In just under two months Levi will turn 3! He is like a sponge these days, soaking in all of the things around him and exploring anything he can get his hands on.
Levi is going through a baby stage and is absolutely fascinated by babies on tv. He will also pretend to be a baby every now and then and when he does that he lets me hold him and rock him for a few seconds.
This week as I rocked him and held him close to me I felt a lump of emotions well up in my throat. Like I have said so many times, special needs grief is so unique and can be sparked by the tiniest moments.
This wave hit me as I flashed back to baby Levi. After Malachi’s rough beginnings my mommy heart was so excited to hold my baby right after birth. But when I woke up from surgery Levi was nowhere to be found. Within the hour he was headed by ambulance to another hospital and I found my arms empty.
After a few days I was finally discharged and got to snatch up my wire covered and oxygen tubed 4 pound baby boy and I cherished those moments. Very quickly those moments of peace were replaced with bad news, surgeries, air ambulances, and LOTS of intubations. When he was on the ventilator I wasn’t able to hold him often- and he was on and off of the vent for the first 5 months of his life. All I could cling to was one day hoping to snuggle my baby at home like a typical mom.
When we finally got the discharge papers we raced back to Tennessee and it was my mommy moment to shine! But as I held his little body close to mine he immediately erupted into tears. It reminded him of the many times he was swaddled to prevent him from pulling his ventilator out. It also reminded him of the many times he was held down for blood draws, IVs, intubations, and so many other procedures.
My sweet baby had associated being held by human hands to inflicting pain, and rebuilding that trust took a long, long time. He never truly got to a place where he was comfortable simply being held, and each time he rejected my attempts to do so felt like a dagger popping yet another expectation balloon.
So now when he crawls into my lap as a two year old pretending to be a baby I am flooded with such emotions…pure joy that I can snuggle my baby, disappointment that I missed this in his early years, pride that he and I have been able to rebuilt the trust the NICU took from our relationship, and plain ol’ overwhelming love for him.
This week we had an appointment day with the Gastroenterologist for both boys. I love when I can pair up a specialist, and right now they share about 7 of them. Levi’s medical PTSD kicked in and when I asked him what he was scared of he showed me his nose (the COVID test from surgery last month). His memory is apparently really good. He screamed and cried for the appointment, then when we went to leave was so happy to be going he told each staff member “love you” as he walked by them toward the exit.
The good news is that both boys are gaining weight really well right now. Before Levi’s birth, Malachi was 40 pounds. Living in the Ronald McDonald House and me not being able to focus on everyone’s needs took a toll on Malachi and he dropped down to 25 pounds. When we returned to Tennessee we went ahead and got Malachi’s g-tube and have been working hard to get back to a healthy weight for him. This week he weighed in at 35 pounds!
Levi is also gaining well right now and is just shy of 29 pounds. The doctor was happy enough with their progress to put us on a 6 month rotation!
We high tailed it out of the office and headed for an adventure! The boys have not really done anything in public since March, so I thought it was time to try an adventure. I had told them both we were headed to the zoo and Malachi’s eyes immediately lit up.
We made the hour drive there and when I pulled in the parking lot was a little more crowded than I imagined it would be. I got cold feet and considered leaving, but when I looked at Malachi I knew he was eagerly listening for cues we had arrived. I pulled into a parking spot and announced “We’re here” and he erupted into a fit of giggles.
I got them out of their seats and headed toward the entrance and Malachi continued giggling uncontrollably. His laughter was contagious and pretty soon all three of us were laughing and squealing with joy. I haven’t seen Malachi that excited EVER. It genuinely caught me off guard to see him so excited about a day at the zoo.
He can’t really see most of the animals, so I describe each one to him. He spent at least the first 20 minutes giggling non-stop. We went straight to his favorite, the jaguar, who so kindly came over to the glass for the boys. Then we went to see the monkeys- I took a video for you so you can see how much joy was exploding out of him:
Levi didn’t shed a single tear this time, even going nose to nose with the jaguar. He was so excited to be out of the house, and was way more fascinated with the other zoo guests over the animals.
The boys each got to pet the goats, but I wasn’t able to get photos of Malachi as holding him takes both hands! Malachi loved feeling the sharpness of their horns.
I was so pleasantly surprised by our ability to avoid all of the other people. We never shared an exhibit with another person and even the trails were empty. We have a season pass that expires in November so we are going to try to make several more trips while we can- maybe even another one this week.
Other random, yet noteworthy moments from our week…
Levi rode his horse by himself at therapy!
Malachi’s new Chill Out chair came in from Canada! We are still finding the sweet spot with it, but overall I am thrilled! His posture is so much better in it than his other comfy option.
The chair has a rocking ability, and it didn’t take long for Levi to discover it. We have to be very close when Malachi is in it- and this video explains why:
And as always, we had moments of pure chaos. This week most of those have revolved around urine. Lots and lots of urine. We are thrilled that Malachi is putting on healthy weight, but his diapers are no longer a good fit. Typically I would get a stack of samples from the medical supply company, as he is now entering adult sizes but with COVID they are no longer sending samples. I purchased several options from Amazon, but the cost is outrageous. I will be working with insurance this week to find an affordable alternative, but until then we are dealing with lots of leaks.
