Weakness Romanticized

Speaking in Christianease, have you ever romanticized the idea of “weakness?” What I mean is, the idea of God displaying his power in your weakness, so therefore the idea of being made weak becomes oddly appealing. I’ve done it, I’m ashamed to saw. Long before Isaiah was ever born, long before I had the responsibility of being a husband and father, back when my biggest worry was pretty much getting a paper done on time, or wondering when God was going to send me a wife, the Christian idea of my faith growing through some kind of trial or weakness seemed strangely appealing.

I’m embarrassed to admit it really. It’s not that I prayed for or wanted some kind of sickness or tragedy. I honestly didn’t want a trial. But I had a very romanticized picture in my head of what it was like for a true Christian to endure through trial. It might compare it to a Hollywood movie where soldiers valiantly fight a war, battling bravely, fearlessly, self-sacrificing, emerging victorious at the end with flags waving and shouts of joy. No one wants war, no one seeks it, but there’s something very appealing about glorious scenes of valor and triumph. I suppose in some way that’s what I thought of when I saw Christians going through trials. “Wow, it’s tough!” I thought to myself, “But in the end of this their faith is going to be so strengthened, and they will stand up more faithful than ever.” Part of me passively thought of these people as spiritual giants. In the midst of their pain and suffering they were rising each day early in the morning, reading their Bibles for 3-4 hours at a time, hiking out to the woods for prayer sessions, and getting up in the night to meditate on Scripture by candlelight. I thought that their faith never wavered. Then reality hit.

After Isaiah was born part of me was ready. Though I was scared and didn’t know what to expect, deep down inside there was almost an arrogant “bring it on!” kind of attitude. “I’m ready for the battle.” I didn’t doubt that the trial of his surgeries and treatments would be painful and difficult, I just thought it would be a special kind of painful and difficult, a glorious kind of painful and difficult; a good kind of hurt. But it wasn’t that; it was not a “good” kind of hurt. It just hurt, and sometimes it hurt badly.

I remember being a little confused at first. I would sit next to my son in the Neo-natal Intensive Care trying to read my Bible. I would stare at the pages, read passages over and over again, flip through and find familiar verses rich with God’s promises. Nothing. No jolt, no warm fuzzies, no sweet aura of peace. I felt nothing. It wasn’t that I didn’t believe the passages, I did, but the emotional rush of triumphant perseverance wasn’t there. The same thing happened when I prayed. I’d seclude myself somewhere for a while and try to pray. Again, nothing. My mind would wonder. I’d be speechless, not knowing what to say. Many times I’d simply pray “God help me.” No “blessed quietness”, no “sweet hour of prayer.”

At first I thought something was wrong with me. “Maybe my faith isn’t real?” I thought to myself on a number of occasions. “Maybe I’m not praying hard enough, or reading enough.” Where was the emotion? Where was the triumph and valor? Where was the charging forth on the field of battle in victory, with the King riding before me?

Throughout Isaiah’s life we’ve had a number of people tell us things like “You’re such and encouragement” or “You’re such an example of faithfulness.” I appreciate the sentiment, and in many ways it is an encouragement because it does let us know that God is indeed using this for his glory, so I’m not being critical. But so often I’ve wanted to say, “You have no idea just how thin the thread is that’s holding me.” At least that’s how I feel at times.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.” – 2 Cor 12:9-10

As Isaiah has grown and we’ve walked through many valleys together with him I have ceased having any kind of romanticized view of trials. And as time has gone by when we’ve had difficult moments, there have indeed been times where God’s word has literally jumped off the page at me, or my mouth was opened freely in prayer, but not always. Weakness is weakness. God is not going to give me a trial that makes me feel more confident in myself or permits me to stand victorious on a field of battle and receive one ounce of glory. HE get’s the glory – all of it. HE’s the brave one, the mighty one, the victor. He cuts my “threads” of self-confidence, emotional grandeur, warm fuzzies, etc. and shows me that he’s holding me with his strong arm.

I picture in my mind of times after Isaiah’s surgeries when he’s recovering. He’s weak, helpless, in pain and emotionally distraught, and I’ve had to lift and carry him for something. It doesn’t matter how he feels about it at the moment, or whether or not my carrying him comforts him emotionally, the point is, I’m carrying him. In a small way I think this reflects what my Heavenly Father does for me. At times I’m broken beyond all words, and he holds me. His sustaining grace is not dependent upon how I feel about it. I may not feel it, but it’s a reality nonetheless.

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The Other Side of Providence

Isaiah came through surgery today with flying colors. God in a very real and powerful way “healed” my son.

This was our first surgery with him that didn’t take place at Batson Children’s Hospital in Jackson, Mississippi.  For six years that’s all we knew. We knew the doctors, nurses, the floors, the restaurants, vending machines, etc. So when we left the house this morning at 6:30, we didn’t quite know what to expect at the Shriners Hospital in Portland. We were not disappointed by any means. We knew that the facility was excellent. I’ve been to one appointment with Isaiah, and Cristy has handled all of the rest as they have fallen on work days for me. But I know enough to be assured that everyone there is looking out for our son’s best interest. Gifted, highly-skilled and compassionate doctors, nurses and staff do everything they can to make us all feel at ease.

