This has been a special needs momma week. Those are the types of weeks when we shut off all emotion and go into autopilot mode taking care of medical needs and trying to keep everyone alive. It always sounds so dramatic to word it that way, but the lifesaving moments have been happening every single night as we deal with Malachi seizing hard and contorting his face into his pillow. We are on night 7 of Malachi needing a lifesaving face turn in the middle of the night and the pressure of that is so so heavy. Interesting side note- they all happen at the EXACT same time chunk after I lay him down for bed, like clockwork regardless of what time he lays down. The brain is such an interesting thing. We are sure that this change in seizures is linked to our medication wean we have been working on and will hopefully level back out to his normal soon.
But in addition to that craziness, Levi starting running a fever on Monday evening prompting a trip to the doctor Tuesday morning. Another ear infection which they think is caused by some allergy post nasal drip. He tested negative for all the potential biggies but had a very red throat. He kept saying ”Mommy make it better” while sobbing- it was so heartbreaking.
We started antibiotics for the ear but postnasal drip is always an enemy to Levi’s airway. Anything that touches his throat inside unexpectedly causes vomiting. We slowed down his rate on his g-tube but it still didn’t slow down the vomiting all day and all night. That leads to no sleep, dehydration, and constipation. Most nights this week he was up until 4a-6a until he would finally pass out from sheer exhaustion. He wanted me in the bed with him for comfort, but his bed has high sides that block my view from Malachi. With our weekly seizure struggles I knew I couldn’t be away from him so we rigged up a setup in the big bed and did the best I could to keep everyone comfortable and breathing.
I canceled all of our appointments this week and we hunkered down at home. When Levi is vomiting so much we place old towels strategically around the house and do lots and lots and lots of laundry. As the end of the week rolled around Levi started being able to tolerate more of his g-tube feeds and acting much more like himself.
His vocabulary is growing by the day. The words and phrases he throws out bring so much joy to my heart. I have never known the joy of language development in the parenting journey and I am cherishing it more than I realized. When you have one child that is desperate to communicate but can’t it makes each word a beautiful gift from the Lord. It also serves as a reminder of Levi’s miracle; the voice we were told he would never have due to his surgery.
We are also seeing more of his quick wit and humor. His imagination is a vivid one and he does a lot of pretending and I see a lot of myself as a child in him. We used this week to work on more potty training and we are so close!
I was most definitely in survival mode this week, taking naps whenever and however. Tonight, for example, I took a nap from 9p-10:30p to try to get a burst of sleep before tonight’s challenges begin. Malachi is staying up until at least 3am right now and with Levi staying up even later than that we abandoned any idea of day and night. I have a phrase I use often, “You will never have to repeat the exact same 24 hours” and I have repeated that one often this week.
I have to be honest, I have gone back and forth on whether to share the next chunk with you. I always check my motivations for anything that I include on these posts, as I know the devil can take even the purest intentions and pollute them with self seeking tendencies. But I know deep in my heart my motives are pure and the thought I feel led to share with you is something God has placed on my heart.
As you read above, this week has been a frustrating one. But I can’t say I didn’t see it coming.
Rewind a bit to late July. God had led me to hold a girls retreat in the basement of our home for our high school youth. I had lined up a speaker and sent out details…then Malachi ended up having emergency surgery.
I felt SO strongly that this retreat was still meant to happen. We were scheduled to get out of the hospital on a Thursday and the event would take place Saturday. I sent out the text from the hospital that the retreat was still on!
That was the day that Malachi’s liver failed. I was so frustrated and disappointed about having to cancel the retreat but also felt so much confidence in my heart that this was a calculated attack from the devil. He did not want this retreat to take place. And he was going to do everything in his power to stop it from happening.
We chose a new date but then covid hit our home. So back to the drawing board and we started planning the retreat for late October (this past Saturday). As we inched closer to the day I sensed the devil poising for another attack. When Levi’s fever started I wasn’t shocked. As the week continued and I was running on fumes and fragments of rest I could hear the suggestions and excuses the devil was planting on my mind.
The louder the voice of the devil grew the more firmly I stood, knowing that there wouldn’t be this much resistance to something that wasn’t meant to be spiritually significant to someone at that retreat.
Scripture from 1 Peter 5 played in my mind on repeat as the week ticked by:
“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith…”
Standing firm in the faith. This phrase makes us sound superhuman, but in reality the firmness it references is the mighty hand of God backing you up. Standing firm in the faith is an act of humility, recognizing that your power is insufficient and asking God to lift you up.
Anxiety is not of God, in fact I believe it to be an enemy of God. It feels so insignificant but its power is monumental.
So this week I continued to speak to God about the retreat and felt in my heart it was still meant to happen. And by golly it happened! We had such a God glorifying time filled with worship and some really faith challenging talks. We even somehow got a whole bus of high school girls ready and out the door for church on time this morning. I had a little God wink this morning as Malachi slept in- something he hasn’t done in months. It allowed me to prepare breakfast for everyone and focus on being present this morning.
Praise be to God!
In place of hosting teen Bible study tonight we opted to take the show on the road, scheduling paintball for the rest of our youth.
I will tell you, my two boys have had the absolute BEST time this weekend. They love spending time with the big kids. Levi was the welcome wagon this morning, sneaking down into the basement to wake up the girls for church. I have been really processing lately that his testimony has already begun. It has for all of us. And what a great treasure it is to get to watch his unfold. I wonder which parts of his upbringing will be instrumental in his testimony of knowing the Lord. Exciting times!
Back on track to the roaring lion devil…
The devil is a liar. And a smooth talker. His attacks often are disguised as “looking out for your best interest” instead of menacing and obvious.
The devil’s voice has a tendency to be loud. And oftentimes for me, God’s voice is a gentle and quiet whisper. If I am not being cautious and aware I can hear what I want to be told. I can hear valid excuses, comfort, potential opportunities to catch up on sleep. The devil knows what my heart longs for and promises it to steer me off God’s course.
But God’s voice calls for self sacrifice and obedience. He calls us to follow HIS vision and not our own. He calls for our humility and our dependency on Him.
If you need a good devotional scripture chunk this week I encourage you to read John 10. In it Jesus talks about the voice of the Shepherd and has so many beautiful reminders for us. But I want to leave you with these specific verses:
“But the one who enters by the door is a shepherd of the sheep. To him the doorkeeper opens, and the sheep listen to his voice, and he calls his own sheep by name and leads them out. When he puts all his own sheep outside, he goes ahead of them, and the sheep follow him because they know his voice. However, a stranger they simply will not follow, but will flee from him, because they do not know the voice of strangers.”
Do you know the voice of the Shepherd? Can you recognize it in the darkness of your life, even when you cannot lay eyes on Him? If this is a struggle the best place to start is by digging into God’s Word. Read the words of Jesus. Highlight, underline, and take notes.
I know there are parts of Christianity that can be confusing, and the many Bible translations are definitely one of those topics. The original scriptures were written in Hebrew, Greek, and Aramic. People will always argue that their English version is the best, the most accurate, the most God honoring.
But God doesn’t rely on translations to speak for Him. I believe that when you seek Him, regardless of the translation you choose to open, God is able to speak loudly and clearly to your heart.
If you are new to the Bible I recommend starting with NIV or NASB. If you still have trouble try the Message translation. I grew up with the King James Version. At this point in my walk with God I often look up the same scripture in several translations and allow each of them to saturate in my heart.
But regardless of the version you choose, make it a point this week to look in His Word! Learn His voice. It is beautiful and life transforming.