We are wrapping up another week of laughter and tears, calm and chaos. You never quite know what emotions each hour will bring!
We had our first soccer home game this week so we hauled the Wild Raptor for Malachi and the pickup truck for Levi!
The boys both genuinely love going out to the games each week. Levi has started clapping when the crowd claps and Malachi loves the variety of emotions the games bring out in the stands.
Levi had his follow up eye appointment with the surgeon on Monday, and once again I left the appointment and bawled in the parking lot. I have dealt with neurosurgeons, orthopedic surgeons, heart surgeons…lots of big surgeries and diagnoses. But for some reason these eye appointments seem to be my kryptonite. I always leave feeling like such a bad mother.
Levi obviously didn’t cooperate with the eye exam after a very long two hour wait. We have surgically fixed the alignment of his eyes, a byproduct of his brain damage. But he has a secondary issue as well, a lazy eye (thanks genetics), that can’t be surgically corrected. The best treatment is patching the good eye and hoping the weak one will grow stronger. If it doesn’t improve the brain often shuts off vision to the bad eye causing blindness in that eye.
Now that Levi is stronger and much more opinionated he refuses to keep a patch on his face, not to mention any oxygen tubing. Everything gets ripped off in a hurry. When I explained this to the doctor he told me that Levi was likely one of those kids that would just have to be blind in one eye since we aren’t able to patch. He said other parents “just sit with the kid and keep them entertained for the 1-2 hours of patching each day”, which inadvertently made me feel like a bad parent for not being able to successfully do so.
Levi was all over the office during the appointment, trying to open every cabinet drawer and empty it’s contents all over the floor. I felt such judgment from the surgeon and nurses as they watched me chase after him. But they don’t understand that this sweet boy spent the first five months of his life trapped in a hospital bed. Seeing him get into everything he can reach makes my heart leap with joy.
As I left the office I just felt so discouraged. I am so incredibly tired of continually hearing that my boys are broken. I am so tired of discussing bad future outcomes, and things that will “likely” happen. I sat in the car and allowed myself a good 20 minute cry as I mourned over the things I can’t take from them.
We are going to try eye dilating drops in Levi’s good eye with the hopes it will make his weak eye stronger as it tries to focus on things. This will make him sensitive to sunlight and will have to be done every day for likely several years. It really isn’t a good solution either, but we are out of options.
By the time he reaches an age where I can reason with him and explain the patch he will already be too old for it to make a difference.
Switching topics, we found this cool new stroller seat that connects to the back of a wheelchair! I haven’t tried connecting it yet but will see how successful it is later this week.
On Wednesday nights in our youth group we usually end up with 25-35 teens, and Sunday evenings are much lower with maybe 10 kids. We decided we would start switching things up (I know, we are crazy) and have the kids come over to our house for Sunday night Bible study. We spent all weekend prepping the house for the youth, and today I broke out the kitchen gear to prep snacks for them. I felt so…normal. Oddly normal. I used to love to cook, and being able to do so today felt good.
Both of the boys were giddy with excitement as the teens slowly started to fill the house. We ended up with 25 at the house, Malachi clinging on to every word and laugh. We are planning to make this the new Sunday night routine so please pray with us that God protects our home from any potential sickness!
When we built this house we specifically designed the basement for having Bible studies and youth activities in it. We prayed over each room and buried a verse under the foundation that had been chosen for each specific space, and the one we chose for that main area was done with the teens in mind. Since Levi entered the picture and required being on the main floor due to the oxygen concentrator, we decided it was unrealistic to host anything. But having the chance to have the kids over routinely is such a fun new adventure. And it forces me to clean each week haha.
Levi has recently started loving an audience. On Saturday night we met with some church friends and he was showing off his new walking attempts. Here is a silly video:
And another silly video of Levi singing. He has started humming while he plays by himself, and Jake does the exact same thing. It is so sweet to hear his little voice.
Malachi made it to school three days this week but had to be picked up early one of them due to some big seizures while he was there. I usually leave Levi strapped into his car seat while I walk Malachi up to the drop off doors, but on Tuesday he just wasn’t having it. I loaded up Malachi into his chair and carried Levi for the drop off. He was mesmerized, but started to cry when he watched them wheel Malachi away. I tried to explain the process to him, but he wasn’t satisfied until we picked Malachi back up that afternoon.
Levi knows no danger. And this week he mastered opening doors…including the front one. And wouldn’t you know it but ten minutes after he successfully opened the front door for the first time the neighbor texted and said she had just walked up on a momma bear and two cubs out in front of our house. Ahhhh.
