a different way, and He has shown it to us with a different love.

… [Be the same as] Christ Jesus: Who, being in very nature God, did not consider equality with God something to be used to his own advantage; rather, he made himself nothing by taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself by becoming obedient to death – even death on a cross! Phil. 4:5b-8

Jesus came to earth to die for us. He came even though we didn’t deserve it, even though many mocked Him, spat on Him, brutalized Him. He came because it was best for us, because it was necessary for us to live. Sometimes life comes at a great cost.

Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. Roman 5:7-8

Tomorrow we will demonstrate our love for Noah by helping him through this surgery. It’s hard to look at him now, to all appearances healthy when he’s still, and know that we will cause such trauma to his little body. But we also know that his healthy appearance isn’t the truth, and that this trauma is necessary for a much greater good. In the same way, all of us try very hard to look “healthy” on the outside, but without Christ, that appearance isn’t the truth either – we need the sacrifice of Jesus to truly live.

I pray that one day Noah will know Christ. That he will love God as we do and know the truly life-saving power of the cross. I pray that for everyone on this earth. And tomorrow I will be praying that God will protect Noah as the surgeons give him the gift of a much healthier and longer life.

We have gotten many questions about Noah’s surgery. We would love your prayers for tomorrow!

Answers to your frequently asked questions:

Q: Will this fix Noah’s heart?
A: No. It isn’t possible to “fix” Noah’s heart as he is missing an entire pumping chamber. This will reroute his blood system, making it more efficient and allowing his single ventricle to not have to work as hard as it currently does. Rerouting his system should greatly improve his oxygenation, getting it near normal levels which should really improve his quality of life. He will be able to run and play! It will also take some of the stress off his heart, hopefully allowing it to last longer.

Q: Is this his final surgery?
A: Probably not. He will have a gortec vessel implanted which will likely need to be replaced sometime in the next 10-20 years. Some patients with this procedure still need a heart transplant later in their lives.

Q: Will he have a “normal” life expectancy now?
A: They can’t really tell us as the surgery hasn’t been performed long enough for them to know how long people live with it. However, we do know it greatly increases his life expectancy and greatly improves his quality of life which are both amazing and wonderful things. The oldest patients with this procedure are now in their early 50’s.

Q: Will he be able to participate in sports/ have “normal” physical activity?
A: We think so! They can’t tell us how he will respond exactly, and he will not be an Olympian, but most children with this procedure can have very normal, active lifestyles.

Q: What’s the schedule for the surgery/ how long will he be in the hospital?
A: He has to be at the hospital at 6am tomorrow and surgery starts at 7:30. He will be in for 5-9 hours, more likely on the shorter end of that span. He will be in ICU for 1-3 days and then move to a step-down unit on the cardiac floor. We are allowed to stay with him at all times, even at night and in the ICU. The rest of the time in the hospital varies a lot because people’s reaction to this procedure varies a lot. Noah is also significantly older than most patients having this procedure so he may be in longer. They have told us to plan on about two weeks, but it could be three or more or even as short as 7-10 days. We’ll just have to see how he does when he comes out.

Q: What are your prayer requests?
A: Thanks for asking!!! We specifically want to pray for his safety, for the procedure to be successful, for the gortec to last in a miraculous way so he doesn’t have to do this again, for protection for his brain (he has to go on a heart/lung bypass and that can cause concerns with oxygen deprivation), for protection from clots as he is healing, and for our family to bring glory to God with every single person with whom we come in contact at the hospital.

Q: Can we come visit him in the hospital?
A: Do we know you? 🙂 Seriously, yes, after he is out of ICU, if you know Noah personally, text me and we will let you know if it’s a good time. Also, you will need a code to get on his floor. The boy will be very bored and will be allowed to move around and play by then, so don’t forget to bring a game and your sense of humor with you!

Why Fried Rice is Like Life in Christ

June 28th, 2016
The cooked egg and starting the carrots

The cooked egg and starting the carrots

Carrots and onions

Carrots and onions

With the peas and corn

With the peas and corn

Adding in chicken (and egg not in picture)

Adding in chicken (and egg not in picture)

What my rice looks like with the soy

What my rice looks like with the soy

The finished product!

The finished product!

One of the hardest things since Noah’s been home has been feeding him. He is not picky and loves every vegetable, but he misses Chinese food. You can tell he just doesn’t like a lot of the food here even though he’ll eat it. I’ve tried to make him things he’ll like, and we have Chinese grocery stores and things that help, but it’s a struggle – I’m a good cook, but I’m American and I don’t know how to make most of the things he’s used to.

One day I decided to make Noah fried rice. This is something I’ve made for a long time, and I was happy to find that it was very like the fried rice we had in China so I thought it would go over well.

I was prepping all the ingredients and he was watching me. He knew I was trying to make something Chinese-ish, so he was sure it was not going to be good. “Please, mom, please, don’t make me eat this. I no like this!” “Noah,” I said, “I watched you eat this every day for breakfast at the hotels while we were in China. I promise, you like this.” “No mom, I don’t! Please!” “Yes, Noah, you do, I promise. Wait and see.”

I put the egg in the pan and he said, “Oh, no, mom, no! No egg! Please, no egg!” and I said, “Noah, you like this, I promise.” He threw his hands in the air and wailed, “No!” (Did I mention that he’s got a little drama going on sometimes?)

