May His Face Shine

I can’t even put into words how much Malachi has improved cognitively over the last year. His brain damage was so extensive at birth that we were told not to expect much out of him, but he continues to amaze us!

It has been such a long journey, but seeing those tiny little improvements make this path such an exciting one. It is dangerously easy to underestimate him and not give him the chance to learn new things so it really does take a conscious effort on the part of Jake and I…something we aren’t always on top of. One of the new things we have been trying to do is present Malachi with choices between two things. We will present a book and a puzzle and let him dictate which one he will play with…and he is VERY opinionated about his preference.

So puzzles have been the toy of the week! Every time we present one as an option he chooses the puzzle. We have several that make sounds when you put the correct piece in…

All of those movements were his own! I will hold his arm to keep him from doing any big movements, which his brain is often telling him to do.

The other area that we are seeing big improvements in is his receptive language. It used to take Malachi other 30 seconds to follow through with a request from us. His response time is almost typical now! This is HUGE!

And you can just see the pride written all over his face.

Another exciting first from this week came when we were reading a book about animals. I was reading the “lion” page and Malachi said “ROAR”. Not once had I mentioned that word- I had only spoken about the animal, so we got to see him making a connection with some previous knowledge. It made my heart skip a beat!

Jake and I find ourselves continually gravitating to thoughts about Malachi’s future, particularly concerning his education. In the state of Tennessee Malachi could have started a developmental preschool on his 3rd birthday. Obviously we refrained from enrolling him, but have started to think about next school year. There are pros and cons to both sides of the decision but after much thought we feel that it is in Malachi’s best interest socially to get him into school (part time) in August. He is a social butterfly and being around other children brings him more joy that you can imagine.

This week we did a drop in visit to the school he will be attending, and I thought Malachi’s head was going to explode with excitement. I typically have to recline his wheelchair pretty significantly to help with his head control, but that little stinker sat straight up at 90 degrees the entire visit. He just couldn’t understand how there were kid voices all around him!

This whole concept is actually very hard for Jake and I, but we keep having to remind ourselves that this decision is for Malachi’s best interest and not our own.

Let’s just take a minute and look at this cute (and wide open yayyyy) hand…

 

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When we were on our adventure in Atlanta we had a few interesting things happen. The first one happened about an hour and half into the drive as we stopped at a Cracker Barrel to get some lunch.

As I have shared with you all before, Malachi turns heads when we are out and about. I like to think it is because he is so darn cute but in reality it probably has more to do with his bright green wheelchair and that fact that there is such a tiny boy in it.

When we wheel him into a public place, it is inevitable that people will turn and stare. It isn’t always in a negative way, but more a curiosity. As we wheeled him into the dining area of this Cracker Barrel we had a very odd encounter as the WHOLE room fell silent and almost every head turned to look. It remained silent for at least ten seconds as we wheeled to our table in the corner, and I could feel my face turning bright red with embarrassment- something I usually can prevent from happening. I am used to getting stares, but never at this level. It was so incredibly uncomfortable for me. Jake is usually obliviously to the looks, but this time he was also flabbergasted by the reaction on the entire room.

We sat down and pretended like we weren’t being watched but throughout the meal we couldn’t help but feel eyes on us. The table behind us had four elderly individuals, all craning their necks to look at Malachi. When I got him out of his chair they started elbowing one another and pointing saying loudly “She’s getting him out!” Jake was facing me and I could tell from his frequent nods and smiles at people behind me that the same behaviors were taking place out of my sight. Honestly I have never experienced “the stares” that badly.

Despite our attempts to just ignore it, my awkwardness continued to grow as the meal went on. We finished eating and were getting our things together to leave when an elderly lady came over to our table. She said “I just wanted to compliment you on how well behaved your son was during the meal. He waited so patiently for his turn to get a bite and I was so impressed by his good manners.” She didn’t mention a word about his differences…just treated us like he was a typical (yet well behaved) four year old. Her compliment made that lump pop up in my throat as I never expected to receive such a compliment with Malachi.

We are approached often by strangers…and boy do I mean often! I would venture to say that 80% of the comments we get are saturated with underlying pity. Comments like “God bless you for raising a special needs child.”  or  “You must have such a hard life.”  All of these comments are well intentioned and not necessarily offensive, but it was so refreshing for someone to see Malachi as a regular four year old boy and take the time to compliment him.

Special needs parents are always tempted to fall into a pity mindset and Jake and I are determined to not take that route. Malachi is a magnificent kid and we are so blessed God chose us to raise him. What a special, unique person he is. We love when others see him (and us) in that light.

We had another very odd encounter yesterday as we wandered the aisles as Lowe’s. Malachi is still very much obsessed with his daddy. And I am not being dramatic at all…one afternoon this week Jake held him for over an hour straight and set him down to run into the kitchen for a drink. The entire time Jake was in the other room Malachi shouted “Daddy, Daddy, DAAAAADDDDYYYY.” Jokingly I said “Don’t you want Mama?” to which he replied “DAAAAAADDDD”. Little stinker.

