It is Chick-Fil-A story week! This is the week each year that Malachi’s post from 2017 starts to make its rounds on social media again and we get a stream of visitors to the blog. And each year it reminds me of the gift that Malachi is to our world, even though he cannot say a coherent word.
If you have no idea what I am referring to, here is a link to the video:
And yes, I still cry every time I watch it and hear those sweet encounters. We try to meet up with this family at least once a year and Malachi looks forward to seeing his friends each and every time.
Our encounters with people in public are still very diverse with a lot of children asking questions. Levi has become a buffer in these moments, becoming his brothers voice and making sure people acknowledge Malachi. For example, if someone asks Levi how old he is he will respond “Me three, Malachi eight.”
The biggest change is Malachi’s reaction to those conversations with strangers. Back in 2017 he was just four years old and craved any and interaction. But now that he is a wise and mature 8 year old he has a lot of big boy emotions. He hears and understands the words people speak as well as the undertones used (he especially picks up on disgust or disdain) and he frequently gets his feelings hurt. He has also started rolling his eyes when people talk to him like he is a baby which makes me giggle since mom gets a lot of those eye rolls too.
He is very aware when he isn’t being included in something fun and it has been causing some crocodile tears lately. We find ourselves having to be very selective about the environments we take him into, making sure we aren’t creating those opportunities for exclusion. If we are going to be in a place where he can’t do the same things as his peers we spend the few days leading up to the event preparing him for what he might hear and why he might not get to do things.
This has been one of the hardest things to navigate as Malachi’s mom. I just wish that all of you could get to know Malachi and understand how smart and sensitive he is…he really would change your perspective of children with disabilities if you could take the time to get to know a warrior child like him.
That is a huge reason why I continue the blog each week. While you may not ever get to meet Malachi I want to let you get a glimpse of his world and our prayer is that the nuggets of awareness you can gather from here will help change the future interactions you may have with another child with disabilities.
That being said, let’s talk about this week in the Carroll house. Malachi’s seizures have been so calm this week, back down to his regular 6ish a day. They have all been mild to medium and easy to manage.
The theme of the week has been our new puppies. I am running the risk of becoming “that dog lady” who posts more photos of the dogs than her own children. But I also want to give you a snapshot of how the addition of the two have enriched the lives of the boys so much already.
Malachi’s lap has become the best seat in the house for the puppies when they want to rest. The climb right up on his lap and snuggle, and Malachi has been moving his hands to pet them. Seeing the smile on his face has been so special. We will be taking each individual dog out on various adventures, trying to maintain their training in distraction filled environments and this week we successfully did a trip to the horse barn for therapies and a few soccer games.
Levi has enjoyed bossing the dogs around and turning them into the perfect playmates for him. The dogs have been trained to be submissive so they do whatever he tells them to do. The empowerment this has given Levi is comical and dangerous at the same time.
Here is a sweet video for you:
The two pups are brothers but definitely have distinct differences. Tuck has a more slender build with a longer face and shorter ears. His collar is teal. Shiloh is built to be big like his daddy, and has very big ears and lots of saggy wrinkles on his forehead. He has a pink collar now but will have a burgundy one by the end of the week.
We definitely have no regrets adding this chaos into our lives. It keeps Levi entertained and occupied and Malachi is so engaged listening to them run around the house and loves their frequent visits to cuddle or kiss his face. And the added bonus is that both of our neighbors have had bear visits this week but we have not! I think the dogs are keeping the bears from wandering to the front porch, which is the favorite bear hangout in the neighborhood.
I am always challenged each year on this specific week to write something God inspired since we get so many new readers through the Facebook post. It is a task I do not take lightly, as I recognize the opportunity to introduce you to my God.
Confession of a Special Needs Mom: For every moment that makes me smile each day, there is a moment that takes me to a dark place.
This life is such a unique blend of pure joy and heartache. And it swings from one end of the pendulum shockingly fast.
I have been trying to organize closets this week and opened Malachi’s clothes from when he was Levi’s current size. Inside that box was a stack of onesies that can fit a 4 year old. I remember packing that box and saying to myself “I won’t ever need these again!”
But as I opened the box and spotted the stack I had this sinking realization in the pit of my stomach that they would fit Levi perfectly as he is about to outgrow his other special onesies (they keep him from messing with his g-tube). Each time I have laid hands on these onesies in the last week I catch my heart leaning toward mourning. Every time I spot Levi running around in one I can’t help but desire a different life for my sons.
Why weren’t they able to have a chance at typical? Why weren’t we able to have a child that didn’t struggle with cerebral palsy, g-tubes, brain damage, surgeries?
I don’t know that I will ever get to a point where I don’t have these questions swirling in my mind. I don’t think that a wound can ever heal when it is continually ripped back open each day.
And it is incredibly easy to get stuck in this mindset and head down that dark road of bitterness. Those paths to bitterness likely exist in your life too, but with different triggers. It could be an unanswered prayer, a regret, a broken relationship, an unfulfilled dream. When you dwell on those things it is very hard to change your focus to anything else.
But that is where my God comes in. I can get pretty far down my bitterness path without even realizing it, and my arrogance and self-sufficient mindset can keep my on that path longer than I know I should be.
We often fail to recognize that the bitterness road that we choose can become our prison.
So how do we escape it?
We have to borrow the eyes of God.
Our worldly eyes have been trained to look at things as “good” and “bad” in such a black and white way. But God’s eyes perceive so much more than our human ones do. They see the future and they see the muscles we need to grow for what lies ahead. They see our need for perseverance.
I can look back on my life and see the many moments before having Malachi that God was preparing me for something. Those hard trials that I despised in the moment are something I am so grateful for now, as I recognize the bigger picture required stronger muscles.
I know I default to this verse often, but it bears repeating again.
James 1:2-4 “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”
If you want a good devotion this week I encourage you to read that whole chapter (James 1) and see what else God wants you to see in it.
“Consider it”- that is a verb. It is something you have to choose to do. It is not a natural inclination to find joy in your trials. But when you are a child of God you recognize that He is strengthening you through even the hardest moments and preparing you for a task He has chosen specifically for you.
There are days that things like the box of onesies will grieve me. And I am not convinced that those inclinations will ever truly disappear. But when I ask to borrow the eyes of God and He gives me a glimpse at the hand He has had over my life I realize that having the box of onesies is a blessing. It reminds me that God, through Malachi, has prepared me to be a great mom to Levi. God built my muscles and allowed me to be a strong advocate for BOTH of my boys. He allowed me recognize to recognize that “quality of life” is a term that has been polluted by the world.
If you are like me and find yourself often on the bitterness road I challenge you this week to find a way to consider it all joy. Try to view your situation through the eyes of God and get a glimpse of His greater plan for your life.
And if you don’t know God at all, try talking to Him…it might surprise you how eager He is to answer you. Dig into the Bible as it is literally the word of God. If you seek Him you will find Him. And if you have any questions or I can help you in any way please feel free to reach out to me at firstname.lastname@example.org
I am an ordinary woman put in charge of raising some extraordinary children. And while our walks may not look similar I would love to connect with you with my God.