This week I made a drive down to Chattanooga with the boys for a soccer game. As I drove through a town close to the hospital I had such an urge to shut my eyes, which obviously wasn’t doable as I was driving. It seemed like every few seconds was another spark for a flashback.
The H&R Block I used in 2013 when Malachi was still in the NICU for tax season. I remember being so bitter that I had to leave his bedside to do such a menial task. I was on the verge of tears during the appointment.
The Texas Roadhouse parking lot where I talked with my OBGYN about the night Levi was born, trying to figure out what we were missing- not realizing yet that his vocal cords were paralyzed. I have a vivid memory of staring down at my hospital bracelet that day…the NICU requires you to keep it on until discharge so it almost becomes a badge of shame as it reminds you that your baby isn’t like everyone else’s.
The Target that I went into the day I was discharged from the hospital after having Malachi- clueless about what to buy. I remember the cashier noticing the breastfeeding supplies I was buying and naturally asked if I had just had a baby. Her question was one I wasn’t ready to answer so I just cried and left the store. The drive down that same bumpy road caused me so much pain that day as I hadn’t ridden in a car since my emergency c-section.
The Wal-Mart Jake and I ran to when Malachi ended up in the ICU with the flu the year after he was born…pre-hospital bag days. We were still believing that our medical journey would end with a completely healthy child who overcame his prematurity. He fought hard and we almost lost him that week. It was a reality check week for our family.
Literally every few seconds I passed another memory. So I focused on the road right in front of me, hoping that the mental attack would stop. But as I focused on the road a low flying airplane passed right in front of me. That took me back to the night I was in the air ambulance with Levi, staring down at the lights of Chattanooga, filled with so much hope as we made our way to Cincinnati.
I thought about the Angel Flight that Jake was able to take to get to Cincinnati to bring Malachi, Levi, and I home for the first time in 5 months. I started smiling thinking about the wager I had with Jake that he would throw up on that flight. Thankfully for all involved, he did not.
As I made that drive on Thursday I ran the gamut of emotions, getting teary eyed several times at some of the harsher memories. But as I looked in the rearview mirror at sweet Malachi and wild-man Levi I couldn’t help but burst with gratitude that I get to share life with them.
Our story has been filled with horrible moments….some people are blessed to maybe have just one or two of those life altering moments in their lifetime. But for our family there are too many of them to count.
But as hard as our story has been, it could have ended up so differently.
I could have flashbacks to picking out headstones, or choosing outfits to bury my children in. I could have flashbacks to funeral days or those moments that doctors came in to deliver the news that my son had gone to be with Jesus.
But that isn’t our story. And my heart is so thankful, even when we deal with the messy.
Today I am blessed with two healthy, happy boys who love each other fiercely. Tomorrow may bring more hard memories, or more unpleasant things but for today we are simply living our uniquely blessed life.
We are thankful for every second that God gives us together on this side of heaven. It has been worth every memory, every fight, every hospital stay, every surgery, every tear.
Check out this photo from Levi just one year ago today and you will visibly see how far the Lord has brought our family!
Once we literally drove down memory lane and got to the soccer game I was able to take a deep breath. The boys love being on the sidelines with us. We have a new chair for Malachi to sit in so he doesn’t have to be in his hot wheelchair. And Levi likes to roam and play the role of assistant coach.
We knocked out six appointments this week but there aren’t too many updates from those.
Malachi loved his water therapy as always.
And Levi watched intently, working on his model poses poolside haha.
Levi has been working hard on his walking this week and is independently staggering long distances. This morning he was chasing after a girl so I grabbed the video camera to catch it on film for you.
Levi has also been so much more vocal lately! I took a video this week so you could hear his sentences. In this one he says “I said doo doo doo dooo…” and sings for you. You can hear his stridor as he struggles to catch his breath. We will be watching this closely to make sure he isn’t getting dangerous with his oxygen.
And of course, he has been thoroughly amused with the fart machine…here is a video:
A friend of ours was selling a giant bean bag couch so we snagged it hoping to give the boys a nice seat they could safely share. It is absolutely massive!
Levi is his typical ornery self. I worked four days at the office this week and he was not a fan of his play pen, even though it is essentially the same size as the office! He just doesn’t want to be told where to play so he screams at me to get him out, which I can’t always do. His new tactic is sticking his fingers into the back of his throat to make himself throw up, knowing that will get my attention. Oh boy! He also did this lovely new move in his car seat on the way back from Chattanooga.
We are finding all the places that aren’t baby proofed around our house. Levi is getting faster and stronger so we have to be on our toes 24/7. He is tall enough now to reach things on the table.
Here is a video of his sheepish door opening abilities:
Malachi was able to attend school three days this week. Sickness is starting to brew in the school system so it will be pretty spotty on which days he will be able to attend.
He has been enjoying life so much these days. He loves to just sit and listen to the world around him.
Speaking of sickness, with the weather changing there is something brewing in me. It could be allergies, it could be a head cold, but either way it has caused a full fledged sinus infection. Any sickness, even the smallest ones, puts us on edge as we watch the boys for signs and symptoms. So far they are both sickness free.
We had the youth group over to the house tonight, our new Sunday night tradition. I try to treat them the way I would have wanted to be treated at their age so we prepare a spread of foods for them and invite them to join us for dinner. You all know the chaos of our schedule…we rarely have time for dinner with just the four of us… but you also know my motto: If God calls you to do something He will never deplete you of the energy needed to accomplish it. If food will motivate them to come and study God’s word with us, then we don’t think twice! We have been exchanging Sunday afternoon naps for cooking, and I haven’t felt a negative difference so I think my motto is proving to be true.
I am doing a study with the girls about beauty and we are talking about the different aspects of the beauty the comes with knowing God. Tonight we studied a verse in Psalm 34.
“Taste and see that the Lord is good.”
Have you ever really processed this verse? How are we supposed to taste that God is good?
But what I think this verse is really aiming to help us realize the difference between knowing about God and truly knowing God.
I can tell you all day about what a cotton candy grape tastes like (yes, that is a real thing). I can describe the texture to you, paint a picture of what it looks like, vividly tell you what it feels like when one explodes between your teeth. I can tell you about the sweet flavor of the juices inside and compare it to other things you might have tasted in the past.
But until you taste one of those grapes you will never really know what it tastes like.
It is easy in Christianity to hear about other people’s God moments and feel that flutter in your heart. It is inspiring to hear testimonies of healings and transformations. But until you experience God, taste God, for yourself you can’t realize how amazing He truly is.
We talk to the youth over and over again about the difference between knowing ABOUT God and knowing God. Once you taste the goodness of God your life will be forever changed.
Is your faith in God based on others detailed descriptions? Is it based on a sermon you heard from a powerful preacher? Is your faith based on commentaries you read? Is it based on Bible stories you read about in God’s word? If so, I want to encourage you to truly TASTE the Lord and experience Him for yourself! Speak to Him and allow Him to speak back. Allow His Spirit to guide your heart.
When you have a relationship with God you will continue to see and taste His goodness. And let me tell you, it is way better than any description that someone might try to give you.
I am headed to bed, but want to thank you all again for checking in on our family each week. I got so many encouraging responses from last week’s post about the eye doctor and I am so grateful to have so many people looking for ways to lift us up. Please continue to pray with our family for more miracles.