Oh Boy

This boy.

Levi has been surprising me this week in so many ways. He always wants to help with whatever care Malachi needs, which is something I encourage greatly. If he sees me check Malachi’s diaper to see if it needs to be changed he will scurry off and grab a fresh one and some wipes for me.

One morning this week I was prepping the formula bags and bottles for the day and Levi was watching me intently, looking for ways to help. I just casually said “Will you go get me one of Malachi’s extensions and a syringe for the top?” I said it jokingly, but off he went. I watched him get the stool from the bathroom, open the correct supply bin for an new extension and open the bag all by himself. He then went to the syringe drawer and opened a new bagged syringe, removed the stopper, and hooked it into the extension successfully for Malachi. He held it up with a proud smile on his face and I looked back with shock and admiration. What a precious little two year old helper.

Look at him go! Here is a video of his soccer dribbling.

Now for every sweet moment there is a rascal one of course. The biggest one from this week was when he removed his shorts, onesie, and diaper before I could catch him. In the diaper removal process some excrement fell out, unbeknownst to me. I chased him for a good bit, then finally caught him and took him to the bedroom to change. When we came out I was horrified to see that my shoe had tracked his poop all over the chase route. Oh boy.

Someone has been sneaking Oreos from the kitchen.

I have been working with Levi on color identification and took a short video to share with you all:

Malachi has been struggling with some seizures this weekend, and we are not quite sure what the trigger is. It could be the weather changing or something else. Regardless of how many seizures he has, he still continues to smile that famous Malachi grin that melts my heart into a puddle.

Malachi is changing into a big boy. I think he has mentally suffered the worst through this COVID phase at home. He craves engagement with others, and has really missed being social. We spend a lot of time outside listening to the nature noises, but he misses people. This week some of our dear friends came to sit with the boys so I could attend a soccer game. Leading up to them coming Malachi was wild eyed with excitement. It made his week!

It was during the wee hours of Friday morning that I woke up to Levi shouting my name from his bed. He does this every night, several times a night in fact but during the hours of 4a-6a Malachi wakes very easily. I jumped out of bed to run over to him and climb into his bed, something that successfully quiets him down. But as I sprinted across the dark room like a ninja he laid down again and drifted off quickly to sleep.

So there I was, standing in the middle of the bedroom looking at both of my sons sleeping peacefully. Malachi looked so small in the big queen sized bed and I knew there was plenty of room for me to sneak back up there with him, but doing so meant risking him waking up. Levi looked so big in his twin bed and I spotted a sliver of mattress I could lay sideways on, but that seemed like a risky move too.

As I weighed my options my eyes grew tired and I decided the safest and fastest route back to sleep would be sleeping on the floor. I couldn’t grab my pillow without waking Malachi, as I use my pillow to support his and keep him from smothering himself. So I did what any sleep deprived mother would do and grabbed a stuffed teddy bear out of Levi’s bed and the bath towel I keep at the foot of the bed to catch surprise nighttime vomits (don’t worry, it was clean).

As I curled up on the floor I couldn’t help but laugh, thinking to myself “This is definitely not the life I imagined I would have.” My husband sleeping soundly in our king sized bed alone, my medically complex kids hooked to machines, and me sleeping on the floor with a vomit towel for a blanket.

Life can be full of surprises.

There are weeks the surprises of this life make me giggle. There are times when they make me roll my eyes. But lately there are times that they make me angry. I have been so frustrated this week by the things beyond my control. I crave easier motherhood, but that is a desire that will never be satiated. In my head I need to accept this, but my heart just doesn’t want to.

Last night I had a anger burst. Long story short, the kids and I were up until 4:45am. It was a series of unfortunate events full of seizures from one and toddler mania from the other. By the end of it we were all three crying and I was just plain mad.

I scrolled through Facebook to try to distract my brain from the reality of what was happening and saw post after post of typical mothers with typical problems. The more I scrolled the more my frustration grew. I remember seeing this photo a few years ago and the phrase has stuck with me since.