We had another young bear stop by a few nights ago and check out the front door. He was much smaller than the others we have been getting!
Danger boy and all these bears are making us a nervous wreck so we have been in baby proofing mode. Well, I guess it is the next level up from there as we are having to prep the house for a Macgyver.
I turned around yesterday and he had crawled up to the table and grabbed two forks banging them on the table like a savage.
Malachi rocked his therapies this week! His work ethic is so special- he wants to give his 100% to everything that he does.
Wednesday’s horseback therapy had to be cut short as the heat just withered all of his energy. We got the horrible news this weekend that the horse he rides passed away very suddenly. I haven’t told him yet, but will be trying to find a way to explain it all to him. He has been riding that horse for many years.
Both of the boys absolutely love feeding therapy each week.
Levi is starting to get more picky with his food and is still choking often on solids. But we will keep practicing!
This week I have been bit big time by the worry bug.
My mind keeps wandering to thoughts that I dare not go toward often…thoughts of Malachi’s life and how it might end. All of these fears prompted by the dozens of children like Malachi in my support groups who have been called into heaven in the last few weeks. This is the time of year that sickness begins to wreak havoc on poor immune systems like Malachi’s.
Will he be taken quietly in his sleep?
Will he pass away during a unstoppable seizure?
Will he go in for a surgery and never make it off the operating room table alive?
Will he outlive Jake and I, which brings a whole new set of fears?
Will he smother himself, something that I could have prevented had I been more watchful?
My mind has wandered towards these horrible thoughts all week. And as much as I try to push them aside, they continue to play on repeat.
I am a self-admitted control freak. And there are so many stinking things in my life that I simply just can’t control. So I have this tendency to try to play out every scenario in my mind with the hopes that I will prepare my heart for what might happen.
But boy, oh boy, worry can suck the energy right out of you. These thoughts exhaust me, and I can feel the weight of them growing heavier on my tired shoulders.
In Psalm 23 there is a verse that says “Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff they comfort me.
I never understood what the shadow of death was until I encountered these thoughts with Malachi. And there isn’t really a better way to describe them other than a “shadow of death” that lingers in my thoughts.
As a child of God, I know better than to worry…but I still worry.
Even as the worry sucks my breath away I feel conviction for letting it fester that far. But yet I still let it continue to overtake my thoughts and prayers.
I read a verse this week and it was like God snapped His fingers bringing my attention to something big in it.
1 Peter 5:6-7
6 Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. 7 Cast all your anxiety on him because he cares for you.
Read that intro again: Humble yourself.
I have always seen worry as a weakness, but as I read this verse I was reminded that worry is also a form of pride.
When we are unwilling and unable to release our worries to God we are assuming that they are something that we can handle on our own.
God wants to turn our stubbornness into a heart of submission…a heart that reaches for the rod and the staff for comfort, trusting that the Shepherd knows the path we are about to embark upon.
Pride has always been my #1 sin, although many other sins spawn from that pride. And now I see that my worry is no exception!
God doesn’t love me any less for this weakness. But He longs to take the burden from me that I insist on continually placing on my own shoulders.
So this week I will try to interrupt my worry tinged thoughts and replace them with prayers that God will uproot my pride. I pray that I learn to speak AND BELIEVE that God’s future plans for Malachi are perfectly in line with the will of God.
So here I am, again, casting my cares on Him. May God help me control my hand this week and not reel them in again!
5 thoughts on “Shadow of Death”
Oh it is so tough to not give into fears and what ifs. Especially with the HIE group getting hit with so many losses. But you spoke wisdom, God is indeed big enough for this, if we humble ourselves and confess our fears and pride. It’s a daily part of sanctification and sometimes more minute by minute, but he is GOOD in this.
Also, long appointments with kids who don’t want to be messed with are the bane of my existence. Solidarity, mama.
Sending you prayers & hugs because I care! May your family be blessed with strength to continue doing the awesome work you’re doing. Your boys are beautiful & amazing, you’re a wonderful Momma.
Love, hugs, blessings, & hope…keep the faith 💜🤗🙏🏻
So sorry for your rough week. If you want to patch him, what about attaching a patch to a helmet—something that he can’t get off his head? I’m envisioning a “patch” that actually starts way back on his head, attached to the helmet, and when you put his helmet on his eye is covered? Good luck mama. I’m sorry for the guys that keep on coming.
THANKS FOR SHARING
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I’m sorry about the horse, praying that peace has came about in the days since.
I’m a natural worrier as well, love the verse that’s spoken to you…I lean on Proverbs 3:5-6.