There’s a sequence of emotional experiences on surgery day that, regardless of the location, are common. Here’s a brief overview of each stage:

1. The Night Before: Wrestling – I don’t sleep well the night before any of Isaiah’s surgeries regardless of how tired I might be. A thousand thoughts run through my head, some good, some bad. There’s almost like this running dialogue I enter into with the Lord where I praying to him, sometimes under by breath, sometimes inwardly, while at the same time talking to myself, with a lot of rebuking the devil thrown in. One moment I’m thinking of everything that could go wrong, the next I’m repenting of doubt and asking for help to believe.  One moment I’m despising mankind’s fall into sin that brought about such terrible ailments, the next I’m thanking God that he uses such things to bring glory to his name and strengthen my faith. This dialogue goes on through the night. Sleep is fitful.

2. The Trip to the Hospital: One Last Party – One thing that helps calm me the morning of surgery is that Isaiah usually wakes up in a very amiable mood, so he’s cheerful and laughing. This is mainly due to the fact that in order to keep him calm, we let him get up and play with his iPad. He gets to wear his favorite clothes (Buzz Lightyear to be sure), and gets to immediately ride in the van. We’re usually keeping things upbeat with high-fives, Kermit imitations and impromptu silly songs as we ride to the hospital. This morning Cristy and I added to the celebration by treating ourselves to two Grande Dark Roasts from Starbucks.

3.  Checkin and Prep: Apprehension – At checkin is where things get a little more serious and I start thinking again about everything that’s about to happen. We’re trying to maintain the peppy upbeat mood which has now delved into a little bit of dancing (when you have children inhibitions go out the door) and face contortions. But checkin and prep take a while and it’s hard to keep the momentum going when we have to stop every few minutes to talk to this person or that person. They’re putting in IVs, taking temps, asking history, looking at his back, putting on wrist bands, consent forms must be signed, and they tell you all kinds of terrifying things that they’re obligated to tell you. It’s at this point that Isaiah tends to get a little frustrated, and usually by this point that he’s starting to get a little hungry, but food is still a no-no. It’s not a fun time.

4.  The Last Few Minutes: Sadness – The final 20-30 minutes before he goes back are always the most difficult for me. I thank God for the doctors, but I mourn my son’s condition. I wrestle with thoughts like “I’m about to let other people hurt my child.” or “Why can’t I fix this?”  My mind rehearses the scene again and again of them rolling his bed through the double doors to some back room where they’re about to put him to sleep and cut him with knives. This is usually not a good time to talk to me. Isaiah, however, tends to be perfectly fine during this period because they give him valium.  So the last half-hour before surgery in his mind he’s floating across a giant field of ice cream in a flying Lightening McQueen with Kermit the Frog singing to him.  As a joke I always ask the nurse “Any extra for me?”

5.  It’s Time: Courageous Catharsis – When they come and tell us it’s time, it’s usually then that a wave of beefy manliness comes over me, almost as if I’m a solider dreading the battle, but when it comes I want to yell “Charge!”  We pray together and they wheel him down the hall and through the double doors. I vividly remember every image of him in my mind from every surgery he’s ever had. I always have a lump in my throat. On several occasions after they’ve taken him back I’ve had to excuse myself to go to the bathroom where I proceed to lose it for about 60 seconds, then regain my composure.

6.  In Surgery: Reading, Praying and Walking – I typically do three things when Isaiah’s in surgery. I read, pray and then walk.  I typically read my Bible for a bit, all the while praying inwardly. Then after a couple of chapters I walk.  I just walk around the hospital still in a sort of open dialogue kind of prayer.  It’s also a chance for me to stop and look at all of the random generic artwork on the walls of the hospital.  Most people never notice it, and for good reason. The best way I can think to describe it is “fascinatingly dull.”

7.  The Call: Release – All throughout the surgery they call us to keep us updated on his progress. Cristy usually takes the calls on her cell then passes along the info to me if I’m out walking. But  it’s the “We’re closing him up now, everything went well” call that prompts a massive release all over my body. To continue with the battle analogy, it’s almost like yelling out “Cease fire!”

8. Post-Op: More Stress – In some ways, surgery is the easy part, at least for the parents. Isaiah’s asleep, so he’s not feeling any pain. He’s in a back room being operated on, so I can’t see what’s happening. And in most cases, it only lasts a couple of hours. Recovery is where the the aftermath must be examined. Sure we’re relieved by the fact that the surgery is over and went well, but when we walk into that recovery room and see our poor miserable little guy on the bed, crying, snotting and coughing from the intubation, in a room filled with beeps and oxygen tanks, and buzzes and people talking, my stress level hits the roof again. I immediately see that my little boy is not himself. Where’s the laughter, the smiles, the clapping. “What have they done to him?” I want to ask. “Where’s my boy?”

