Early Monday morning the boys and I headed to the children’s hospital for their routine appointments with the pulmonologist. I checked Malachi’s oxygen before we loaded up for the day and he was hanging around 94, relatively close to his baseline so I was certain we wouldn’t cause chaos like we have the last two appointments. Just in case I loaded in the portable oxygen concentrator, pulse ox, and cough assist machine.
We started with Levi and shared his updates from Cincinnati. Levi also has a pulmonologist and ENT surgeon team in Ohio but this doc is our local point of contact. Then we moved on to Malachi. I explained that he had been struggling with sickness for the last several weeks and when he listened to Malachi’s lungs he was a bit concerned that some pneumonia was brewing. He sent us for chest x-rays which came back hazy but not indicative of pneumonia.
He started Malachi on a 14 day course on antibiotics to help clear out his lungs a bit. Malachi on non-maintenance antibiotics is a digestive nightmare. I could go into details here, but I think I will just let you use your imagination. While we finish up these antibiotics we will be staying close to home so I can have a place to change him frequently and potentially do wardrobe changes for both of us when needed….which is very often. He could definitely use a lot of prayers for his discomfort right now.
But those smiles are back this week, and I am so thankful for them.
Now back to hospital day.
After Malachi’s chest x-ray we had been at the hopsital for several unexpected hours and missed our next round of appointments 35 minutes away. I rescheduled those to Wednesday and figured since we were there anyway I might as well knock out Levi’s blood re-draw for the neurologist. His sodium levels have been low and he called a few weeks ago asking us to get new labs done when we were at the hopsital next.
Getting blood from Levi is always a challenge with his medical trauma but this time was absolute chaos. We had to wait in the waiting room of the lab for a bit and his little mind began to escalate; pretty soon he was in full fledged panic mode. I considered leaving but then I felt like I was reinforcing that if he cried hard enough he could leave. So we charged ahead and finally they took us back for the draw. She wasn’t able to find a good vein and asked me to have him lay down on the table. The insecurity of laying down instead of sitting up put him into a frenzy and by the time she successfully entered a vein he was crying so hard he burst it. We still didn’t have enough blood to run so she poked again on the other arm and again his emotions burst that one.
At this point I told her that we were going to stop for the day and asked her to spin what she did get. And unfortunately we found out later in the week it wasn’t enough, meaning he will have to go back and do it again. This is one of the challenges of medically complex kids. I can’t stand having my blood drawn, so I can definitely relate to his emotions. But there is no other way to do it.
By the time we left there I was completely drained and discouraged. The mental load of packing up for an appointment day- packing meds, formulas, machines, and supplies- is a lot. Then the emotional load and physical load take it to another level. When unexpected happens on those days it challenges my control freak nature and I shut down. We stopped by Chick-Fil-A as a reward for doing hard things and then went home to decompress.
Like I mentioned before, we spent the rest of the week staying close to home base and trying to navigate through antibiotic Malachi. The boys were approved for a local grant and I was able to purchase a playground helicopter for them to play together with. It has been such a sweet toy for them to share and use their imaginations with.
This plane has spots for 7 kids and holds 700 pounds. The wings on the front and back serve as teeter totters so the kids riding in the center of the plane get rocked back and forth. But Levi fully believes that Malachi is flying the plane. At one point he even said “Malachi, I need you to pull over so I can get out!” And then proceeded to get frustrated that Malachi wasn’t pulling over.
We made the most of our time at home, cleaning out closets and trying (and failing) to organize medical supplies. Levi is getting taller so he got to shop in the hand me down bins and find some big boy clothes. It is so much fun for me to see him dressed in Malachi’s old clothes. I don’t really know why.
And Malachi has been such a good sport for Levi’s imaginative play.
Our youth group has been busy lately with all kinds of projects and outings. Last Sunday we partnered with a prison ministry called Kairos that does Bible studies with the prisoners. They also take them chocolate chip cookies and our church signed up to make 150 dozen! We tackled it with the teens and some adults from the church and we were able to knock out 1,764 (147 dozen). Malachi and Levi genuinely love spending time with the “big kids” (as we call them).
This week we took the youth group to the local food bank to pack bags. And as the day approached I kept having these vivid memories of one specific day at the food bank several years ago. I was pregnant with our 2nd child but we hadn’t yet told anyone. I remember cautiously delegating, worrying that filling bags would overexert me and I would lose the baby.
The fear that gripped me through my pregnancies was so entangling.
A few weeks after the food bank day we lost the baby. Processing this loss after already dealing with so much loss of normal with Malachi was devastating. We had prayed so fervently for the “right time” to try for that child and had felt God prompting us to grow our family.
Matthew 14 tells the story about Peter walking on water. Jesus had just fed the 5,000 through a miracle and had sent the disciples on a boat to cross the sea while he spent time alone in prayer. When He finished praying He walked across the water and was spotted by the terrified disciples as they tried to weather a storm.
28 Peter responded and said to Him, “Lord, if it is You, command me to come to You on the water.” 29 And He said, “Come!” And Peter got out of the boat and walked on the water, and came toward Jesus.30 But seeing the wind, he became frightened, and when he began to sink, he cried out, saying, “Lord, save me!” 31 Immediately Jesus reached out with His hand and took hold of him, and *said to him, “You of little faith, why did you doubt?
There have been so many moments in my life where Jesus is standing in a storm and inviting me to join Him in it. The confidence that I feel as I take that step off the boat and into the water with my Lord is invigorating and faith building.
But inevitably the storms I have been called to enter begin to intimidate me and distract me from Christ- the very reason I stepped out of the boat. My narcissistic self goes into survival mode, trying to do the work within my calling without the help of Christ. And then I begin to sink.
Every. Single. Time.
Oh how embarrassingly easy it is to forget our need for a Savior.
But even though He has watched me fearfully fail, He continues to challenge me to obey His callings and walk with Him in the storms. We serve a God that doesn’t give up on us, even when He has to reach down and pull us out of danger time and time again.
I have experienced the feeling of sinking more times than I can count. I have felt that water come up over my bottom lip, threatening to take me under. I have allowed the storms in my path to discourage me from the miraculous moments He is also completing in my life. My prayer is that my mind can focus on those special moments walking on water in humility with the Lord and less on my moments of nearly drowning.
I am so thankful for grace upon grace (John 1:14-16). And I pray for the courage to continue to step out of the boat and enter the waves with God when He says “Come”.