Summertime is truly magical for our family. For those of you who don’t know, Jake is a teacher at our local high school so for the months of June and July we are able to spend some quality time together as a family. Having Jake home to help with the boys makes life so much more manageable. I am already mourning in my heart over the idea that he goes back to school in just three weeks.
Levi is a little bit of curiosity mixed with a whole batch of adventure. Everything that he does is slightly dangerous. The kid craves adrenaline, and keeping up with him is exhausting. I decided this week to take a photo of each of the strange places I would find Levi (as I was walking over to rescue/chastise him of course).
Levi and Malachi are still such best friends. Levi doesn’t know that Malachi is “different” by the world’s standards and mimics everything he does. He will dig out one of Malachi’s bibs from the laundry basket and hold it up around his neck so he can look just like his big brother. He has even been mimicking Malachi’s sign language, learning from big bro just like he should.
He will go over to Malachi several times a day and rest his head next to Malachi’s, leaning in to kiss him on the mouth. He will climb into the chair with Malachi and hold his hand, just as still as can be, clearly overjoyed to see Malachi smile at his presence. The bond between them is continuing to grow strong.
Here is a silly video for you:
When Malachi gets tired he tends to let his head fall to the left. When this happens Jake or I will go over and straighten it back up for him. Levi has started doing the same thing, using both of his hands to hoist up his brothers head back into the center of the seat. What a great little brother he is!
Sometimes I wonder if their special bond will create some scenes for us in the future. Levi is aloof to the looks, stares, and whispers that we get now when we go out in public but as feisty as Levi already is I can only assume he will be protective of Malachi in the future when his awareness for these things grows stronger.
On Monday I took both the boys on a quick outing to grab a few things. The side of town I went to just had a Wal-mart that would suit my needs so I put Malachi in his wheelchair, strapped Levi in the Ergo baby carrier on me, and grabbed a cart. We try to avoid Wal-mart as it tends to always yield a story of some sort by the time we are finished but that day I decided to tackle it.
We made it all the way to the checkout and got in line behind a mom and her two children. The boy was six years old and the girl was nine. They were busy helping their mom put things on the conveyor belt and didn’t notice my crew right away, but I felt in my gut a conversation was about to take place. You learn how to read those situations, knowing whether the family will be open to a conversation or would rather not communicate about uncomfortable things.
The boy noticed Malachi first, stopping dead in his tracks to process what he was looking at. For many children wheelchairs are a foreign concept, especially child sized colorful ones that look like Malachi’s. His eyes moved from the chair to the braces on his legs, then finally up to Malachi. The wheels in his little head were processing and he couldn’t seem to fit Malachi into a known category.
Then the little girl turned around and caught a look at Malachi. I try to give kids time to process before I break the silence.She, too, studied every feature then started to walk over with wide eyes. She walked right past Malachi and leaned in really close to me and said with urgency: “There is something wrong with THAT BOY!” and pointed at my son. The look on her face was so intense, as if she was worried that maybe I didn’t know that the child I was pushing around was different.
Her comment genuinely made me smile, as her tone was one of true concern- not spite. I explained to her that Malachi is a little bit different than her, but in a lot of ways he is very much like her and her brother. I told them about all the things Malachi COULD do like play on a soccer team, swim in the pool without his mom helping, ride horses. Malachi beamed with pride and giggled at each of his many talents that I mentioned and seeing him react that way seemed to put them a bit more at ease.
Then the girl asked me if Malachi had a disease. That question sounds much more offensive than it really is when you hear it coming from a little child’s mouth. They want to understand why Malachi is the way that he is. So I explained how little Malachi was when he was born and how his brain is just a bit different than ours. I explained how he couldn’t see and she continued to hold her her fingers and ask him how many fingers she was holding up, clearly not believing me haha. Malachi liked the game and kept laughing at her until she finally was satisfied that I had told her the truth.
Parents in these moments are even more entertaining to me as you can literally see them cringe with each offensively worded question. When they hear my responses to those questions they usually lighten up a bit, recognizing that I am okay with their harsh wording.
I see those moments as a chance to create a new box in the mind of children. I want to answer as many questions as I can so the next time they see a Malachi they have a box in their mind that they can fit that child into. I want to give them a chance to get all the gawking, staring, and questioning out of their system so the next time they will see a boy or girl that CAN instead of a broken child.
I hope that I can teach that same grace to Levi as he grows older, but based on his personality now and his unconditional love for Malachi I can’t imagine him sitting quietly and hearing those things said about his brother. Oh the lessons Levi will get to learn at such a young age….lessons even adults have yet to master.
Every night Jake and I have four shifts to divvy out with one another: the Levi bedtime shift, the Malachi bedtime shift, the Malachi night shift, and the morning shift. This summer we have paired the Levi bedtime shift (9:30p) with the Malachi night shift (4:30-6:30am). The one who does the Malachi bedtime shift (11:30-12:00) gets to sleep in until a boy wakes up for the day (usually about 7:30). By doing it this way we are each getting at least 7 hours of sleep each night. When Jake is back at work I run on about 5 hours a night which is a challenge.