I took the egg out and started cooking the onions and carrots. “Mom! Oh please! No onions! I no like onions! I don’t like this food!” “Noah,” I stated with my customary saintly patience, “I promise, you like this.” “No! I don’t!” “Yes, you do. I watched you eat it every day in China. You like this.” He held his head in despair.

Every single ingredient was met with disbelief or resigned sorrow. “I no like this food.” When I pulled out the soy sauce, he wailed, “This! Mom, I never had this! I know I no like this!” It was all I could do not to laugh. “Noah, I can promise you that after nine years in China, you have eaten soy sauce. I know you don’t believe me, but you are going to like this.”

By the time I started mixing everything together he was basically chanting, “I no like this. I no like this.” But there’s a moment when fried rice stops looking like separate ingredients and suddenly changes over and looks like fried rice. He just stared dumbfounded and then yelled, “Mom! I like this! I like this!” I died laughing – “Yes, I know.”

So why is this like our life in Christ?

How many times have we seen what is immediately before us and said, “No, God, please! Not the (metaphorical) egg! Whatever it is You are doing, I know I don’t like it!” And God answers, “I promise you, I am making something beautiful. We need this part to make it. Trust me, when it’s done, you’ll understand why this part is in your life.” And sometimes we listen and trust, but more often than not, we continue to complain or protest or moan and wonder why this particular thing has to happen. Why did this (insert anything here) have to be a part of my life?!

And yet, God has promised us that He is always working for the good of those who love Him (Rom. 8:28). He is the great Redeemer (Job 19:25, Is 48:17), He makes all things new (Rev. 21:5), and He is in the business of giving us beauty for our ashes (Is. 61:3). When we look at the circumstances of our lives and something doesn’t make sense or looks like we would never like it, can we trust the Lord and instead look to Him with anticipation, waiting to see how He will use it to make something beautiful?

I know when I look back on my life, there are many times He took things in a direction that was unexpected and often unwelcome to me. How much time did I waste complaining? How much patience did the Lord need to use with me? He knows me better than I know myself, and many of my worst times are the very things I’ve seen Him use the most to make beauty in my life.

So now, every time you make fried rice, or eat fried rice, or just look at a scrambled egg, I hope it reminds you that God is an amazing chef. He knows how He’s going to put it all together in the end, and when we get there and see what He’s done, we’ll all be saying, “God! I didn’t know this was what You were doing! I like this! I like this!”

Since I know it will be asked, here’s my recipe. But I warn you, I am an artist – we are not good at coloring within the lines. I very rarely, if ever, measure anything (much to the despair of my husband who tells me lovingly that this is the reason I can’t die). So this is just a basic how-to, more of a method as it were that you can use to invent your own recipe. 🙂 This is a great way to use up any vegetable or meat in your house, so it’s always changing at ours, but here’s my basic go-to for fried rice.

3 eggs, beaten
cooking oil
1 T. minced garlic if you have it, skip if you don’t, no biggie
2 big carrots diced
1 big or 2 small onions diced
some frozen peas and corn, thawed, probably 3/4 cups of each
some shredded, cooked chicken, probably 1 or 1 1/2 cups (you can also dice and cook raw chicken or any other protein)
4 ish cups cooked sticky rice
soy sauce (quite a lot)
salt and pepper
roasted sesame seeds if you have them and don’t forget to throw them in.

Heat a wok until it’s hot (you can use a flat-bottomed saute pan and should if you have an electric stove, but a wok works better and makes it fluffier if you have one), put in 1 or 2 T. of oil to coat the pan. Add eggs and stir and chop until you have lots of bits of scrambled egg – remove to a bowl and set aside. If you’re using raw meat, add a bit more oil and stir fry it now and then remove and put with the egg for later.

Add a bit more oil if needed and the garlic for just a few seconds so it doesn’t burn and then put in the carrots. Stir fry for 2ish minutes until they are al dente, then add onions and cook until they are translucent and the carrots are soft-ish. Add peas and corn and stir fry until they are hot, about 1 minute, then add in the chicken and egg and stir to combine. Put the sticky rice on top (I usually have a little more meat and veggie than rice, like a 60/40 ratio) and pour soy sauce over it until about a third of it has been touched and start chopping it apart and stirring it in – you can always taste and add more soy sauce, and you know you have the right amount when the rice mostly stops sticking together and you have good soy flavor. Stir fry, scraping the bottom often, for a couple of minutes to get yummy crispy bits of rice, adding a good bit of salt and some pepper until you like the flavor. Toss in the sesame seeds if you have them. Voila! If you are like some of my friends, you love this kind of recipe, and if you are like all the others, you are now annoyed by my complete lack of measurements or good directions. Feel free to ask questions in the comments!! And enjoy. 🙂

Who’s Your Daddy?

June 21st, 2016
Noah's card to his dad on Father's Day - notice which word he made the biggest

Noah’s card to his dad on Father’s Day – notice which word he made the biggest

Nathan and the boys in worship on Father's Day

Nathan and the boys in worship on Father’s Day

My favorite picture of me with my dad - I was seven or eight at the time

My favorite picture of me with my dad – I was seven or eight at the time

Father’s Day. For some, it’s a beautiful day of celebrating a guy they love dearly. For some, it’s a painful reminder that their dad never lived up to what a dad should be. For some, it’s the grief of missing someone so vital to their lives, or grieving the fact that they haven’t had the opportunity to be a dad. And for many of us, it’s a combination.

This year for me had a different twist, though. Noah puts an entirely different spin on things. Here’s this 9 year old boy who we plucked out of another culture, country, and language, and said, “Here. I’ll be your Daddy. I’ll be your Mommy.” What does that mean? What is he thinking?

