As the number of cases near our small community increase, I have felt my anxiousness also increase. As of today there are no confirmed cases in our small town.
But with social distancing being in effect it seems all of the towns around us are flocking to our area to go hiking, boating, sightseeing, and picnicking. Our roads have been packed with visitors so I can’t imagine we will remain virus free as a community for long.
The boys have been officially on lock down for 16 days and we have zero intentions of taking them out of the house for several more weeks. Jake and I have each left 2-3 times this week for various necessary reasons but have only had to go out in “public” with others one time each. We have been trying some different methods for still connecting virtually with our youth group and I have been doing as many secretarial tasks from home as possible since the office is closed.
He is eating like a teenager, which is so great! He eats something off our plate every meal and while we have had a few gags and vomits for the most part he has managed the food better than ever before. It is so much easier to keep the boys on their tube feeding schedules while we are home.
Here he is wearing a pair of daddy’s underwear on his head.
Levi successfully pooped in his potty this week, much to our amazement! We are still trying to figure out how to navigate potty training with his tummy tube. We keep him in onesies to keep him from pulling on the tubing/tube so it isn’t a quick and easy process to plop him on the toilet. And I can’t let him walk around naked because he will have access to the tube and yank on it. I am hoping as he gets older he will be able to understand not to touch the tube and I can dress him in a simple shirt and pants.
We tried taking the boys for a drive to just get them out of the house but when Levi realized he wasn’t actually going to be able to get out of the car he lost his mind and screamed so much he couldn’t catch his breath. He ended up choking on his saliva during a screaming episode and threw up so we abandoned our drive and went back home. That is the last time we will attempt that for awhile!
We had some rain this week but as soon as that lightened up we did a little Wild Raptor riding in the driveway. Malachi was so excited and didn’t want to quit.
Malachi has been having some really good days lately. He is sleeping 6-7 hours each night, which is excellent for him and his seizures have lessened tremendously now that he isn’t moving from place to place so often. He even took a nap this week which is so rare. Most importantly, he has been really really happy having the whole family home all day.
We made some progress on Malachi’s therapy pool this week! The hole is ready and we are hoping they will be able to deliver it and put it in the ground by Friday. We won’t fill it up right away, but even these baby steps are so exciting!
The boys both really loved the small “tractor” that moved the dirt. The men were hammering poles into the ground so Levi ran in to get his hammer and nail toy as well.
We have been reading a lot of books this week, one of Malachi’s favorite things to do. We found a video of a guy reading one of his favorite Grover books so I filmed a bit so you could enjoy it with him.
We also broke down and purchased Disney Plus for Malachi and so far (crossing my fingers) it is streaming pretty well on our poor internet connection. Watching a new movie each day is something he looks forward to when he wakes up!
Walking confidently with God isn’t always an easy thing. I have had several “Peter walking on water” moments this week. I have declared and stepped out in faith, but I will readily admit I have looked down at the water a few too many times and not kept my eyes on Christ. It seems like each day I have to remind myself that while our world is spinning out of control right now, God is still in control.
I have been struggling tremendously with anxiety this week. Several states around us have been posting protocols should there be a ventilator shortage, and people with disabilities are being placed on the low priority end of the lists. I don’t think that Malachi or Levi would intentionally be denied or discriminated against unless it was absolutely necessary; but the idea that they are having meetings and listing which lives are devalued over others hurts my heart in an unexplainable way. These are such unprecedented times that we are in.
I am always very open and personal on this blog, and while I have hesitated about a dozen times about sharing this with you I feel led to as it has been a faith shaker for me this week. But I am going to respectfully ask that you allow me to offer updates on this situation and not ask for more details throughout the week(s).
Last weekend I started having a little trouble catching my breath. I tried to brush it off but the breathing spells continued to come and go to the point where I considered a trip to the emergency room. Every time I weighed the pros and cons I just couldn’t justify going to the ER. The risk to my boys was just too high so I continued to try to convince myself it wasn’t a big deal and would go away.
Unfortunately it didn’t go away and I started to worry that I had developed another blood clot that had traveled, possibly causing a pulmonary embolism. The statistics for an untreated PE are not good with 1 in 3 untreated PEs leading to death. I knew that I needed to go in but was an emotional basket case as I processed how to do so without exposing myself to the virus.
God worked for me and opened doors, getting me in to see a doctor who was able to write for an outpatient CTA scan. I still had to go to the hospital for the test, but instead of entering through the ER I was able to go to the main building which is a little more protected from the active virus cases floating in and out. I will spare you the boring details of the many protocols I took to make sure that I was doing everything in my power to protect my family.
My bloodwork came back great and the lung scan showed no clots, thank the Lord! But there were some abnormalities on my EKG that will need to be investigated a bit further this week. Again, please don’t text or call asking for updates- it is still a stressful situation for me and one I am not ready to have discussions about.
If you know anything about our story, I am sure you can imagine how difficult the decision to go to the hospital was for me. I literally worked out statistics in my head, trying to decide if potentially passing away at home from a PE rather than risking catching the virus in the ER was a better option. I know that sounds so irrational but a momma mind under stress can do some crazy things.
I spent hours in the closet crying, trying to figure out what to do. Jake and I talked about quarantine plans should I be hospitalized. The stress of the situation absolutely consumed me and put me in a dark place.
One night I was having another breathing spell and was trying hard to distract myself from it. I opened my Bible and began to read Psalm 91 and seriously thought I was hallucinating…the scripture was literally what I needed to hear from God. The next morning I doubted again that the words were THAT spot on for my situation so I read it again…and again…and again.
Take a minute to read these words:
Whoever dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
I will say of the Lord, “He is my refuge and my fortress, my God, in whom I trust.”
Surely he will save you from the fowler’s snare
and from the deadly pestilence.
He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.
You will not fear the terror of night,
nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
You will only observe with your eyes
and see the punishment of the wicked.
If you say, “The Lord is my refuge,” and you make the Most High your dwelling,
no harm will overtake you, no disaster will come near your tent.
For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone.
You will tread on the lion and the cobra; you will trample the great lion and the serpent.
“Because he loves me,” says the Lord, “I will rescue him; I will protect him, for he acknowledges my name.
He will call on me, and I will answer him;
I will be with him in trouble, I will deliver him and honor him. With long life I will satisfy him and show him my salvation.”
These verses exude a confidence in Christ that I found myself lacking. It was a boldness I remembered seeing when Jesus approached the lepers- he did so without fear and without hesitation.
As I drove to the hospital I continued to replay these words over and over again in my head, praying that God would send his angels to cover me and that He would keep all virus germs from coming near my tent.
But being transparent here…confidence in Christ is SO HARD! It is so unnatural. It is one of those concepts that is great in theory, but when the moment comes to put that theory into action you have doubts. Like Peter, you are tempted to look down and look at the lurking danger around you rather than focusing on Christ.
It is in these hard moments that I see God yet again refining my faith. There are still pieces of doubt and control in me that need to be removed- they keep me from fully committing to a constant pursuit of (and trust in) God.
Please keep us in your prayers this week as we navigate a world of germs. Jake will be starting his virtual teaching this week but will have to go to his classroom to work on some things. I will have to enter the outpatient hospital setting for more tests. We will both have opportunities for contamination so we are asking that you pray protection over our family, and particularly our boys.