All that math to say, I have been taking the Malachi bedtime shift this week. We stay out in the living room and watch Little House on the Prairie and sneak spoonfuls of peanut butter ice cream. It is our favorite time of the day because it is just us and we can share secrets (like the peanut butter ice cream). He giggles and belly laughs and cuddles in so close to me. Each night we say prayers to Jesus and talk about the angels that God has sent to guard him each day. It is such a special time for both of us.
I can’t adequately explain Malachi’s soul to you all. He is so wise, so thoughtful, and so smart. We have been having lots of conversations about God lately. I never want Malachi to feel “broken” or anything less than perfect so I have always refrained from praying out loud with him for his healing, although Jake and I certainly pray for that daily. But the older Malachi gets the more I feel like I can have those conversations with him.
We talked about the girl at the grocery store and how silly she was to say the things that she said. I explained that even though he can’t walk like that little girl, that one day he will…I explained to him that he is not broken, he is just not made whole yet. I talked with him about how one day God will give him legs so he can run like the Flash. He smiled so big at that one. I explained that he might get those new legs on earth, but he also might have to wait until he gets to heaven!
Malachi and I have been praying out loud each night for his new legs and his brain to be made whole. We also pray for a miracle for baby Levi’s brain. Malachi may not speak, but I am convinced that he loves God in a way that brings Him so much glory.
Levi has been learning things by the minute, which is exciting to watch. He watches every move we make and tries to repeat it, like dad with the remote control…
Malachi with the hulk hands…
He has also been working on eating different foods and this week we have turned a corner! Y’all wouldn’t believe the things he has packed away. Pizza, turkey, PBJ sandwiches, bagels…
He still chokes frequently and sometimes his oral sensitivity is so bad that the food makes him vomit, but he is making so much progress. He is even drinking from a straw!
Today at church he got to play with his buddy, Joy.
I struggle with a lot of emotions each and every day. One of the main themes that keeps creeping back into my day is the emotion of fear.
Fear creeps in when I watch Levi crawl across the floor instead of walking like other kids his age.
Fear creeps in each time Malachi has a seizure, knowing that the chances of one taking his life are high.
Fear creeps in when I replay the words of doctors telling me they think Levi’s brain damage is worse than they first predicted. Or when therapists mention orthotics for him. Or when specialist blame things on his “low tone”, an indicator of cerebral palsy.
Fear creeps in when I hear statistics about medically complex children like Malachi and their life expectancies. Or the alarmingly high rate of abuse of non-verbal, non-mobile special needs children like him. This world can be an evil place.
I have moment where I fear death. Jake dying. Me dying. Levi dying. Malachi dying.
So. Much. Fear.
This week I have been processing that emotion and trying to figure out if fear is from God. I know that these exact moments of fear that I struggle with are most definitely NOT from God- they are attacks on my mind and heart as Satan is attempting to sow seeds of doubt in me.
But is all fear bad? I thought about all the times people encountered angels in the Bible and the angels commanded them to “Fear Not!” As I studied those scriptures I came to the conclusion that the fear in those moments wasn’t a bad fear, it was a healthy respectful fear/awe of something so spiritually powerful. And the fear of the Lord is most definitely Biblical and God honoring.
I remembered a scripture that I learned as a child about God not giving us a spirit of fear: 2 Timothy 1:7 “For God has not given us a spirit of fear, but one of power, love, and sound judgment.”
The more I studied that one I noted that other translations use words like “timidity” or “cowardice”. I wouldn’t categorize the fears I have right now as those adjectives so they didn’t answer my question.
So is fear from God? I still haven’t grappled with the question enough to answer it for you. I am still munching on and studying that one.
But nevertheless, fear exists in my life. And it likely will creep it’s way into your life. And it may grow bigger and bigger as life gets more complex, as it seems to have done in mine.
As I read the Bible this week I stumbled across a story I haven’t read in a long time from 2 Kings 6. The main character is Elisha, a prophet of God. The king of Aram is trying to attack the Israelite army and Elisha keeps thwarting their attacks by telling the king of Israel which places to avoid.
When the king of Aram finds out that Elisha’s prophecies are keeping his army from success, he send the army to capture him.
15 When the servant of the man of God got up and went out early the next morning, an army with horses and chariots had surrounded the city. “Oh no, my lord! What shall we do?” the servant asked.
16 “Don’t be afraid,” the prophet answered. “Those who are with us are more than those who are with them.”
17 And Elisha prayed, “Open his eyes, Lord, so that he may see.” Then the Lord opened the servant’s eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha.
As I read this story I found myself relating more with the servant rather than the prophet. His fear was understandable as he stared at the reality of the army in front of him, and he cried out “Oh no, my lord! What shall we do?”
But this story has reminded me to believe that for every big battle we see looming in front of us, God has already prepared an angel army to help us fight it. As I read this story I reflected back to how many times I have allowed myself to focus and fret on the seen instead of finding comfort in the unseen.
My new prayer this week will come from the words of Elisha as he prayed “Open his eyes, Lord, so that he may see.”
I pray that in my moments of fearfulness that I will remember to ask God to open my eyes so that I may see the angel armies God has already send to surround my boys and their big battles. I pray that God would continue to replace my fear with faith.
And I pray that my faith continues to remain bigger than my fears.