We got up and went to church that morning. It was a Family Sunday which in our church means the kids stay for the service rather than leaving for the children’s program, so Noah and Toby stayed with Nathan and I and the girls. They started worship and I saw that Toby had come to stand in front of Nathan and Noah had come to stand in front of Toby. They were singing, Toby hugging Noah, and Nathan with his arms around them both. I was thinking about my dad which is always a little hard for me on this day, and then the band started playing “Good Good Father” and I lost it a little. Nathan right there was such an amazing picture of what my heavenly Daddy did for me! He chose me and plucked me out of my sin and the life I had in that, and put me in a new space and loved me and everything changed.

In regards to the adoption, we’ve heard a lot of “I can’t believe you did that” and “You must have felt really clearly called” and “I could never do that, you must be saints!” I find myself confused a bit by the hyperbole. Yes, we felt called, but we are in no way saints, and frankly, we haven’t done anything that I don’t think anyone can do. It’s not easy, but it’s also not the insurmountable thing people have made it. We were definitely scared, but God helped us. There were obstacles, but He provides. And whether God has spoken to you audibly and personally or written with a sky-writer over your house “Take care of orphans!!!” it doesn’t matter. He’s told us that in His Word, and therefore, He’s told us.

That may not mean that you are to adopt a child. But, have you ever seriously thought that it might? Have you even let that be part of your conversation with yourself and with God?

Picture this. You see on the news that there’s been a war that leaves thousands dead and incredible destruction in it’s wake. They publish a picture of two little boys, brothers, crouching alone in the wreckage of their home holding each other. Do you know how many people would clamor to know the names of these boys? How many would offer to take them immediately into their homes and families? If you were walking that very street and saw those boys, would you really just walk on by and leave them there?

And yet there’s a crisis of orphans in the world. These kids have been through the war but their picture isn’t out there on Facebook today. We can ignore them because we don’t have to see them. There are children in foster care who have been through the war of abuse and neglect. There are children in orphanages around the world who have been through the war of poverty and earthquakes and medical conditions their parents can’t handle. There are millions of children who need families who will never have their picture published so they can really be SEEN. We, as the big “C” Church need to see them. And we need to be open to the possibility that God really might be calling us to do more.

People have asked us if we want a big family. My family is the biggest blessing on earth to me and I would do anything for my kids. I adore them and love them fiercely. But I did not adopt to get more kids. I’m just being real here. Many people adopt to grow their family and that is wonderful. That was not why we adopted. We had three kids and that was great. We adopted because the Lord sent us places that forced us to see the children in need – to really SEE them. We adopted because we are blessed with a house that can hold more people and resources that would let us care for one more. We adopted because God showed us a little boy who would never get medical care or a family if someone didn’t say, “Mine. Give me that one – I will take responsibility and love on purpose right there.”

At church, they handed out a sheet to the kids called “Fun Facts About Dad” that they could fill out and give to their fathers. Things like, “My dad’s favorite thing to do is ____.” Noah brought his to me so I could read it to him and wanted me to fill it out for his dad. He was very insistent about it. His English is pretty good now, but it’s still hard for him to express himself, and some of the questions were stumping him. The final phrase was “I love my dad because ____.” He was really struggling and I said, “It’s okay, Noah, you don’t have to answer it.” and he said, “No, mom, I – it’s a good, good question! A good one!” but he couldn’t answer still, so I said, “Do you want to say it in Chinese?” and he said, “No! No, I say in English for dad!” and I realized he had tears in his eyes as he was thinking about this and then he whispered to me, “Can you just write ‘everything?’ ‘Everything.’ That is why I love dad.” Oh, my goodness. It’s looking into the eyes of a kid who has never had a dad and seeing just a piece of his heart and realizing the enormity of what this means to him. This is HIS dad. Someone who chose him. Someone who won’t leave, a home he’s been told is his forever. And he’s starting to believe it.

People look at these kids and they don’t realize the blessing they are waiting to be. They think, “Oh, that’s sad, but it’s too hard, it’s not my problem.” And they are right. It isn’t. But I wasn’t God’s problem either, and yet, as my Abba, my daddy, He stepped in to the mess we created here and chose to love on purpose and at great cost to Himself. He said, “Mine. Give me her – I will take responsibility and love on purpose right there.” And He did. He’s my daddy. How can I not try to be like Him as I grow up?

I married a wonderful man. He’s not perfect but he runs after Jesus, and he’s got more integrity than anyone I know. He’s a great dad. I had an awesome dad – hilarious and larger-than-life and he loved me fiercely and beautifully. He was a picture of my heavenly Father. But more than all of that, I have a heavenly Daddy who stepped in, turned my life around, saved me, gave me purpose, and sent me out to do more, love more, choose more. If I’m His, how can I help but to want to love like Him?

Who’s your Daddy?

PS If you want to do more right now, you can start by sponsoring a kid in real need through our partner, Compassion International. We’ve been with them in the field, and know they do beautiful and important work in Jesus’ name – let’s love with actions and in truth together!

Family Weekend and Ministry in Kingsville, OH

June 15th, 2016
Rinnah and Noah waiting for our order at the White Turkey

Rinnah and Noah waiting for our order at the White Turkey

Nathan with Julie and Jessica - they took us to the beach!

Nathan with Julie and Jessica – they took us to the beach!

Noah learning what it means to have siblings and Toby loving it - they took turns burying each other all afternoon.