I am not disillusioned, I am fully aware that my anger stems from my grief. Grief typically grows from a difficult day, hour, moment. But living life with medically complex kids means living in potential grief every hour of every day. It is not sparked by a memory that simply creeps in every now and then; it is sparked by a very difficult every day life and the reality that it isn’t a rough stage we will likely ever grow out of.

But let’s be honest here…anger is in no shape or form something that reflects God. There is nothing about our anger that glorifies Him, points others towards Him, or makes Him smile.

James 1:19-20 “My dear brothers and sisters, take note of this: Everyone should be quick to listen, slow to speak and slow to become angry, because human anger does not produce the righteousness that God desires.”

I can sit here and try to justify my frustration to you all, but I know that each angry outburst is a moment when I have invited darkness to overwhelm my heart.

So how do I slow down this grief? How do I get rid of my anger? I am working on figuring that out. But for now, I can stop comparing my life to this hypothetical book of what parenting looks like that my mind has created.

When God wrote my story, He knew there would be nights on the floor with a vomit towel for a blanket. And He knew there would be a whole chapter devoted to sanitizing poop smeared floors.

Each of us have been written a unique story. So I am going to try to focus hard this week on the blank pages He is slowly illustrating for me. And I will be working on not getting disappointed when the image on the page doesn’t match what I thought would be there.

Romans 5:3-5 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Much love,


7 thoughts on “Oh Boy

  1. Oh boy, this hits hard tonight. I’ve been struggling so hard this pregnancy with ptsd and anger. Not from HIE, but from the post-HIE son I lost, who passed shortly after his birth. My husband was commenting on how mercilessly blunt I’ve become, and I told him flat out I can’t engage with emotion and protecting people’s feeling when I can barely protect my own. But it’s not a conscious thing, it’s a defense mechanism with me trying to cope with the uncopable this year. I don’t even know how to ask God to relieve me of this burden or give me his mind in this, that just hasn’t worked well thus far. I’m just angry, but that anger is trauma, fear, and grief.

    Some days are just hard, even when his mercy is near it can feel unbearably far.


    • Taryl, I can relate with you so much!! Especially the the engaging with emotion part…I feel like my tank is often on empty so when others require some of that mental reserve from me I get frustrated. Grief is such an intense process.

      There is a CS Lewis quote:
      “What you see and what you hear depends a great deal on where you are standing. It also depends on what sort of person you are.”

      I have to just keep believing that perspective is everything in this journey and years from now I will be able to look back and understand the purpose in the pain.


  2. Oh Leah, your honesty in sharing about your anger-grief is arresting. I’m forced to take a candid look at my own anger and consider how I can trade my illusions for the yet-unseen illustrations God is crafting for my story. Thank you for inviting us into your story.


  3. As a nurse of 32 years who currently works with an atypical, disabled child on the night shift… I always come back to the question when reading your posts of why you don’t have a nurse that will care for your boys at night? Malachi has so many more complications than my patient who gets funding from Medicaid for 24 hour nursing care. As I read your posts I always pray for you because of my concern for your lack of sleep. You are an amazing mom and a great example for Christ with your two boys. But I fear for the extreme affects of long-term sleep deprivation.


    • Hello Sigrid! You ask a very good question, and one that we get often. The short answer is that we have been told by insurance that Malachi is not medically complex enough to receive nursing care. I know that seems unbelievable, but each time we have inquired we have been given the same response. There are certain categories that have to be hit, and he did not hit enough.

      Interestingly enough though, Levi DID qualify for home health when he was initially discharged since he was on oxygen and g-tube feedings 24/7. We searched for a nurse, as did the insurance companies and local agencies and were unable to find anyone. We live in a remote area and they said there is a home health nursing shortage.

      Like you, I often worry about the affects of the sleep deprivation. I have to keep believing that if this is the path God has called me to walk, that He will protect me from a health standpoint. But it is an argument I have with God often haha!


  4. So wonderful to see Levi growing, developing and having so much fun. Prayers answered for sure. The two of you are awesome parents. God definitely knew who would take care of and love those boys the best. Prayers go up for your family


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