9. Recovery: Waiting – Depending on the severity of the surgery, recovery can be quick or slow. The last surgery he had prior to this most recent one today was the worst thus far. The poor little guy was in pain for almost a week, and then was uncomfortable for at least a month as he adjusted to his new rods. During this time we closely monitor two things. First, we look at his vitals: Oxygen needs to be between about 94-100, temp needs to be below 101, urine output needs to be consistent, etc. We’re right there with the nurses and doctors 24 hours a day, making sure all of these important numbers are where they need to be. But then there’s the emotional aspect, that I think in some ways is even a more important indicator.

10. Recovered: The Other Side of Providence – There’s a definite moment when we reach the top of the mountain and see the sun rising over the valley we were just in. In my mind this happens on the day during recovery when I look over and see Isaiah smiling again, or hear him laughing. It’s when we ask him if he’s hungry and he actually says “yeah” and requests french fries, then proceeds to eat the entire plate. It’s at this moment I quite literally feel a burden lifted and say “That’s  it. We made it to the top.” Sure there are still bandages to be changed, and stitches to be removed and things like that, but my son is smiling and laughing again. It’s done.

This evening Cristy sent me a picture:

 

We made it. Thank you Lord.

Twenty-Four

We’ve been here seven times already. No food or drink after midnight, except for a little bit of water to give him his morning meds. Up early and at the hospital at 7:30. Lots of questions:

-Past surgeries?
-Current medications?
-Allergies?

etc.

Like I said, we can name all of them up until this point:

1. There was the shunt placement when he was less than 24 hours old to relieve the hydrocephalus in his brain.
2. Two days later they operated to close the myelomeningocele (opening in his back).
3. At around 4 months his shunt became blocked (common in the first year) so they had to “revise” it.
4. Tendon release in 2010 to make his legs more flexible.
5. A.C.E. procedure in 2011 to form his appendix into a stoma in his stomach, through which we can insert a catheter to give him antegrade enemas three times a week.
6. Spinal de-tethering in 2011. This was due to the fact that scar tissue from birth had tethered his chord, and so they needed to remove it.
7. Placement of two VEPTRs (vertical, expandable, prosthetic, titanium, ribs, pronounced “vepter”) in his back to correct scoliosis.

It is the VEPTR that will take us to the hospital tomorrow. Seven months have passed, and it’s time to extend them.

When I think about the VEPTR I simultaneously get a pit in my stomach and praise on my lips. It was by far his most stressful and painful an intense surgery. For about the last three years they had been monitoring his scoliosis, which occurs commonly in children with spina bifida. If left unchecked it can progress and eventually cause lots of problems with internal organs and such. Thankfully we had doctors that were really on top of things. In my limited medical understanding, there are only so many options when it comes to dealing with scoliosis, and none of them are great. If the patient is old enough, they can perform a spinal fusion, which permanently straightens the spine out. The downside though is that it stops growth from the point of the fusion down, hardly what you want to do with a six-year-old. In drastic cases, ribs are actually removed to prevent damage to internal organs. The last option we were presented was the VEPTR, two expandable titanium rods placed on both sides of his spinal column that can be expanded as he grows. When he gets older, around age 18, they can remove them and do a spinal fusion once and for all.

It’s easy to see why I get a pit in my stomach. Every 6-8 months the old surgery man is going to come knocking on our door. We’ll stop what we’re doing, and give him our undivided attention for several days. But at the same time I cannot help but thank God for this measure of “healing” that he provides. I’ll admit, there are times when I wonder “Wouldn’t it just be easier if Jesus was walking around downtown Portland and I could take Isaiah to him to be touched?” Yeah, I know there’s a whole lot in that question, but I’m just being honest with what runs through my mind. I know the theological reasons, and I sincerely believe them:

We live in the “already” and the “not yet.” Christ has come, and his first coming was to inaugurate his Kingdom. His miracles were a sign specific to that age to prove his status as Messiah and fulfill prophecy. He will come again, and in his second coming, all will be made perfect.

I believe that, I really do. The problem is I don’t always feel it like I should, and it’s at those moments when I begin to dream about how awesome it would be if Jesus was really walking around downtown Portland. But in reality, though I don’t see him with my eyes, I lay my son at the feet of Jesus every day. Isaiah belongs to the Lord, not me, and though it may not come in the exact form that I want, Isaiah has been “healed” many many times over the course of his life.

For starters, he’s alive, something that in the decades past didn’t always happen with children with his level of spina bifida. God has given wisdom to men and women of the medical profession to know how to place shunts in the brains of little infants, close holes in backs, reconnect organs to make them function differently, etc. These are all medical advances that once didn’t exist. God has over time opened the minds of gifted men and women to learn and apply these things. Though I may not see “complete” healing in this life, with every surgery, every treatment, every medicine I see little “healings”, foreshadowings of what I believe is to come, a full bodily wholeness and perfection of my son.

So tomorrow, though I do not see him with my eyes, I will once again lay my son at the feet of Jesus and pray “heal him.” and trust that he will touch my child no matter what.