One of the things I try hard to focus on each week in my blog entries is being authentic. I could paint you a pretty picture with carefully chosen words about the beauty that blankets our days. While there are breathtakingly beautiful moments every single day, there are also those moments that twist my heart in painful ways. While I can’t eliminate all the ugly we do try desperately to make sure the good outweighs the bad.

This week we had to put a lot of effort towards that balancing act.

Let’s start with some moments of beauty. Malachi got the chance to paint a horse at his therapy session this week. Once you know Malachi you learn how to read his looks. You can tell in these how focused he was. He is very much into writing his letters these days, so writing them on a horse was an even bigger deal!

Levi has been pulling himself up to standing all week! He also has lots and lots of looks to offer…as you can see, he has the look of determination down pat.

Levi also got to go on some boat rides around the house this week; here is a video of his adventures:

Malachi was all smiles at one of our soccer games this week. I love that he smiles with his whole face.

Levi was upgraded to a big boy car seat! Before I get any concerned emails about chest clip placement please know that we were in the kitchen when this photo was taken, simply working on strap height adjustments before we put it into the car. We are safety conscious, so don’t fret!

The boys looked particularly fancy this morning for church. I have matching bow ties for their Easter outfits next week but I suspect Levi won’t be a fan.

Oh Levi, always watching. Always.

Switching gears to the rough patches…

I met with Levi’s eye doctor this week to talk about treatment options for his eyes. Levi was born with a congenital airway birth defect called bilateral vocal cord paralysis. At some point in the first few weeks in the NICU he went without sufficient oxygen and part of his brain started to die off. The spots of damage are very small (based on the scan at 3 weeks old) but we aren’t entirely sure how these spots of damage will affect him long term.

We have discovered though that his brain damage is affecting his eyesight. He has two different eye issues, the main concerning one being that his eyes do not work together to see things. This is simply a brain wiring issue, and there is no way for us to ever correct that issue. However there are some things we can do to try to help get both eyes focusing on the same thing; the goal of this being that his brain recognizes the benefit to seeing one thing with both eyes and re-wires itself.

Levi will undergo eye muscle surgery on May 3rd. At this point we are only going to operate on the right eye slightly but recognize that we may have to in for several more of these surgeries before we get it “just right”. This is also one of those issues that can reoccur at any time, any age. If we do not correct it he will not be able to develop depth perception.

Both eyes are also a little “lazy” so we are supposed to be patching each for 30 minutes a day until they get stronger. The worry is that one eye will overpower the other and vision loss in the weak one will occur.

We take lots of pictures of Levi and at least 70% of them get deleted because his eyes are a little wonky. Here is an example; nothing too crazy, but slight enough to recognize. In this photo it is the left eye turning in but most times it is the right.

We finished up the eye appointment with a whole three hours to kill before our next two appointments. There is a big mall nearby and I thought the boys would like all the busyness that malls can bring. We walked around the mall a few times, ate at the food court, then headed back out to the car to leave for our appointment.

I was literally thinking “Wow, I just rocked that mall trip!” And as I lifted Levi from his stroller to put him in the car seat I heard a loud pop. I looked at his face and it contorted into a grimace of pain. I sat him back down immediately, worrying that his stomach tube had popped out but not wanting to actually look as the whole idea freaks me out.

I reached my hand onto his tummy and swiped it to find it not only flat, but pouring out milk. The tube was no longer there. My heart started to beat fast as I looked for it, and both Levi and I spotted it at the same time. He reached to grab it and put it in his mouth, which made me start dry heaving. I snatched it away before he succeeded, making him cry even harder. The harder he cried the more the milk inside his stomach continued to squirt out.

At this point I was mentally trying to grasp what to do next. I have been trained on changing their tubes, but interestingly (not the right word) enough I had just taken their emergency tube kits out of the van and put them in the house two days before. I looked for a syringe to deflate the balloon and try to re-insert it but couldn’t find anything.

The tube has to be reinserted within 1-2 hours or it can only be done surgically. I was 45 minutes from home/spare tubes and only 30 minutes from the hospital so off to the hospital we went.

Levi munched on his toes while we waited, likely starving since all of his tummy contents had emptied. We finally got it reinserted within the time frame and all is well. I have learned my lesson and put their spare tube kits back into the van!

On Thursday Malachi had some adjustments done to his wheelchair. We want to preserve Malachi’s body from long term positioning issues, but in order to do that we have to use horrible looking devices. We recently got a special positioning collar that holds his head up. It definitely does its job, but I find myself having a hard time actually putting it on him as I don’t want him to be miserable. There is just no way that can be comfortable.

