I somehow managed to take a ridiculous amount of photos this week without even realizing it! So I guess I will let the photos drive this week’s update! And not that it really matters, but just as random piece of information- we buy Levi adapted onesies for his g-tube and they only come in black. So although it looks like we never change him I assure you we do! Same with Malachi’s new big boy bibs- we purchased several in his favorite prints.
After I posted the blog late last Sunday night our area got hit with some pretty bad storms. We had tornadoes touch down 20 minutes south of us, 20 minutes west of us, and 20 minutes northwest of us. Thankfully it did not travel near our home. We braced for the impact of the storms down in our basement, trying to get the boys to fall asleep on a king sized mattress we dragged out onto the floor. They were both fueled by the change in routine and thought we were on a grand adventure. Malachi was the most amped up, not falling asleep until after 3:00!
Our most exciting report of the week is summed up best with this photo.
Today was our first day trying out the new therapy tub. We still have a lot of dirt work to do, but we just couldn’t wait any longer to go for a dip! It is a heated therapy pool so we set it at 101 degrees (it was 55 outside) and tried a 30 minute swim. I wish I could have filmed Malachi’s face to share with you all, but I did snap a few pictures.
I haven’t seen him that happy in a very long time. He never stopped smiling. Even when we talk about it now he starts giggling.
Jake and I both had been back and forth this week about whether or not we had made a wise decision in purchasing the pool. It was one of those grand ideas that, when it started to take shape, turned out more involved than we expected. While we did have some major help from a local grant we did pull a chunk of money from savings to help make it happen. And each day as I looked at the pool out the window I said to myself “what were we thinking?!”
But today I watched Malachi transform from a boy with a disability to a 7 year old who could swim independently. Aside from his pure joy (that has lasted all day) his body is already different than when he started out this morning. His tightness caused by his cerebral palsy is so much more relaxed and that was after just 30 minutes! If we can create a more physically comfortable life for Malachi than it is worth it, without a doubt.
Our goal is always to give Malachi the best life he can have in the time he spends with us on earth. This pool is a huge part of that and I can’t wait to see what fun memories we will make as we splash as a family.
Levi hasn’t been around water much, so he was very cautious and wanted to stay in his float. But he loved the water and was very upset when we got out. He has been asking to go back in the pool all evening.
We spent the majority of our week outside, passing the time with walks, bubbles, bike and wagon rides, and games.
Levi is growing by the minute. He is still a skinny little guy but he is getting so tall!
And he never stops eating. It is actually pretty fascinating. We are making HUGE progress with his food intake and we haven’t adjusted his feeding tube schedule at all. He is also drinking thin liquids without showing any signs of aspiration. It would be a dream come true for us to eliminate the need for his feeding tube and go to only feeds by mouth.
He even started brushing his teeth independently this week which is such a big step with his oral sensitivity.
We also let everyone help bake a batch of cookies. Such happy boys!
We also spent a lot of time reading Bible stories and using our imagination in the play room.
Overall it has been another refreshing week for our family. We went on a few drives into town to do a grocery curbside pickup and a curbside Target run but we are still hunkering down and trying our best to avoid germs and people.
My medical tests were scheduled for tomorrow morning but insurance has denied them. We are working on getting it all sorted out but we have yet another delay. I just keep believing that this all will be done in God’s timing. I have a few other unavoidable appointments that I have to go to this week but Jake will be able to stay home with the boys.
I was talking with a friend this week and we were talking about how strange it feels to not see friends throughout the day. And while it does seem foreign to many people right now, I keep flashing back to the various times in my life where my world has been suddenly interrupted. Days when I woke up in my own bed thinking it would be a day like any other but didn’t get to lay back in that same comfy bed for 4-5 months.
But this has been different. There have been no hospital stays, no surgeries, no talks with doctors, no stress. No life or death decisions have to be made. And the biggest change is that everyone else in my circle is experiencing the exact same thing as me! Each time life has whisked me away to a hospital with one of the boys life goes on for everyone else. When I usually return to normalcy I realize that everyone else’s lives haven’t skipped a beat and it always caused me to mourn a bit more. But this time is different. When we all emerge from this quarantine we will all have those fresh eyes as we look at the new world around us.
I think about all of the times in the Bible when a character had a “reset” from God.
Noah and his family emerging from the ark after 40 long days, staring at a world that didn’t look the same.
Jonah exiting the belly of a whale and realizing that the very thing he was trying to run from was still there.
But tonight I want to share the story of Zechariah with you!
The Bible tells us that Zechariah was a priest and his wife’s name was Elizabeth. It tells us in Luke 1:6 “Both of them were righteous in the sight of God, observing all the Lord’s commands and decrees blamelessly.” It sounds a whole lot like the start of the book of Job when I read that line.
The Bible also tells us that they were childless and both very old. One day when Zechariah was burning incense to God in the temple an angel appeared to him and said “Do not be afraid, Zechariah; your prayer has been heard. Your wife Elizabeth will bear you a son and you are to call him John.” He went on to say some amazing things about what John would do in his life in verses 14-17 if you want to read over those verses on your own.
But I want to move on to Zechariah’s response in verse 18: “How can I be sure of this? I am an old man and my wife is well along in years.”
The angel replied “I am Gabriel. I stand in the presence of God, and I have been sent to speak to you and to tell you this good news. And now you will be silent and not able to speak until the day this happens, because you did not believe my words, which will come true at their appointed time.”
Boom. His voice was gone. God had hit that “reset” button and Zechariah would not speak again until after his son John the Baptist was born. John wasn’t even conceived yet!! So it is safe to assume that Zechariah’s reset lasted at least 9 months.
The baby was born and several days later the neighbors and relatives asked what the boy would be named. On a tablet he wrote the words “His name is John.”
The Bible tells us in Luke 1:64 “Immediately his mouth was opened and his tongue set free, and he began to speak, praising God.”
Did you catch that…the first thing Zechariah did after his reset was praise God for all to hear. He didn’t focus on the frustration and discomfort from his time without a voice- he focused on the praiseworthy.
It goes on to tell us that he was filled with the Holy Spirit and began prophesying. The first line of that prophesying starts with: “Praise be to the Lord, the God of Israel, because he has come to his people and redeemed them.”
While our reset may look very different than Zechariah’s, how will we emerge from it? Will we be the same person, or will we allow ourselves to be changed, praising God about all of the things we are expectantly waiting for Him to do?
While resets can often be uncomfortable, they can also be so incredibly refreshing! It is an opportunity to refocus and emerge from it a different person.
Unless you are a Leah Carroll, this may be the only reset opportunity you will have so start to spend time NOW thinking what you want to look like when we come out of this strange time of rest. Start to think about the things you will say when God gives you your “voice” back. Will the first words off your tongue be proclamations of God’s goodness?
I know for me, this period of rest has highlighted a lot of things that need to be changed. The things in my life I assumed I wasn’t doing because I didn’t have the time, I am still not doing. It has caused me to re-evaluate my priorities and drive. It has also highlighted the simple things in my life that truly bring me joy and comfort, and those are things I had taken for granted.
But the biggest hidden blessing in this reset is the opportunity for me to dwell on the small things that God has done in my life. Those are the things that tend to get overlooked, or overshadowed by the big things.
I am in rambling mode. The moral of the story: how is this time of rest changing you? Is it changing you? Do you find yourself drawing closer to God or has the distance from church and routine taken you further from Him? What has this reset revealed to you about your walk with God? I want to challenge each of us to try to do a little self evaluation this week and find/create the many things you wish to praise God for when he returns your voice. What will we be able to shout from the rooftops?