Another busy week in the Carroll house. Three high school soccer games, a youth group hike, Malachi’s soccer game, oxygen delivery, physical therapy, feeding therapy, and horse therapy. And my new office job has been going great!
Not a whole lot of Levi updates for this post. We are still patching in preparation for our eye appointment next week. And Levi is all about cups these days so we have been letting him play with a sippy cup at mealtimes. One day soon we will try adding something into the cup! Liquids are still an unknown for him so we have to make sure that he can protect his airway from thin liquids.
As you already know, Malachi is in a CDC (Comprehensive Developmental Classroom) setting at his school. During his IEP meeting a few weeks ago we decided to start working him into the “inclusion setting” for a little while each day. That means that he leaves the CDC with the nurse and goes into a typical kindergarten class for a bit.
This week was his first week with his new classmates and the regular teacher (who happens to be a friend of ours) asked me to come in and speak to the kids about Malachi’s differences. They were all so attentive as I explained that Malachi’s brain doesn’t talk to his legs and tell them to move. I purposefully didn’t spend a lot of time telling them about the things that Malachi CAN’T do but instead focused on the things he CAN do. I really want them to see his ability instead of his disability.
Malachi was so excited to talk to his classmates and readily showed them his communication signs when I asked him to. They had the chance to ask questions and none of them seemed to be nervous around him. He was thrilled to have the audience and loved hearing me talk about him. He is a compliment hog.
I am all about awareness when it comes to children with disabilities. It is so important that we, as Malachi’s parents, allow people to get to know him so that maybe it will impact the way they treat strangers like Malachi out in public.
Malachi has been so strong lately. He has been sitting up straight and tall with sudden bursts of strength and we always try to make a huge deal out of it to encourage him. I was able to catch his silliness on video for you:
Foolishly I keep continuing to believe that one day I will actually get a good family photo of all four of us. A friend of ours was doing short 20 minute photo sessions and I thought we would give it a try. She also has a daughter with special needs so I knew she would be up for the challenge. I meticulously planned it all out, ironing tiny baby clothes and even going as far as blow drying and hair spraying Malachi’s hair, much to his delight. Levi decided he didn’t want to nap that day and as we inched closer to the appointment time I had a suspicion this wouldn’t go well.
We got there a few minutes early and each tackled dressing a boy. It was important to me that Levi not have his oxygen on for the pictures so at the last second we peeled it off his face. About 6 minutes in we were seated on hay bales and Malachi realized he was awfully close to Levi….close enough to head butt him. He flung his little body at his brother and BOOM they hit heads. Levi started to cry, much to Malachi’s delight. I was able to calm Levi down slightly so back to the hay bales we went, but Malachi had figured out a way to make Levi cry and wanted to do it again. Little stinker.
The head butting attempts continued, Malachi determined to make Levi cry again. Oh, the brotherly love. Within a few more minutes exhausted Levi was hysterically crying causing me to run for the oxygen. At that point I was saturated in my own stress sweat, feeling anything but beautiful.
We haven’t gotten the pictures back yet but be assured there will be a few with Malachi’s mischievous smile. And a few with Levi’s tears. And probably a few with a tired eyed and stress sweating Leah.
I have such a hard time managing disappointment. All the preparation for that 20 minute photo shoot and it definitely didn’t go like I had hoped. I was genuinely mad and sad as we drove away. It was one of those moments where I caught myself saying “Why can’t I get decent family photos like everyone else? Why can’t we be normal?”
Since we had driven 30 minutes for the photos and were all dressed up we decided to go out to eat. What an adventure that proved to be! Malachi was still fueled by the fact that he made brother cry and with a sudden and random burst of strength, started throwing his crayons. Literally throwing them- he has never done that before. We were actually impressed more than angry. At the same time, Levi was on a rampage trying to grab my full cup and tearing the menu. I had my arm raised in mid air with a buttered piece of bread and Levi knocked that sucker right out of my hands and onto the floor.