Levi also met with pulmonology on Thursday…lots of trips to the hospital this week! Levi’s sleep study results were excellent with zero spells at a half liter at night! His carbon dioxide retention levels were still in a completely normal range.

So switching back to a good…

Levi has been cleared to trial off daytime oxygen! We are on day three and so far he has done wonderfully. We are keeping him connected to his pulse oximeter to monitor his levels. When he is awake his oxygen saturation stays at 100 and when he is napping it is between 96-98. When he goes into a deep nighttime sleep we put his oxygen back on, as he isn’t ready for that yet.

It feels SO GOOD to have one less wire to worry about. He looks so much different!

Since Levi will be going under anyway on May 3 for eye surgery we are going to try to coordinate his throat scope for that same hour. It is always nice to be able to combine surgeries and have less anesthesia rounds.

Malachi has started playing a new game of waiting until we have a full syringe hooked to his tummy tube and flinging his fist to punch it out of my hand. It then flies all over him, which he just giggles at. It has been a messy week. Little stinker.

I know I mention this often in my blog, but one of the biggest things I struggle with is disappointment. I have this picture in my mind of how things will go and inevitably they never go that smoothly. The disappointment in those moments makes me so angry…like throw things across the living room mad.

This week I had a whole lot of disappointing moments to work through. By the time Friday rolled around I was on the verge of an emotional meltdown. I kept feeling it coming on and tried to regain control only to have the waves hit me hard again.

Dealing with disappointment is the most damaging thing in my relationship with my kids, relationship with Jake, and relationship with God. It brings out a side of me I do not like.

Today is Palm Sunday, the day that the town of Jerusalem welcomed Jesus as he rode into town on a donkey. They waved palm branches to honor him, laid their coats down on the road for before him, and exuberantly shouted:

 

The people were all so excited that the prophecies they had heard about all of these years were finally going to be fulfilled! Here was the king they had been looking for…they one they were promised long ago.

And just days later they would demand that he be crucified, nailed to a cross. And you know what likely played a part in that sudden change of heart?

Disappointment.

This morning there was a minor emergency with the new children’s director and she had to leave the service quickly. On her way out the door she explained that she was leaving and asked if I could cover children’s church for her. I had three minutes to figure out what I wanted to teach these kids, and this concept of disappointment has been laying so heavily on my heart.

I talked to them about the significance of Palm Sunday and as we talked through Good Friday one of the kids interrupted and asking “Ms. Leah, why did the people love Jesus then hate Jesus so much?”

I explained it like this…

What if I told you Humpty Dumpty was going to come into the room for a visit. He was going to come in and sit on a wall, and likely fall, and all the kings horses and all the kings men wouldn’t be able to put him together again. That’s the story we all know, right? We have heard it over and over again as children.

What if that door opens and in walks Humpty Dumpty- the snowman.

The kids all said “No, no, but he is an egg!!”

But is he an egg? There is nothing about the story that tells us what he looks like, or what he is made out of. It is something that has been passed down in illustrations that people have put in storybooks. It is something that our parents told us, or an image that we created in our minds.

Maybe Humpty Dumpty was actually just a snowman.

I explained to the kids that the people in Jerusalem had heard this story for years and years about the king that would ride town. They were looking for a king who would swoop in and establish his kingdom. A man that rode in on a strong white horse, adorned with jewels. They likely pictured someone authoritative, not like the meek and humble man that rode in on the back of a young donkey. They pictured a king who would rule with an iron fist, not a man who taught to pray for those who persecute you.

The man they saw in front of them no longer fit the picture they had created in their minds. And just like I do when I am disappointed, they got more and more angry.

I don’t think that it is sinful to create ideals in our minds. It isn’t a sin to long for things to turn out a certain way, or to even pray for specific results for a request. To the contrary, I think it brings God joy to hear us share glimpses of our hearts with him.

But when our ideals don’t match God’s then the slope can turn slippery. It is in those moments that we are reminded that God is guiding us in a very calculated and specific way, even though the scenery doesn’t match what we had pictured in our minds.

I will continue to struggle with disappointment. It is a big part of my life, and each and every day my boys aren’t healed by God I feel a flash of that pain. But my responses are something I do need to have better control over, and that is something I will be in prayer over this week.

The Lord is near to the brokenhearted and saves the crushed in spirit. -Psalm 34:18

Crushed in spirit is such an accurate way to describe our week. But as this verse says, God is right next to my broken heart, still holding my hand and leading me to green pastures.

My prayer this week is literally Psalm 23: