I am having some technical difficulties with our internet and it is already after midnight so I apologize in advance if this post seems choppy and short! I am going to try to type it out on my phone.

Let’s kick off this post with a praise report photo:

While it isn’t news that Levi no longer requires oxygen, this moment was huge for me as his momma. It has always brought me peace to know that tucked into the back closet there was a hospital grade oxygen concentrator and lots of spare tanks. I always worried that if the boys contracted Covid or have another major illness that they would require some supplemental oxygen and it might keep us from an ER/hospital trip. We have a portable concentrator we purchased with some grant money a year ago but it isn’t rated to do high liters of oxygen.

But in an effort to step out more in my faith, I called the oxygen company this week and arranged for them to pick up Levi’s equipment. I immediately started regretting the phone call after I hung up as I formulated the “what ifs” in my brain. But watching it get loaded onto the truck and seeing the empty oxygen closet in the bedroom lifted an invisible load off of me. It reminded me that we are witnessing miracles in Levi’s life and airway.

As you can see from the photo, Levi was very stressed by the whole ordeal. Maybe he sensed my hesitation. He didn’t understand why the man was taking them all off the porch and putting them into his truck.

Malachi has had a great week with his seizures. They have calmed back down and shortened back to their normal, but his sleep cycles are still very much messed up. It is rare for him to be asleep by 3am, and more often it is 5am before he completely surrenders.

This week he has been smiling in a new way that I have never seen before. I think it I had to describe it I would say it is a smile of contentment. It has been melting my heart. He has even been smiling in his sleep.

Transparency moment. Initially I was smitten with the new smiles (and still am). But then I started to wonder if this was some special gift from God right before something bad was going to happen. Yes, I am irrational. But the thought of how and when Malachi will leave this earth is something that always lingers in the back of my thoughts. I wake up at least three times each week with a deep ache in my gut thinking that Malachi is too quiet as I slowly turn to see if he is still breathing.

I recognize how unhealthy these thoughts are and I do my best to squash them when they rise up. It is in these moments that I realize that control has more certainly become an idol in my life. And the lack of control causes my heart so much unecessary distress.

But then I remember that Malachi lives a life full of miracles. And it is in the moments that I can’t control that I get beautiful glimpses of God.

Here is a photo of Malachi when he was 1 month old (28 weeks adjusted) and had just reached 2 pounds. God has preserved this mighty warrior for mighty reason.

Levi has been talking more and more and watching his vocabulary grow is so much fun. I get excited each time he says a new word, and even more excited when it is in the correct context. He has been singing praise and worship a lot with me this week and I took a quick video this afternoon to share with you:

He has also been getting into a lot of mischief and mascara.

Now that the boys have all had Covid we have been getting a little braver about taking them out to a few local places including church. They have been so overjoyed to see friends again and it has been a breath of fresh air for our family to worship together again. We still take precautions and distance as much as a three year old will allow.

The boys had some fun playground days this week with some local friends with a very special connection! The husband is a respiratory therapist at the hospital and works in the ER at the children’s hospital. He has helped us through many many emergency trips and Malachi always recognizes his voice. And his wife was one of Malachi’s NICU nurses when he was a baby. What a special friendship we have!

Malachi and their 4 year old son played like best buds and Levi was smitten with their baby. And she was so tolerant of Levi’s many wet kisses on the top of her head.

As I reflected back that evening on the day I couldn’t help but smile as I got a glimpse of the mysterious ways God connects us with others.

I have learned that there is a dark side and a light side to all situations we encounter. My mood often influences which one my eyes gravitate toward, but acknowledging the presence of good even in the darkest corners of life is what has carried me through some really hard moments.

This is an absolutely horrible analogy, but perfectly fitting so I will toss it at you. Yesterday I turned 35 years old, although sometimes I feel as though I am going on 80. I am very uncomfortable with birthdays as I don’t enjoy a lot of attention, but this year I decided to take a “Leah” day. Frankly I am running pretty ragged these days and wanted an excuse to recharge.

I had planned out the day in my mind, leaving room for naps and wonderfully hot showers in between some of our regular daily duties. Medical mamas don’t ever truly get a day off but a few bonus hours of having the opportunity to focus on non-medical things is rare and special. But of course the day didn’t go as planned; and I couldn’t help but laugh at how horribly it ended. We had a surprise big plumbing issue arise and I spent the second half of my “Leah day” mopping up sewage that had bubbled up in our walk in shower. And you are welcome for that lovely visual haha.

It was midnight and I was sanitizing the bathroom floor for the 4th time and feeling anything BUT recharged. I was focusing on the dark side of the moment, most definitely helped my the fumes the Pine Sol was sending into my nostrils.

And to be honest, looking for the light in that moment was hard for me to do. But I slowly but surely was able to start my list of blessings…that we had a friend with the right equipment to help solve the issue and a heart willing to help with a nasty job. That it happened on a weekend instead of a weekday when Jake would be at work and unable to tackle the fix right away. The fact that I was spending this birthday in my own (stinky) home instead of the hospital again.

Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:16-18

The Bible talks about how important it is that we look different than the world, and that includes our inner thoughts. Looking different than the world starts with our changing our hearts. And one of the best ways I have found to work on changing my heart is found in this verse above. Rejoice always, pray continually, and give thanks in all circumstances.

Think about how much your life could change if you start to focus on these three things. And please know that I am speaking to myself here as well. It is a good challenge for me this week!

Thank you for taking the time to check in on our little family.

Much love,

Leah