The Throne Room

Let’s start off with a video that I keep watching over and over again in amazement…right before I started filming I asked Levi “Who do you love?” Let’s see if you can understand his response:

Levi, the boy with paralyzed vocal cords is speaking clearly and loudly!!! He said “I love my dad alot alot.” When they first gave us his diagnosis when he was one week old they warned us that he would likely not have a voice, and if he did it would be very quiet.

God is so good!

The jealousy bug has infested our house. If anyone or anything is stealing my attention away from Levi he is sure to make his presence known.

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Malachi actually thinks it is funny to hear Levi whine so he encourages the jealousy in his own silent way, making sure to steal lots of kisses when he is sitting with me and Levi is watching close by.

We had a week packed with appointments and Tuesday was our full day. At 11:30 the night before Malachi was still wide awake so I did what all good parents do and I bribed him. I told him that if he went to bed and slept until the sun came up that I would take him for pancakes. He has still been locked in on the 4:04am wake up time and I knew I wouldn’t survive Tuesday’s long day with the tiny chunk of sleep. I explained to him that if he woke up and couldn’t see the light that he needed to be a big boy and close his eyes again.

Jake laughed at my bribe and rolled his eyes. But Malachi stayed asleep until 5:45!! When I went in to get him out of bed after he woke up he was giddy and squealing with excitement. The sun wasn’t technically up but he knew he had lasted longer than normal so we still sprung for pancakes with lots of butter and syrup. Side note- no one warned me how nasty toddlers can get when dealing with syrup. YUCK!

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Our regular therapist is out of town but thankfully the woman taking her place is Malachi’s hippotherapist and both the boys know and love her.

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We knocked out a few more soccer games.

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And I played with a new phone camera a bit and got some sweet pictures of the kids.

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And one of dad just for the fun of it!

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Jake and I are what the youth group teens call “old school”. We use things until they stop working, regardless of how uncool or outdated they may be. I have been using a very old iphone for years but it still worked just fine so I didn’t see a need to swap it out. But over the last two weeks it has been declining FAST, and this week it met it’s end and had to be replaced. But I will say that the photo quality is such a nice upgrade!

Levi has been working on trying new foods and has really enjoyed playing with fruit. We got him to suck on an apple slice which is big considering his oral aversions!

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This weekend I had the privilege of attending a ladies conference in Alabama with a group of women from my church. Aside from the youth group lock-ins, I do not spend the night away from the boys.

Like any trip, it had positives and negatives. Some people from our group had to back out at the last minute leaving we with a room all to myself! It was so nice to just alone in a room, as crazy as that sounds. I really enjoyed getting the chance to spend quality time with my church friends and get to know some of the new ladies that came along.

It was also refreshing to be able to be spiritually fed. Since we are on staff at our church, almost every service time we are expected to be doing something with the youth. Sunday mornings during service is our time to get spiritually challenged but with Levi’s attention span I can’t stay in the service. I listen to it over the speaker in the lobby but get easily distracted so the focused God time was appreciated.

As for the negatives, I forgot how big crowds freak me out. There are so many germs floating around the room and since it was a ladies conference they would stop and do meet and greets way more than normal. My friends understood my germ fears and were respectful but not before a few strangers leaned in for some big bear hugs AHHHH.

While having a hotel room to myself for a night was wonderful in so many ways, it gave me a few PTSD flashbacks that I didn’t see coming. When I laid my head on my pillow and closed my eyes I automatically drifted to the memory of the night Levi was born. Jake had to take Malachi back to the house and I was alone. Levi had already been transferred to another hospital and I was spending the night without either of my children. I remember the tears coming as I heard other moms in the rooms next to me talking excitedly about their crying baby. And there I was, alone with a fresh surgery scar and no baby to show for it. That feeling of disappointment and desperation is something that I will never forget and hit me like a wave this weekend.

But it truly was wonderful to get away for a bit and take a deep breath. I am thankful that Jake was willing and able to keep the kids so I could focus on God.

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I really thought I could do it this week. I was so hopeful that I could successfully go to the eye doctor with Levi and not cry a single tear. But once you have attached an emotion to a particular place and building, it makes it harder to sever those habits.

I gave myself a quick pep talk and wheeled the boys in for the appointment. I think the devil saw my confidence and decided to attack in the waiting room. As I looked around at the other families waiting for their turn I noticed that literally every child in there had a support group with them….both parents, some even also had grandparents….and I started to feel sorry for myself (oh the stinking devil is quick to attack).

Between the two boys we have too many appointments for Jake to even consider taking a day off to attend each one. We are very protective of taking unnecessary days off just in case there is a medical emergency that might take him out of the classroom for weeks.

I could ask grandparents or friends to come along, but to be completely truthful that adds a different stress element to the day. We live so minute to minute and many appointment days cause me to be a stressful bundle of nerves. Adding another adult personality into the mix isn’t worth it from a mental sanity perspective. My decision, but for some reason I was still jealous of all these other eye appointment families/cheerleaders.

The appointment itself went well with no further bad news or surgeries needed. He said that the patching we have been fighting Levi to do seems to be helping but we are looking at having to do two hours of patching daily for the next several years. Hearing all of those facts again set me into that dark place I hate to go to.

I was fighting back tears for the second half of the appointment and when I made it to the car I unleashed those bottled up emotions. I cried as we drove home, mourning over the motherhood picture I was yet again having to modify.

I spend a lot of time each week in the car. Our specialist appointments are all an hour away and our therapies are a thirty minute drive each way. I spend every second of the drive listening to worship music and singing at the top of my lungs.

As I drove down the highway, tears streaming down my face, a song came on that I had heard many times before. But this time was different.

The song is called “Nothing Else” by Cody Carnes and the first line was like a reset button for my hurting heart:

I’m caught up in Your presence
I just want to sit here at Your feet
I’m caught up in this holy moment
I never want to leave
Oh, I’m not here for blessings
Jesus, You don’t owe me anything
More than anything that You can do
I just want You
I had such a visual of me sitting at the feet of God with my tears landing on His feet.
I have visualized this scene so many times, and each time before I have been begging God for something. For Malachi’s life to be spared, for Levi’s healing, for answers, for courage.
But this time was different. I just needed a place to land and mourn. I needed a safe place to let the tears flow. And as I entered that throne room of God I felt his presence. I didn’t want to ask Him for anything, but simply craved being in the presence of someone that understood my struggles and my challenges.
Hebrews 4:16 says “Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.”
Why is it that I wait for a total breakdown to enter into God’s presence? Why is it that I wait until I need to beg for miracles before I go into the throne room of God?
Like the song states: I’m not here for blessings. Jesus, you don’t owe me anything.I just want You.
I have been personally challenged to enter with the confidence that Hebrews refers to. I know my God is a good God. I know He longs to hear my fears, disappointments, and desperation. And He longs to offer his grace to me in those moments.
But my pride gets in the way and keeps me from entering into His presence as much as I should. I use it as a last resort rather than a first reaction….like somehow God’s grace for me is already portioned out and might be wasted on situations that are fixable by me.
So I am praying for more throne room moments. I am praying for more confidence. I am praying that when my heart is hurting I can remember that His grace, His free and beautiful grace is more than enough for me.
I am literally going cross eyed- I wish I had a hidden camera on me so you all could laugh with me at the number of times I have had to jerk my head up and delete a string of nonsense my fingers have typed while I slept. The kids are officially asleep so I am heading that way, but thank you for taking the time to read up on my boys.
Much love,
Leah

 

 

 

2 thoughts on “The Throne Room

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