Noah learning what it means to have siblings and Toby loving it – they took turns burying each other all afternoon.

Noah trying fishing for the first time at Doctor Dan and Stevie's lake

Noah trying fishing for the first time at Doctor Dan and Stevie’s lake

The innocuous looking bookcase in the living room

The innocuous looking bookcase in the living room

Wait, what?!  It's a secret staircase?!  The kids did triple takes - this house is super cool!

Wait, what?! It’s a secret staircase?! The kids did triple takes – this house is super cool!

The writhing pile of fish.

The writhing pile of fish.

Aren't they cute?  Um, in a creepy, fishy kind of way?

Aren’t they cute? Um, in a creepy, fishy kind of way?

Every once in a while I get to go back to a place that’s I have some real history with, and it’s always a blessing. This past weekend, I was back up in Kingsville, OH, at a small Baptist church which has been absolutely lovely to me for many years. They are one of the first churches to ever have me in, and I love that I get to go back and check in with them all every few years and feel like the pastor’s family are personal friends at this point. I mean, back when I was first starting out, I actually had a pretty major car incident getting to this church, and they had my car towed during the concert I was giving (that’s a whole story in and of itself!). When I came back a week later to pick my car up, I found out that the church had done a love offering to cover the repairs for me because they knew we had no way to cover it at that time, even though many of them had nothing to spare either. This is that kind of church.

Well, they are up right on the edge of Lake Erie, so we decided to take the family and just have a fun couple of days before and after. Because of Noah’s surgery, we really can’t plan any kind of vacation, so we’re just taking advantage of the times we can get together. 🙂

We drove up Saturday morning and met Julie and Jessica, Pastor Dave’s wife and one of his daughter’s (he was traveling in from out of state) and they took us to a local hangout – the White Turkey, which has been there unchanged since the 1950’s. And it totally felt like the 1950’s! It was so cute, and the kids had a blast eating outside and getting happy face ice cream cones. Afterwards, Julie and Jess took us to the beach on Lake Erie which the kids loved.

There are not really any hotels near the church, so Doctor Dan and his wife Stevie offered to host us for the night. We headed over there for dinner and had no idea what we were in for – their house is magical! They have a lake and a zip line, Noah tried fishing for the first time, and there was even a secret door in the bookcase to get up to the room our girls stayed in! They couldn’t have been any nicer, and as Julie promised us, they were “super fun!”

The next morning I did most of the service at the church, and it was so fun to reconnect with people I’ve been with many times. We realized that with all my visits, this was the first time any of the kids had been here, so there were many people who were excited to meet them. After the service they hosted a little lunch for the members of the worship teams and I did a little teaching session about worship, etc, and had a q&a time.

Then our family headed out, but before going home, we had to see Pymatuning Lake. I had never heard of this before, but when I was in Omaha last month, one of the men on the tech team was adamant that we had to see this! He couldn’t believe that I was from Ohio and didn’t know about Pymatuning! It is a lake which had carp get in somehow, but since there are no natural predators and no one wants to eat carp, they’ve just multiplied and multiplied, and people throw them bread and watch them fight over it. I know. It doesn’t sound all that great, but he told me I had to see it! And we were already pretty close, so we headed over, bought old bread at the “Pymatuning Visitor’s Center” which turned out to be a wood case labeled “Fish Bread – 2 for $1” on the side of the road next to a biker bar, and went to experience it. The tag line for the town it’s in is “Where the Ducks Walk on the Fish” because apparently the fish are so thick the ducks can walk on them. We did not personally witness this – we saw ducks who were clearly concerned for their feet keeping about 30 feet back from the writhing pile of fish waiting for bread by the walkway. Our family has re-named this experience “the writhing pile of fish.”

Well, I was relieved to see that there was a lot more water than the pictures implied, so those fish definitely could swim away at any time. And there was an impressive amount of fish. And an impressive amount of stale bread being thrown in by an impressive number of people. It was weirdly fascinating. And at one point Noah rolled some bread in his hands to make it more of a ball so he could throw it farther and threw it at a duck – when the duck went to get it, a carp came up at the same time to try for it and we definitely saw a duck and a carp kissing in Lake Pymatuning. So that was pretty special. We may not drive here again, but we’re all happy we’ve seen it, and if you’re on the northern border of Ohio and PA, you can’t miss the writhing pile of fish. 🙂

Update after Noah’s first heart procedure

June 6th, 2016
Noah recovering in the hospital after his heart catheterization

Noah recovering in the hospital after his heart catheterization

He did great, but was so tired for a few days - he kept passing out on the couch and Pepper kept him company

He did great, but was so tired for a few days – he kept passing out on the couch and Pepper kept him company

I wanted to write an update after Noah’s catheterization last Tuesday. It was a very long day. He has some very hard memories and associations with hospitals, so while he did well, it was very stressful for him and for us. He gets very scared but he is such a brave kid. He knows it has to happen so he just gets through it.

The catheterization was first to check all the pressures and make sure that the Fontan procedure was still possible. Most children with Noah’s heart condition have this surgery at a much younger age, usually by age 3, and the concern was that the high pressures from not having the surgery would have damaged Noah’s lungs too much for him to still be a candidate. We have known this was a possibility since we were matched with Noah a year ago, and that is a long time to wait for answers.

They let me stay with Noah into the OR until he was asleep. They told us it would be 3-5 hours. If they got in and it was bad, they would pull out because there wasn’t anything else to do. If they got in there and it was good, they would do a number of things to prep his heart for the Fontan.

