Let’s start with the highlight of our week: Malachi’s new Wild Raptor:
On Monday morning Malachi met with the robotics and mechatronics team that adapted and designed his special Christmas gift. They truly went above and beyond what we expected, not only making it remotely controlled but also adding a speaker, lights all around the bottom, and a dinosaur theme with a working dino head that he can work with his foot to roar. They put so much effort and time into making it perfect for him!
After the last sensory overload experience I decided to tell Malachi as many details as possible so he wouldn’t get overwhelmed. We watched videos of other “Wild Thing” cars so he could get used to the noise and made it the topic of conversation as much as possible.
When we got there and I asked him if he wanted to ride in it he let out a ROAR and was definitely excited to try it out. He made it a minute or two on his test drives and the overload was too much and he started to get emotional. But even though he was crying he was signing for “more”. It was like he really wanted to ride it but his body wasn’t agreeing.
We took it to the church later that afternoon and gave him is recordable switch programming one button to say “Stop Please” and the other button to say “More Wild Raptor Please”. He felt a sense of control and after 5 minutes we took away the switch and he was totally fine, giggling like a wild man.
Here is a video for you:
He LOVES it! He wants to ride it every day, which we will definitely be able to do when it warms up. But for now we have to stick to sneaking over to the church gym when it is not in use to get some hours logged.
The local news covered the story and did a great job! I have posted the video on my Facebook page if you would like to check it out.
Our week to a turn towards chaos on Wednesday when both of the boys woke up coughing. My heart sank when I heard Malachi hack, then again when Levi woke up doing the same thing. As you already know, sickness is tough on both of our warriors and the constant lingering fear of a hospital stay is always present. We tucked ourselves into the house for the rest of the week which has it’s pros and cons.
One of the biggest pros was that we got to justify canceling all of our appointments for the second half of the week, including Levi’s hospital stay for a sleep study on Thursday. Ahhh shux (hope you read that sarcastically). And “unfortunately” they are booked until March so we will have to wait another three months to try again. Oops. 😉
But the cons nearly outweigh the pros as colds lead to sleepless nights and lots of vomiting for both boys, as they both don’t know what else to do with congestion but vomit it out. Levi is throwing up about 18 times a day right now and that is much better than the last few days. Really being home is the only option- we need to have access to mops, changes of clothes, and the bath tub.
We are on day 5 and still not out of the woods yet. We are keeping a close watch on their temps; that is typically the first indication of a secondary infection like pneumonia so please keep them in your prayers.
We were able to cram in some busy days on Monday and Tuesday before the sickness hit with several appointments. Malachi also got fitted for his new AFO (leg braces)- we went with Superman themed ones this go around. We will head back to Vanderbilt on January 2nd to see the surgeon for a follow up and we are hoping he will be cleared to take the casts off and go into braces full time.
Levi never lets me mess with his mouth but I happened to be able to snap a pic this week of two of his four teeth. He was mad at me because I made him try some blackberry jelly.
Christmas…oh Christmas. Jake and I were laughing a few minutes ago reminiscing about the last few years and the adventures Christmas day has held. Last year we were in a hotel room in Cincinnati trying to stay close to Levi in the NICU. It is incredible to me the details I remember from that day. I hope that time will fade those for me. But the highlight of that day was getting a call from the Ronald McDonald House saying they had an opening. It would become our home for the next 4 months.
The year before that we had sold our home with the dream of building Malachi a handicap accessible one. We were vagabonds for the time being until our rental opened up, living with relatives for a few weeks in Ohio then living in an RV “down by the river” literally. We laughed at the comedy in that little RV, trying to make life with a boy in a wheelchair work in there.
Needless to say, we are thrilled and aware of how blessed we are to spend this Christmas at home together. I almost hesitate typing that as we continue to fight sickness, but maybe proclaiming a stress free Christmas will make it so.
Here are a few more pics from last week’s debut as horse and donkey in the church nativity:
Spiritually speaking, I have been alllllllll over the Bible this week. Jake is off through the holidays and when that happens we are each able to carve out some solid devotional time. I study my Bible every week when I am preparing lessons for the youth and children, but devotional time “for me” is also so important and necessary and something I often don’t get enough of.
This week the verse that is playing on repeat is Genesis 50:20 “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” I think I have talked about this one recently, but this week it has been pressing on my heart in so many ways.
This sentence comes out of the mouth of Joseph, who had endured some horrible life experiences leading up to this moment. His testimony is a beautiful one that has always been an encouragement to me when I am feeling betrayed, alone, forgotten…it hits so many emotions that I can relate with! If you want a devotional to dig into, the Joseph story is always a good one; it starts in Genesis 37. If you aren’t a big Bible reader the book “Detours” by Tony Evans is a thought provoking study we just completed in our Sunday School class.
But there is something in here that my mind keeps drawing to.
“You intended to harm me…” We live in a fallen and ugly world. While our mouths speak love and compassion our hearts and minds often do very different things.
I have been thinking a lot this week about the past. About all the times I can look back at and see intentional efforts to harm me…my reputation, my self confidence, my walk with the Lord, my relationships with others. My past, as I am sure yours may be as well, is littered with people who have tried to make me feel “less than”.
When I look back at those early years I see that they had success at making me believe that lie. But when those intentional attacks hit me these days my take on it is so different…
“…but God intended it for good.” When I look back at those past hurts I see how beautifully God orchestrated them into blessings. And through them my walk with God grew stronger and more concrete as I watched His providence reign again and again.
Now when those intentional harms come at me I don’t panic like I used to as I know that God can take even the ugly and create something beautiful from it.
I don’t know who might be the focus of your “You intended to harm me…” moment. It might be a family member, it might be a coworker, it might be a friend, it might be a stranger. But choose that believe that through that attack God will intend it for good. Give it over to Him and allow Him to create a masterpiece. God can re-direct ANYTHING to glorify Him. Do you trust Him to do that?
Please continue to pray for my boys this week, that we breeze through the rest of this sickness without complications.
We pray that your Christmas is full of God moments and reminders of how much He loves you.
Merry Christmas friends,