Jake and I couldn’t help but laugh, as were the people around us watching our “quiet family dinner”. We finally waved the white flag and headed home for the night. As I walked out to the car I was still a little bitter about how things had played out when I noticed something squishy on the bottom of my boots. Yep- you guessed it- I had stepped on the buttered bread, squishing it disgustingly into the many crevices in my shoe tread. I threw up my hands and said “SERIOUSLY!” and looked for something to scrape that gooey goodness off with. Then my eye caught a random crayon stuck in the bottom of Malachi’s wheelchair from his throwing rampage.
I was able to use the crayon to scrape off the buttered bread. Makin’ lemonade out of lemons I guess haha.
These boys. They are WILD! I have been trying to teach them about being gentle with each other, as they both could use the lesson. Each day I have been putting them both on my lap so they can be within arms reach of one another. So far we have had some pretty epic fails. I took some photos and a video this week to share with you.
Here is the video:
I have had several people ask about our bear situation. I am pleased to update that while we have seen about a dozen bears on our road in the last few months, they are no longer hanging out on the front porch! And the route that they come and go in our backyard is overgrown which is a good sign the path hasn’t been used lately. They have been spending some time at the neighbors house so we are still very cautious when we come and go after dark.
I had the privilege of speaking in a women’s Bible study this week. God had placed scripture on my heart to talk about but I ended up not even talking about the part that I really wanted to focus on. So I guess I will share that with you all.
The prophet Elijah is on the run from the queen who is out to kill him. After the angel incident I shared with you last week, he finds a cave to hide in and starts lamenting to God about how he wished he would just die. That’s where I will start:
1 Kings 19:11-13
11 So He (God) said, “Go forth and stand on the mountain before the Lord.” And behold, the Lord was passing by! And a great and strong wind was rending the mountains and breaking in pieces the rocks before the Lord; but the Lord was not in the wind. And after the wind an earthquake, but the Lord was not in the earthquake. 12 After the earthquake a fire, but the Lord was not in the fire; and after the fire a sound of a gentle blowing. 13 When Elijah heard it, he wrapped his face in his mantle and went out and stood in the entrance of the cave. And behold, a voice came to him and said, “What are you doing here, Elijah?”
I have been thinking about these verses for several weeks now, trying to relate them to life. While I have yet to officially grasp what God wants me to take from this, I have come up with a few conclusions…
God speaks in whispers. So many times we want to confidently hear from the Lord. But we don’t take time to listen for the whispers. In fact, anytime I have truly heard from God it has been in moments of silence. The night Malachi was born I was laying on my bed in pain and I heard “Get up and go” as my feet hit the floor. I knew that moment was God.
Time and time again I have heard from God in moments of quiet.
Do I seek Him enough in my quiet moments? I find myself “praying without ceasing” throughout my day as I speak my thoughts, frustrations, worries to God. But how often to I stop and listen for God to speak back?
Another thing that keeps striking me about this particular scripture is our habit to look for God when things are chaotic…to look for Him in the earthquakes, the fires, the mountain breaking wind. But we often forget to look for Him in the gentle wind moments of our lives. We forget about how constant God is, and how He tells us He will never leave us or forsake us.
We mistakenly see Him as a presence that comes and goes based on how our lives are going. We forget that God lives within us and is present in all circumstances.
This week I will be focusing on finding God in the quietness. I will take those rare moments of gentle breezes in my day to acknowledege Him. And listen to what He has to say.
I realize that some of you may have never had that type of encounter with God so I feel led to explain what I mean when I say “listen to God.” Hearing the actual voice of God is not what I hear…but God places words, commands, and promptings on my heart and mind. And when I hear them I KNOW without a shadow of a doubt that those thoughts are not my own.
My prayer this week is that you encounter God.
Please pray for our family as we are coming up on some pretty intense days. Malachi’s first surgery (g-tube) is on October 29th and his hip/feet surgery is on November 20th. We will find out more about Levi’s eye surgery when we see the doctor next week. Pray for guidance and wisdom for Jake and I as we make big decisions on behalf of our boys. And pray that we can all remain healthy through this winter season. Jake, Malachi, and I all got our flu shots this week and we need to pray a hedge of protection specifically over Levi.