Let’s start this week’s entry with a silly story from this morning. Hopefully it will make you laugh as much as I did. And the title of this blog is meant for the devotional at the end but is oddly fitting for this story too.
And a short time-out to acknowledge how big Malachi is getting. Seriously, where did my tiny baby go? Facebook reminded me this week of how tiny Malachi was, hitting the 9 pound mark at 6 months old! My oh my how far we have come from his 1 pound 12 ounce birthday body!
This morning I woke up and looked at my ragged face in the mirror- always a dangerous game and one I don’t often get time to play! We have had a jam packed weekend and Malachi woke up for the day at 3:30. As I looked at the bags under my eyes I decided to take an extra few minutes on hair and makeup before leaving for church. I even took the time to pick out a pair of earrings, something I never have enough brain power to remember. I just wanted to feel pretty this morning for some odd reason.
The morning was going wonderfully and I left the sanctuary with the boys when the preaching began; we always listen from the lobby area so Levi can be his wild self and I can still hear the sermon. I scooped Malachi up and put him on my lap and I suddenly felt the warm sensation of him peeing all over me, and the puddle of urine on my dress confirmed it. I was debating what to do, and I thought the first step should be to fix his diaper so he doesn’t do it again. Without being too graphic, I quickly checked to make sure everything was tucked into the diaper as it should be.
I leaned down to take a quick peek and as I did so Malachi contracted his little abs and shot a two foot stream of pee right into my eyes with a ridiculous amount of force…like a water hose to the face. Within seconds I was drenched, literally dripping urine from my hair. Pee was everywhere…running down my face, running down my arms, and all over the front of my dress….not to mention the puddle that was already on my lap.
I gasped and froze, not quite sure what to do in that moment. Then I realized what had happened and couldn’t stop laughing. I laughed so hard I started crying, which was probably good for flushing the urine out of my eyes. I texted Jake to come out of the service to help and when he saw that I was dripping like a wet dog he too started hysterically laughing. I stepped into the restroom to see what I could do about damage control and I saw the hair I had spent the extra time fixing and the eyeliner I had put on for the first time since Easter running down my face. The whole idea that I had tried and failed so miserably at looking presentable made me start laughing all over again.
Needless to say, I packed the boys up and headed home.
Moments like these tend to come more often these days. I am trying to learn to roll with the punches, but sometimes the moments are just so ridiculous that I can’t help but throw my hands up in surrender.
We met with the Chattanooga pulmonologist this week about Levi’s Cincinnati trip. I had assumed that he had already read the notes that Cincinnati had send over but when he casually walked in and asked how things were going I realized that he hadn’t heard the news yet that his cords were still paralyzed. I delivered the bad news and he seemed genuinely shocked; his reaction was very similar to mine when the surgeon told me. He was confused, doubtful, and flabbergasted.
Levi had a grand ol’ time looking at the boy in the mirror.
Doctor visits are getting more and more difficult and exhausting these days. Levi wants to be mobile and I desperately fight to keep him from touching the germy ground in the medical setting. By the end we are all cranky and exhausted. I took this silly video of Levi as we were passing the time playing with bubbles.
Cincinnati would like for us to do another sleep study off oxygen and make sure that Levi is still breathing safely at night. Sleep studies are in the top three of things I absolutely hate to do to the kids. But if they think it needs to be done we will begrudgingly comply. We will be scheduling that soon, but it usually takes about two months to actually get him in there.
If the results say that he is breathing safely, insurance will be taking all equipment from our home. We have several tanks, an oxygen concentrator, and a pulse oximeter machine to monitor his stats and heart rate at night. He is only needing oxygen when he is sick right now but knowing it is there when we need it brings me peace. I am very anxious about losing the pulse oximeter as it gives me the peace I need to take my eyes off him at night. He is still dipping his oxygen a few times each week causing the alarm to go off so I jump up and make sure he is still breathing and doesn’t have his cords wrapped around his neck.
I looked into purchasing a hospital grade one like his and they are over $1,000. The disposable sensor strips alone are $25 each and he burns through those every 5 days. We may look into trying to get a grant to help cover that cost so we have the ability to monitor his oxygen levels, especially when he is getting sick.
Levi’s new favorite hobby is unrolling the toilet paper from the roll.