Malachi’s most epic one was when we were away from the house at an all day soccer tournament. We thought the boys would enjoy the fresh air and it was an overcast day, so they sat on the sidelines with us (away from everyone else of course). After lunch I plopped Malachi on my knee for a quick diaper swap out and he unleashed a half a days worth before I could complete the mission. It rolled up my leg, filling my shorts and covering my shirt. The stream went strong for what felt like a minute and by the end even my socks were squishing. I was mortified, as I had packed extra outfits for everyone but me. A friend mentioned that we were less than a minute away from a sporting goods store so I handed the boys to Jake and jumped in the car to find some replacement clothes for the rest of the day.
Malachi laughed at his little tirade and especially at my reaction after. Since then he has been plotting to do it again, laughing each time I get ready to change him again. Stinker.
Overall it was a wonderful week, filled with lots of little adventures that kept us all sidetracked from reality. We even had a nighttime swim in the therapy pool. In the gaps of the days we had lots of medical phone calls, pharmacy pick ups, grocery pick ups, and therapies.
One evening this week I snuck outside to read the Bible and do a devotional. I heard the door creak open and saw curly haired Levi peek around the corner at me then run back in the house. A few minutes later he came around the corner with Jake’s Bible tucked under his arm and casually sat next to me to read his Bible too.
He pretended to read the words, speaking gibberish with such confidence.
In 1 Corinthians 11:1 Paul writes:
“Imitate me, just as I also imitate Christ.”
I have been so challenged this week to examine the example I am setting for others, including my own children. There are days I feel like I am nailing it, and other days I let my worldly nature win out. I saw this photo this week and couldn’t stop laughing.
The truth is that no matter how hard we try, we will never be a “good enough” imitator of Christ. It is impossible to imitate perfection. But we can’t ignore that so many eyes are watching us- watching our reaction, our habits, our motivations, our conversations- to see if our love for Christ goes beyond the church doors on Sunday morning.
We may not always get to see the ripple effect our “different” walk has on the world, but there are small glimpses that remind me the importance of actions over words.
I read an article this week that I really wanted to share with the parents in my youth group, but a friend said it might not be received very well. So instead I will share it with you. It has given me some big food for thought and I hope it does the same for you.
I am not quite sure what proper etiquette is for sharing Facebook articles on this platform, so I want to note that this article came from “Jeremiah Johnson Ministries” Facebook page and was written by Jeremiah Johnson.
Jeremiah Johnson Ministries
I RAISED MY KIDS IN CHURCH, BUT…..“As a church leader and traveling prophetic minister, one of the most heartbreaking conversations to have with so many distraught Christian parents across America right now is the familiar one where they can’t figure out why their kids aren’t serving God after they raised them in church for 18 years. I have wept down in altars and felt the burden of God concerning this issue with hundreds and hundreds of parents along my journey.
One night after preaching at a church service and crying out with a particular set of parents, I got down on my knees in my hotel room later that night and asked God for revelation concerning this crisis in the Church. I went to bed and God woke me up at 3:33 am and said, “Satan is not afraid of anyone who lives IN CHURCH, but he is terrified of those who have learned how to live IN CHRIST!” The voice of God specifically distinguished between “in church” and “in Christ”.
As I sat in that hotel room after hearing the voice of God, great sadness swept over my soul. I realized in that moment what a great deception had swept over the body of Christ. Parents have fallen into the trap of dropping their kids off at youth group and kids church hoping the teacher would invest in their students at the expense of them having to actually disciple their own children in Christ while they were at home.
Like a twisted Hannah syndrome, parents are dedicating their kids to the Lord with the expectation that someone in the church (Eli) will do the discipling for them when this mindset is full of deception.
I’m all for church attendance, but I’m convinced the vehicle God created (the church) for people to actually encounter Jesus Christ and be discipled in Him has become a social club that entertains and caters to the flesh. Videos games and pizza have replaced radical encounters with the Holy Spirit and fire.
All of us Christian parents have to ask ourselves, “Are we/did we raise our kids ‘ in church’ and just expect them to magically serve God the rest of their lives because they heard good teaching in Sunday school/youth group OR are we actually teaching them how to live “in Christ” through discipleship and living by example in our own homes?”
The awakening and revival that so many are longing for is actually going to begin with healthy marriages and sacrificial parenting.-Jeremiah Johnson
As my little Levi continues to grow, I pray that God continues to press on Jake and I’s heart the importance of raising him in Christ. We don’t get a second chance at raising our children, so prioritizing a firm foundation in the Lord has to be intentional.
And seeing his love develop for the Word of God is just so precious to witness.
Please continue to pray for the health of our crew. With cold and flu season creeping in we will have to continue a pretty tight lock down. Getting out and about a bit this week reminded me of how detrimental these past few months have been to the boys, especially Malachi. He thrives on human interaction and being locked in the house all day doesn’t really provide what he needs.