This week was a “to-do list”week. My brain was swarmed with the many time sensitive things that need to get done in addition to the hourly tasks that being a mom (and a medical momma) requires. I could tell I was starting to become fragile. I don’t know if that ever happens to you, where you feel like you might start crying at any moment? So in an effort to regroup I started the to-do list and celebrated each checkmark I successfully put on it after each completed task.

It is still incredibly long, but the items I have left are the ones that require time AND mental focus. I am able to sacrifice the time but not quite ready to expend the focus. Maybe this week I will have the clarity of mind to knock a few more things off the list.

One of the biggest setbacks from our wonky sleep schedule is that my prime focus hours are between midnight and 3am, and unfortunately the places I need to call and coordinate with aren’t open during that time slot haha. And yes, Malachi is back to wild sleeping again this week- I celebrated too soon. His oxygen levels have been dipping a bit right before bedtime so we are using cough assist at night as well to help clear his throat.

Aside from oxygen dips and very little sleep, Malachi is doing amazing. He has been hilarious these days with his strong opinions and imagination. The jealousy between Levi and Malachi is at an all time high, and I can only assume Levi’s trip to Ohio fueled that fire. If someone that Malachi really loves talks to/about Levi he rolls his eyes and signs no.

And Levi reciprocates the jealousy. Today he got mad at Malachi and said “I’m going to say something mean to Malachi. Malachi, I don’t like your wheelchair.” This is new territory for us to deal with and to be honest, it is somewhat entertaining to see one verbal child and one non-verbal child get so frustrated with each other. It is a precious gift of normal for us as parents, even though sometimes it doesn’t feel that way in the moment.

Levi is exhibiting some behaviors that we often see post op. He is highly emotional and very guarded, still dealing with trust issues with me specifically. This is always a hard season for us both. These emotions flared at therapy this week when they switched gears and had a giant water slide for the kids instead of riding horses. I talked him through this change and he immediately spiraled.

But then there was Malachi, happy as could be to be flying down the slide like a rocket.

Friday evening Levi pulled his shirt off to get in the bath and in the process it caught his g-tube and pulled it out. This usually causes a quick moment of pain and then sheer panic sets in. Think of an earring getting tugged out of your ear with the back still on. He is very sensitive about his tummy tube and panics often over it with the slightest bump or twist. So to have it come out set him into a frenzy.

The balloon itself (think of it as the “earring back”) popped from the incident so we had to put a whole new unit in. When he was young I could hold him down and get the job done but now that he is larger it takes negotiating and lots of patience. When he is crying and screaming his abdominal muscles contract making it hard for me to get the stem of the tube into his stomach. So we have to get him to calm down and then try insert the new tube.

Fun fact: insurance only allows us to get 4 g-tubes a year for each kid (they have different sized g-tubes). We are supposed to change it every 3 months because the inner components can get worn down from the stomach acid. But I typically try to get 3-5 months out of each one so we have some cushion.

But here is the frustrating part about this week’s incident…I JUST put that tube in for Levi while he was still under anesthesia in Cincinnati two weeks ago. If he has a surgery I try to time the g-tube change with it to reduce the trauma at home. So now we are back to the anxiousness of trying to get a few extra months out of each tube.

I didn’t take very many photos this week due to my mind being focused on other things. But I absolutely love this video of Levi from 2 years ago as he was practicing jumping. Look at that sweet baby:

Malachi is officially registered as a homeschool student this year and I am going to attempt to re-establish routines and structure. Typing that makes me nervous. When I set out to re-structure it often creates opportunities for disappointments and reality checks. It is hard to plan any further than about 6 hours in our world, and when I come up with a beautiful plan on paper something always hijacks it leaving me disappointed.

Getting Malachi to a school building each day by a designated time is just simply not in his best interest. His morning routines take hours and his sleep habits are ever changing. We also worry about the amount of sickness he is exposed to in the school system.

This week I have found so much encouragement in Hebrews 12:1-3 and I am hoping it blesses you too.

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

I have been feeling convicted lately to re-evaluate my life and find the things that “hinder” and “entangle” like the verse mentions. What things are keeping me distracted from my calling as mother, wife, and daughter of the King?

I am most definitely running a race and weeks like this one cause me to question my perseverance. I think perseverance is a mindset so when it is lacking it usually means that my mind is focusing on distractions. Weariness sets in when I allow myself to look to the left and the right, desperately searching for signs of progress in this race. But faith means I trust God, even when I am running in place and not making any forward motion.

God isn’t looking for progress in our race. He is looking for perseverance and intentionality with each step. He is looking for eye contact.

When was the last time you fixed your eyes on Jesus?

Please pray for us this week as we continue to navigate new routines.

Much love,

Leah