Well, 2.5 hours in, they told us it was over and the surgeon was coming to talk to us. I was braced for the worst. She came in and told us immediately that Noah was a great candidate for the Fontan, all the pressures were good which meant his lungs were in good shape, and we could proceed. I burst into tears – poor woman! She had no idea how long we’d been waiting for answers! But I just told her they were happy tears! The reason his surgery was so short was that everything looked so good, there was nothing to prep – he was all ready for the Fontan without any additional procedures!

So here’s your miracle for the day. There is one artery that leads to Noah’s lungs. If it had been built open the way it should have been, the years of waiting would have left Noah’s lungs completely scarred. If it had been closed the way it usually is with his heart defect, he would not be alive. But Noah’s was narrowed – exactly open enough to keep him alive, and exactly closed enough to have protected his lungs this whole time. Just amazing.

God is so good. Don’t get me wrong, God is so good even if we’d gotten bad news about Noah. I believe that with all my heart. But in this situation, it’s just that I can sense His presence and protection over Noah in a way that is truly miraculous and comforting. He has plans for this kid, and He already knew how his heart was working.

After the surgery, Noah had to lay flat for 6 hours. He was pretty agitated coming out of anesthesia, and I was grateful that we had an interpreter, because in that hazy state, he really needed his first language. Keeping him down was very difficult, and I know that weeks in the hospital will be a real challenge for him and for us.

There were several things that blew his mind, though. One, that he got his own room and it had a TV and a bathroom. That was incredible to him. Two, that there was a huge menu he could order from, anything he wanted, and they brought it TO HIS ROOM. He could not get over this. After he came home, he described the process of ordering and receiving food to Toby multiple times. He’s already planning what he will have during his next hospital stay.

I appreciated this stay because we were on the cardiac floor and it gave me a preview of what we would be doing for a few weeks – helps me plan. And I have to say, I was beyond impressed with our doctors and with the nursing care – especially our nurse Eric who was absolutely amazing. It gave me a real sense of peace about the hospital stay.

We heard on Friday that Noah has been scheduled for his Fontan already – it will be on July 7th with Dr. Shinoka. Even though this is exactly what we were hoping for, I am very scared. I’m up at night picturing what they have to do to him, and it’s really hard to keep my mind out of the frightening places and focused on the Lord. But He is with me all the time. And I love and cling to these, some of my favorites verses:

Phil 4:4-9 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

Noah knows about the surgery and is actually relieved to have a date. This has been a big thing hanging over his head for years too, and he’s a planner, so it’s good for him. This first thing he did was ask to see a calendar so he could count the weeks. Then he said, “Okay, got it!” and ran off to shoot Toby with water guns.

So we’d love your continued prayers! And we’ll keep you updated here and on Facebook, etc. Thank you so, so much for your prayers and beautiful messages! We have appreciated them so much!

Noah Update – 2 Months Home

May 30th, 2016
Noah trying a hamburger for the first time - he was so excited and apparently it was everything he dreamed it would be!

Noah trying a hamburger for the first time – he was so excited and apparently it was everything he dreamed it would be!

That's Noah in red and that basket went in!  His favorite new thing on the playground.

That’s Noah in red and that basket went in! His favorite new thing on the playground.

Noah and Toby walking in the neighborhood - they both are (almost always) enjoying having a brother.

Noah and Toby walking in the neighborhood – they both are (almost always) enjoying having a brother.

Noah getting an EKG at his pre-cath appointment.

Noah getting an EKG at his pre-cath appointment.

Noah with some friends on his first field trip - he had to dress like a pioneer and he had no idea what that was.

Noah with some friends on his first field trip – he had to dress like a pioneer and he had no idea what that was.

Looking out at his first field day - a little intimidating.

Looking out at his first field day – a little intimidating.

Water guns make everything amazing!

Water guns make everything amazing!

With his teacher Mrs. Saffel who has done an incredible job getting him settled in school!

With his teacher Mrs. Saffel who has done an incredible job getting him settled in school!

Brothers hanging out in their PJ's before church.

Brothers hanging out in their PJ’s before church.

Noah's first Mother's Day with a forever mother.

Noah’s first Mother’s Day with a forever mother.

First s'more with all the kids!

First s’more with all the kids!

Holding his cousin's new puppy.

Holding his cousin’s new puppy.

Sisters helping him on his first zip-line attempt.

Sisters helping him on his first zip-line attempt.

I just have to start by apologizing for the long wait for an update on Noah – many of you have asked me, so I’m sorry to take so long. The truth is that there’s a lot going on right now. Our family is adjusting so well, but it’s still a big adjustment. I’ve had quite a few events lately to prep and give, and have been spending lots of time at Noah’s school and getting him settled. My assistant, Donna, has been very sick again – her cancer has returned and is in her brain now (please keep her in your prayers, I love her so much!) which has been difficult both emotionally and for the ministry. We’ve been trying to get all of Noah’s medical ducks in a row. Even my dog has been sick. None of it is overwhelming, and the Lord has been so good to us! But it is all time-consuming, and I’ve let this slide.