So as we pulled into the Lowe’s parking lot Jake decided to strap Malachi into his carrier as opposed to his wheelchair. Malachi loves spending time in his carrier and fits very well in it- it is one designed specifically for special needs children and will carry him up to 60 pounds.

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As we walked through the aisles we passed an older woman who noticed Malachi. We went down an aisle and in my peripheral vision I could see this woman turn her cart around to follow us. She pushed her cart up to us and said “Put that boy on the floor.” The comment startled me and I thought maybe I misheard her so I said “What was that?” She leaned in a little further, pointed adamantly at Malachi and repeated emphatically “Put that boy on the floor.” Her tone conveyed that she thought we were catering to a lazy little four year old by carrying him instead of making him walk.

I tried very hard to keep my emotions out of my response and calmly said “Ma’am, we would love to be able to put him on the floor and let him walk around, but he will never be able to walk and spends most of his time in his wheelchair. We thought he might like to be carried by his daddy through the store. So yes, we wish desperately we could put him down, but unfortunately that’s possible.”

The conversation quickly dipped into the awkward realm and she visibly felt terrible, which made me feel bad for her. She apologized saying “Oh I’m sorry, I couldn’t tell he was like that.” And after a minute or so of conversation she dismissed herself and moved on.

These experiences remind me of how much power our words can carry. Words can uplift and tear down. They can strengthen and weaken. Words carry remarkable weight, whether they come from strangers or friends. These experiences continue to challenge me to put more effort into what thoughts I allow to become words.

As I look back into my childhood I can ‘t help but flash back to the moments when someone’s words made an impact on me…

  • The time in 3rd grade we were riding in a bus to a field trip destination…the girls were asking the most popular boy in the class to answer questions. I was shy and silently eavesdropping from my bus seat. They asked him “Who is the nicest girl in our class?” and he responded: “Definitely Leah.” I will never forget how that moment made me feel. I had felt so invisible as a child, and hearing these words made me feel seen and understood.
  • Another time in the 5th grade when an adult from church approached me and with tears in his eyes said “I have been praying for you, and you have NO IDEA what great big things God has in store for you.” I will never forget the face of that man as he spoke those words.
  • In the 12th grade I was so excited to share a scrapbook I had made that recapped a mission trip I had just gone on. I brought it to someone that I admired and they responded very casually, “Why don’t you just show me your one favorite picture.” Yes, words can hurt deeply.

As I think about my encounters with others, my hope and prayer is that they leave a lasting impact… one that builds up instead of tearing down. I hope that my words can add value to someone as opposed to taking it away.

Last week I shared with you that Jake and I had chosen verses to be buried under the foundation of each main room of the house. Tonight I want to share with you the verse we chose for Malachi’s bedroom, as well as the other bedroom that we will use for future children.

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 Numbers 6:24-26 ” The Lord bless you, and keep you; the Lord make His face shine on you, and be gracious to you; The Lord lift up His countenance on you, and give you peace.”

In the scriptures, this was the blessing that God told Moses to tell Aaron to speak over the Israelites. What a powerful blessing this is, and knowing that it came from the mouth of God gives it so much power.

My prayer for my children, both existing and future, is that they will have a relationship with God. My prayer is that they will know Him as Moses did- that they will have face to face encounters with his presence.

The verse that gives me goosebumps is “The Lord make His face shine on you…”

Moses spent time with God on Mount Sinai and as he came down from the mountain the people were afraid to come near him. Little did he know that his face was physically shining! He spent time in the presence of God and the glory of the Lord radiated onto the face of his mouthpiece, Moses.

My prayer is that my children will have a relationship with God where they delight in being in His presence. I pray that God chooses them to  be His mouthpiece, just as he did for Moses.

This is hard for me concerning Malachi. I can’t confidently say that Malachi will ever be able to share his testimony verbally with others, and may not ever be able to be a “mouthpiece” for Him. But I can confidently say that Malachi’s story serves as irrefutable evidence that God exists, and his testimony speaks volumes about our God. My prayer for Malachi specifically is that he continues to radiate God throughout his life. That as we look into his sweet eyes, we can see nothing but the reflection of his creator.

Please continue to pray for Malachi’s brain. We are seeing so many improvements, and can’t wait to see what else God has in store for him.

Love,

Jake, Leah, and Malachi

 

2 thoughts on “May His Face Shine

  1. Malachi’s accomplishments are truly amazing and he has progressed a LOT!!!
    One thing struck me anew as I read again about the woman who wanted you to have Malachi walk rather than be carried. You said, “I didn’t know he was like that.” That, too, shows progress because he has better head and body control – – right?
    I am excited for him for school but it will be difficult for you. Will you go with him? I know his seizures are a major concern at times. So proud of you for giving priority for what is best for him developmentally.

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    • Hello Lynda! I will not personally be going with Malachi but he will only go to school if we are able to get a one on one aide to work with Malachi. You are correct, his seizures are a huge concern for us, so preferably we would like for his to have a personal nurse. It may take some major negotiating with the special needs department but it is a battle we are ready to tackle. And Malachi will only be going a few hours a day- at this point he is not ready to be fed by others so that will limit his time frame quite a bit!

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