The boys have also been so sweet with each other. I tried to snap a few pictures to document the sweetness for you. Malachi has been generously kissing Levi and Levi in turn wants to sit close to Malachi and hold his hand. I love their tender hearts so much.
Malachi went to school three days this week! He is technically a first grader, but he is in a CDC classroom and spends a bit of time in inclusion classes. He was so excited to see his friends and teachers! He is so opinionated these days so I gave him several outfit options to choose from. Do you want to wear Superman? NO Soccer ball shirt? NO Big brother shirt? NO Ninja Turtles? YES YES YES!!!
Ninja turtles it is!
We have been trying something called Real Food Blends with Malachi, a diet that consists of pureed adult foods like salmon, squash, oats, etc made specifically for adults with g-tubes. It has been settling very well with his belly and sustaining him longer than his formula. Last year his school scheduled revolved around his feeding schedule so I wouldn’t take him in until 10:45 and pick him up at 2:00. This week we have been successfully doing 9:30-2:30! That is a really long day for Malachi but he is tolerating it very well, and he hasn’t had a single seizure at school!! That is wild!!
We found a new wheelchair tray and it has been an absolute game changer for his posture in the chair. Such a simple addition but it makes a world of difference for him. He is able to sit up at 90 degrees now and uses the tray for coloring and playing with his toys. This may be my newest favorite picture of Malachi.
We knocked out grocery shopping, 6 therapy sessions, and a handful of doctor visits.
We also attempted some new foods with Levi. Some went well, others not so much.
Saturday we spent an entire day (7:00am-7:00pm) with the soccer team at a play day an hour away. I usually don’t get to go to these and stay all day since Malachi is so heat sensitive and can’t be outside for long periods of time. Our amazing friends volunteered to drive their air conditioned travel trailer out to the fields for us so we could have a comfortable place to sit with the boys between games. The gesture blew me away. The more I thought about their kindness the more it impacted me. Our days can be very long and very challenging and when someone chooses to step into our world to find specific ways to help it means so much. It is like a balm to my weary soul.
This morning as I sat with Malachi I started to process what our friends did for us, and I got emotional. Life has never been easy for me and I have not often been a priority to others. I have had to get used to a life of sacrifice even at a young age, and sometimes that prompts some pretty big pity parties. But when we are a child of God, our focus shouldn’t be on our needs being met…we should trust that God will arrange those details for us and instead shift our focus to meeting the needs of others.
As I read through Philippians 2 this evening a few things caught my eye…
The chapter charges us to be like Christ, especially in how we interact with each other.
One of the biggest challenges for me is found in verses 2-4: “Do nothing from selfishness or empty conceit but with humility of mind, regard one another as more important than yourselves; do not merely look out for your own interests, but also for the interests of others.”
How often do we do these with hidden agendas and ulterior motives? We may be doing what seems like a selfless act but in the back of our minds there is a secret reason why we are doing it….do we expect something in return? Do we hope someone specific will notice or reward our kind gesture? How often do we mask our own ugly selfishness? The Holy Spirit is quick to play this verse on repeat in my mind and heart when I am guilty of this very thing.
But if you keep reading there is something noteworthy in verse 7; I want you to read it in context:
5 “Have this attitude in yourselves which was also in Christ Jesus, 6 who although He existed in the form of God, did not regard equality with God a thing to be grasped, 7 but emptied Himself, taking on the form of a bond-servant…”
As I read these words they pricked my heart. How often do I truly empty myself for others? How often do I gladly choose to take on the heart of a servant and give the fragments of the energy I have left to others?
When we are truly taking on a heart like Christ’s we should be looking to empty ourselves, and in turn rely on God to refill us. Why are we so cautious with our kindness, almost as if we believe if we give too much kindness away we won’t have any left for ourselves?
How often do we limit our selflessness due to selfishness? How often do we try to make our selflessness conditional based on our needs at the time?
I know I am guilty of both of these things.
So this week I will be praying for opportunities for me to pour out my reserve. Those tiny fragments I try to cling to are the result of my selfish nature; if we truly want to be like Christ we have to allow ourselves to be emptied.
Alright, my eyes are officially crossing as we approach midnight and Malachi is still wide awake! I am going to work on getting him ready for bed and starting tomorrow with a new, fresh, urine free face and eyes that look to fulfill the needs of others.