So, here’s the run-down of what’s been happening with Noah over the last 6 weeks or so since I gave my last update:

4/8-4/12 When I wrote last, I told you all that Noahs’s mouth was a complete mess. He had black and rotten teeth that were literally falling out of his mouth. We knew this was a big problem, but we didn’t realize how serious this was for a heart kid. Our cardiologist got him in as an emergency and when we went for the consult, they told us it could be months before they got him in. Then the surgeon took one look in his mouth and said, “You get my first opening.” We were in surgery three days later on April 12. He ended up having eight molars pulled, but thank the Lord, they were all baby molars and his permanent teeth will come in fine over time. He also had 3 major abscesses that they told us could have killed him at any time – the infection could have gone to his blood stream and with his heart, it would have been over. We had to do it in the hospital because he had to have anesthesia and that is scary with his heart too, and I will say, it was very traumatic. He is very frightened in hospitals and has very bad memories there, so it was a difficult day for all of us to say the least. However, he feels so much better now, and we are so relieved to get all that out of his system.

4/11 This same week we found out that Noah tested negative for pretty much every vaccine which means he either didn’t have them or they weren’t good. Poor kid. He has to do the entire vaccination series again, but they didn’t start them this week because of the dental surgery.

4/13 Noah saw an eye doctor because they told us in Guangzhou that he needed glasses. The entire way there, he was telling me, “In China, glasses, no cool. I no glasses. Glasses no cool.” I told him glasses could be cool in the United States if you got cool glasses and he obviously was not buying it. “I, no glasses.” Finally, when we saw the eye doctor, he couldn’t use traditional methods to test Noah because he has so little English, so after Noah couldn’t read the letters anymore as they got smaller, the doctor made an educated guess and held lenses in front of Noah’s eyes. Noah gasped, grabbed them out of his hands, flung them up and down to look with them, then without, then with them, and then yelled, “Oh dang! I glasses!” It was pretty hysterical even as I tried not to laugh. We ended up finding glasses with “lucky red” on the sides and he decided he would live even though it took positive comments from kids at school before he believed me that it might not be the end of him socially.

4/14 While getting Noah breakfast this morning, he looked around, sighed, and said with a smile, “I like you. I like family.” I almost fell over and cried in the kitchen.

4/15 Our dog, Ivy, had to have dental surgery and Noah spent the whole evening with her after she got home. He just petted her gently and told her he knew how she was feeling because he had had dental surgery too, and that she would be better soon. It was so sweet.

4/17 Noah went to his first birthday party! My friend’s son, Micah, invited him to a laser tag party and he thought it was incredible. He had no idea what he was doing, I was afraid he would be unable to do it physically, but it turned out there was more hiding than running and he loved it. He also thinks cake is pretty awesome and was excited to learn that it might be available to him on his birthday. 🙂

4/18 They scheduled Noah for his heart cath on May 31st. I am suddenly so afraid of all that could happen with the open heart surgery. I thought I was all good, but I guess not. God has been so sweet with me, and has given me my peace back, but it’s only in Him.

4/19 Noah had to have 5 shots at once today. There was a small window that worked since they don’t want to do his heart cath too close to them, but they also want him to have some protection before it, so poor kiddo had to do them all in one day. I told him ahead of time and he took it like a champ. He’s so brave.

4/22 I left for the first time for the weekend to do three shows in IL (see previous blog post). So hard to leave him and he was a little stand-offish when I got back. Trust is hard. I was happy that he warmed back up to me after a day or so, and hope that as he adjusts and realizes I always come home, this will be easier for him.

4/27 Noah and I have been going together to school for half days for a couple of weeks now. Last week I went with him in the mornings and then left him for a couple hours in the afternoon and he was doing well. He told me today, “I ready!” meaning he wanted to go to school full-day by himself. Sadly, he got sick and ended up staying home after all that week. But the next week he went and he did great – his class has been so amazing to him, and he loves his teacher, Mrs. Saffel.

5/1 The pianist I worked with for years at my old church was retiring, so we went back to Faith Covenant to celebrate with her and Noah got to meet many, many people who had/have been praying for him.

5/6-5/8 My in-laws came down and Noah got to meet his grandma for the first time and see his grandpa again. He has loved having so much family, and I have been touched to see how openly everyone has just taken him into their hearts.

5/8 Our first Mother’s Day with Noah. Don’t even know how to put that into words.

5/9 Noah went to his pre-check at the cath lab to get ready for his “small heart surgery” in the cath lab on May 31st. This is to prep him for open heart surgery later in the summer. He did okay, but he is still very nervous about hospitals and all medical things. One of the medical people had somewhat pointy teeth and he asked if she was a vampire. Sheesh. This is me, cringing. I’m so sorry! But this woman works in a Children’s hospital, so she just answered without missing a beat, “Maybe, but you’re lucky – you only come here during the day!”

5/14 We got out the firepit on a beautiful evening and taught Noah to make s’mores. He thought this was frightening but interesting. He hasn’t learned that the word “scared” is different than “scary” so he kept saying, “This fire. I very scary.” We kept giggling. He’s so stinking cute! And s’mores were a hit!

5/16 I’m back from Nebraska (see previous post) and just realized that we haven’t used Google translate for anything but the occasional vocabulary word in about 2 weeks. Really. We are absolutely shocked by how fast he is picking up English. We think he now understands 80-90% of what is said to him, and he can totally communicate what he needs to say in English. When our Chinese friends come over now and speak to him in Chinese, he answers in English. He tells us he is American. We will start him in Chinese school this fall because we don’t want him to forget, but right now it is very important to him that he is like his new family.

5/20 Today was field day at school. I thought it would be impossible with his heart, so I came with him, and he ended up staying for the entire day! He only sat out a few stations – I was absolutely shocked. Nathan and I have already seen an amazing improvement in his stamina since he’s come home. I think it’s just because we took the restrictions off him. In China, they don’t let the heart kids move much because they think it will kill them, but our doctors here told us they really wanted him in better shape before his surgery, and we see it happening before our eyes.

5/22 There was a baptism today at church and I got to explain what it was to Noah. He thought it was interesting and wanted to know more. Then he wanted to know if the water was cold and told me, “I probably never do this. Unless I do this with warm water. Can I warm water sometime?” Which was pretty funny to me. I told him if he wanted to be baptized we would definitely try for warm water, and he seemed to think that took care of it.

5/23 Noah has been telling us for quite some time that he loves us. But tonight, when I put him to bed, he whispered it in my ear and it was different. I know he was saying it for real, not just as a phrase we say. Such a beautiful moment and it made me cry.

All of May. Noah has seen about a zillion music recitals, auditions, competitions, and shows because all of his siblings are involved and it’s May. That’s what May is. Poor kiddo asked me if we really did have a concert every other day all year. Nope. That’s just May. Okay, and December. I promise it won’t always be like this!!

5/24 Today we received Noah’s Certificate of Citizenship. From my Facebook: I told him it was a very important document, and he asked why. I couldn’t figure out how to explain it with limited English, so I just said, “It means you live here in the United States” and he looked very serious and said, “I stay here, right, mom?” and I said, “Yes, you stay here forever” and he punched both arms up to the ceiling and yelled, “Yea!!” What I didn’t say there was that I had no idea if he would think it was a good thing or not that he was here forever – he still misses China often. So that response just put me over the moon for him and for us.

5/28-29 We took Noah up to meet some of his Michigan cousins and he ended up having the best time of his life. He touched a chicken. He played with their new puppy. He tried a zipline (yes, these cousins have an incredible yard!). He shot people with Nerf guns. He got in the car to come home and immediately wanted to know when we were coming back! And then he fell asleep for 2.5 hours. 🙂

Tomorrow morning, 5/31, Noah has his heart cath. This is first of all to see if the heart procedure he needs is still possible – he should have had it many years ago and it may be too late. If it is possible, they will also do a “smaller heart surgery” by cath to prep him for open heart surgery this summer. Please pray for this. In the world of heart procedures, this is not a terribly scary one, but there are still serious and major risks. I would be lying if I told you I wasn’t very nervous for him. He asked me tonight if “we could just skip tomorrow, mom” and he cried quite a bit before bed – he’s very scared. We have already seen so many amazing miracles with every part of this and we know that God has Noah in His hands, no matter how this goes. And we would love your prayers for Noah’s safely, healing, and emotions as well as ours.

Thank you so much!

Circleville, OH and Omaha, NE

May 18th, 2016
The Salvation Army event in Omaha, NE

The Salvation Army event in Omaha, NE

I know I need to write an update on Noah, and I promise it will be the next one! I just wanted to get an update on here about our time in Nebraska and tell you a funny story. And when I sat down to write this, I realized I never put in an event I did in OH as well.

The OH event was in Circleville, only about an hour south of my home in Columbus, so that was great (and apparently I forgot my camera that night, sorry!). Again, since Noah’s not loving me leaving, it was so much easier just to be gone for the evening! First Baptist in Circleville did an outreach event for women, and I think they succeeded beyond their wildest expectations! They had nearly twice the people they were hoping for which was wonderful! They were so easy to work with, and I loved getting to be with them. Since it ended, I’ve also heard from a couple of people who told me they met the Lord at the event, and that’s the best news I can ever hear.

This past weekend I was in Omaha, NE to do an women’s retreat for the Salvation Army. This had come up somewhat last minute, and it was amazing to me how the Holy Spirit put it together. While I was praying about what to speak on, they sent me their theme and it was almost a perfect match – God is so good! I knew very little about the Salvation Army beyond their social programs before I went, but it was a beautiful weekend and I learned a ton too! Shout out to Lieutenant Crystal for not making me wait at the airport for 6 hours, and to Major Kathy for being so great to work with! And I had the privilege of leading a woman to the Lord Saturday night and then again on Sunday, and that was just amazing.

So, funny story now for those who think I must have all my stuff together because I speak for a living. (Why do people think this? I’ve never figured it out, but you are out there, I have met you!!!) So, Lieutenant Crystal was taking me to the airport on Sunday after the event was over, but we had literally 6 hours until my flight, so she asked if I wanted to do anything or needed anything so I wouldn’t have to sit there so long (bless you, Crystal!). I desperately hate shopping, and therefore desperately needed t-shirts so we stopped at Target. While there, I thought, “I will buy some snacks for the plane so I don’t have to pay $12 for a yucky pre-made sandwich for dinner.” One of the things I bought was a box of blueberries. “Hmm,” I thought, “these blueberries need to be washed, and that will be easier now than it will be when I have all my bags with me.” So off to the Target bathroom I went to wash my blueberries. I know, that’s already a little weird, but you do what you have to do when traveling.

So, I’m in the Target bathroom, washing blueberries, and Lieutenant Crystal is standing there pretending this isn’t weird at all because she’s a nice person, and I think “Wow, now I have a dripping box of wet blueberries and there’s only a hand-dryer in here. I wonder if I just stuck them under there for a minute if it would blow most of the water off without cooking them?” And so I did. I just stuck that open box of blueberries right under the hand-dryer. Yup. The hand-dryer that I had failed to notice was an XL-erator. Mm, hmm.

So, as the wind-tunnel-like jet of air came down instantaneously on my blueberries, I realized an important fact. Blueberries don’t weigh anything. Nope. And they fly quickly. In fact, they shot like little blue missiles all across the Target bathroom. A woman and her little daughter were opening the bathroom door just as I did this and I shot them in the face with blueberries. I shot Crystal with blueberries. They ran under the stall doors so the women in there could wonder, “Hmm, why are there are suddenly a hundred little blueberry landmines for me to try not to step on as I use the Target restroom?” And I was the one crawling on the floor frantically grabbing blueberries. And Crystal, bless her heart, acted like that happens to everyone, sure, all the time! And she just helped me pick them up.

I’m sure that someday I will figure out the awesome sermon illustration that story will turn into. But for now, I just want you to know, the half of the box that didn’t fly were, indeed, dry.

Packed Weekend in IL

April 26th, 2016
Noah got a little sick right before I left, so he stayed home from school and hung out with Pepper.

Noah got a little sick right before I left, so he stayed home from school and hung out with Pepper.

At Hinsdale Covenant Church doing a U-Turn event

At Hinsdale Covenant Church doing a U-Turn event

Concert at German Valley Christian Reformed Church

Concert at German Valley Christian Reformed Church

Sunday morning at Broadway Covenant Church

Sunday morning at Broadway Covenant Church

This is so typical of Donna's personality!  Right after having her head shaved and trying a new wig when the cancer came back last year.

This is so typical of Donna’s personality! Right after having her head shaved and trying a new wig when the cancer came back last year.

Things have been pretty crazy here settling in with Noah. Originally, we thought we were going to be able to travel over Christmas to bring him home, so I said yes to a few events in April thinking that we would have been home many months by then. If you’ve kept up with my blog, though, you know that we had several delays due to paperwork and Chinese holidays, etc., that meant we couldn’t go to China until March. We got home just four weeks before I was scheduled for some events in IL. I didn’t want to leave Noah, but fortunately, things were going well, and we thought, well, at least this way he will know what our life really looks like around here.

When I’m gone, my husband, Nathan is always here, and the kids are very used to relying on both of us and whichever of us happens to be home at the time! Nathan travels for work too, so we switch off a lot. We’ve realized that Noah really needs to know the plan, and if we tell him ahead of time what is happening, he will deal with it much better. I started telling him a week before I left that I would be leaving for 3 days and he would see me Friday morning and then I would be home Sunday night after he went to bed so I would see him Monday morning. He didn’t like it, but he took it pretty well. On Friday morning, he was following me around while I packed, though, saying, “You no go. I very sad. I no like you go three days. You no go.” It hurt my heart! I told him that I had only two weekends I had to be gone this spring, and then I wasn’t going anywhere this summer at all (we have had to leave so many months open because we really have no idea what will happen with his heart surgery). That seemed to help.

The trip itself was a blast, though, even though it was exhausting. My assistant/ booking person/ gal Friday extraordinaire, Donna came with me on this one because we were going back to her hometown and she had people to see! I haven’t gotten nearly enough time with Donna lately because as many of you know, her cancer has come back with a vengeance and she’s been stuck in and out of the hospital and in treatments. So this was especially dear time to have with her. Plus, she’s hilarious and a lot of fun! We had a girls’ roadtrip and if the minivan had been convertible we would’ve had the top down the whole time (someone needs to invent this minivan, that would be hysterical!!!).

We got into Chicago Friday night late and then headed to Hinsdale Covenant Church on Saturday morning for their annual women’s spring luncheon. At least, that’s where we intended to go. So, we got there, unloaded the van, and started looking for people. The church was open and set up, but there was no one there. We finally called the coordinator, Heidi, and asked where they all were. She said, “We’re here. Where are you?” I said, “I’m in the sanctuary, where are you?” She said, “Okay, let me walk there. Okay, I’m there. Where are you?” It was at this point that I wondered if I’d looked closely enough at the sign. I walked outside quickly and realized, um, we’re at Hinsdale United Methodist Church, just down the street from Hinsdale Covenant. And how do you say to the woman who booked you, “Um, sorry, can you forget this call? Let’s just pretend this never happened, shall we?”

Donna and I were laughing so hard. We tried to pack the van up super quickly before anyone asked why we were unloading cases at their church! And as we headed out the parking lot, we saw the pastor coming out and we were like, “Peel out!” I didn’t want to share my stupidity with anyone else. So I’ll just tell all of you. 🙂

Wonderful morning with Hinsdale – what a fabulous group of ladies! And it turns out that Heidi has a great sense of humor, which was helpful!

After the event, Donna and I drove about 2 hours to her hometown of Freeport and I did a concert that night at German Valley Christian Reformed Church (not to be confused with German Valley United Methodist Church, ha!) and I actually went to the right church! Donna’s extended family turned out when they heard she was in town – they were way more excited to see her than me! So she had a little impromptu family reunion afterwards at the Culvers. We got to stay with her good friends, Kim and Steve, too and they were just lovely to be with again.

The next morning we got up and drove into Rockford and I did the morning service at Broadway Covenant there. The pastor there came from a church in Springfield, MA and had me in several times while he was there, so it was so fun to see where he’d moved. This may have been the friendliest church service I have ever attended in my whole life, and that is saying something! We had a great time that morning, and even made Donna try Thai food afterwards which was a bit of a miracle.

Such a fun weekend, and particularly special as it was time with my Donna. I can’t wait to get back out that way, and I was so happy to get home and hug my kiddos and my hubby!