Oh What A Countenance

Oh sweet Malachi. What a happy boy he has been lately. He can make a game out of pretty much anything and loves to make us laugh. This week he has started to actively hug when I ask him to. He can’t wrap his arms around me well, but he will squeeze them tight allowing me to feel some pressure…he is trying so hard. I think back to the list of things I had come to terms with that he might never do, and hugs was on the list. How refreshing it is to feel those arms squeeze me.

Malachi is an amazingly quick learner, and he is so eager to learn new things. He loves to listen as I teach him about new things and you can see his brain working hard trying to decode it all. This week we have been working on letters and their sounds as well as numbers.

My newest mission is finding a way for him to communicate “yes” without a device. He can communicate “no” by pursing his lips, but we don’t have a motion for yes. We started tonight by recording both words into his two button switch and asking him questions. “Would you like mommy to tickle your tummy?” and then activating the word he wants. If we can connect the word with the action (or lack of action) then maybe we can even get him to the point where he can verbally say it.

Malachi’s little heart is so tender and full of love. I can’t even count the number of times in one day that he makes my heart flutter with his sweet looks or his beautiful countenance. His eyesight continues to improve and he now will actively search for me or his daddy around the room. When he has found me his face will burst into the sweetest smile you have ever seen. When we sit together I have been asking for him to look me in the eye, and each time he does I feel like we connect on such a deep level, if even for a second. Malachi made eye contact with Jake this week for the first time and it was such a tender moment.

Malachi has always been a giggly boy, but lately the whole world is his entertainment. No matter what we do, he will think something is funny (usually a noise that sounds like a toot) and laugh with his whole body. Once he gets the giggles he can’t stop and his eyes sparkle with a unique clarity in these moments. There is a hard working brain in that little head of his.

An alarming amount of children like Malachi from our support group have passed away in the last two weeks. Most of them contracted an illness and it escalated into pneumonia. Several others have been having severe seizures that require ambulance rides and hospital stays. As I have read these horrible updates my mind has obviously wandered to the what-ifs.

I started imagining what life would be like now if he hadn’t survived the night he was born. We are so blessed that he survived. And getting to know him has made that blessing grow and grow. I know that God was in the room that night. I know that Malachi was surrounded by heavenly hosts, comforting his spirit with music while his earthly body struggled to come back to life.

Had he not survived, Jake and I would have grieved over the loss of a child…a child we never got the chance to know. But he lived. And our lives, both spiritual and daily, are so enriched with our unique blessing. God has given Malachi such a countenance. When I look at him I can’t help but see a reflection of a glimpse of heavenly things. I see in his eyes a world that I have not yet seen…those eyes have seen God’s glory.

This morning Malachi sung his little heart out at church as they played “10,000 reasons”. The line goes: “I’ll worship his holy name, I’ll worship his holy name.” His little brain takes time to process and he has to work hard to muster up the strength to speak a word. But by golly, that boy SHOUTED “name” on cue each time it arrived in the song. It brought tears to my eyes.


Malachi has had a great week. He worked so hard at horse therapy so I tippy-toed into the arena to catch some on film; if he hears me he stops working to listen so I have to be sneaky. When he wants the horse to go he has to make a motion with his hand and say “walk”. Here is a clip:

This week was an exciting one as we received the green light to start breaking ground on the property. We are so excited about the possibilities the new house will bring for Malachi. One of the things we will be prepping the home for us a track system to help with transporting Malachi from his bed to the bathroom changing table and roll in shower. These track systems require extra supports in the ceilings and door frames, as well as high outlets for the chargers. Since we are starting from scratch we will be able to include all these things so that when the time comes we will simply just need to order the track. We will also be able to plan lighting fixtures around a future system. Here is a visual of what I am talking about:


Jake and I have been trying to get ourselves more comfortable with allowing Malachi to go to the church nursery (but only when other kids aren’t present). A wonderful woman at our church has taken the challenge of Malachi head on and has been taking him in with her on Wednesday and Sunday nights. She sent me a few videos this week from their hour together and I thought you might like to see his silliness with her; ignore the creepy doll in the background haha. Also note how hard Malachi is working to imitate sounds. This has been his new project this week and I am so proud of how well he can mimic!

More and more I have been thinking about school for Malachi. If I could eliminate all the germs he would come into contact with, I would feel so much more comfortable sending him! But it is something we are going to look into at the start of next school year. It may mean having to explore some medical routes we have been avoiding, like a g-tube, so he can be vented if he has excess gas at school sparking seizures. We are really going to have to put a lot of thought and research into the whole idea before we commit. The last thing we want to do is make decisions hastily and not out of absolute necessity.

So overall it has been a fun and relatively easy week with Malachi. The weather here has been absolutely wonderful with temps reaching into the high 60s. Friday we went over to a friends house for a playdate with one of Malachi’s buddies and we had a nice picnic outside. I stuck my phone out the window on the drive home from the play date so I could capture the beauty of that January day…simply breathtaking.


Jake’s birthday is this week so he is going to take a day off and we are going to the aquarium! We have never tried taking Malachi there, as his eyesight has never been good enough but I think he will enjoy the colors and movement.

Speaking of birthdays, Malachi’s is creeping up on us! I still can’t believe that it has been 4 years!!

I read this verse this week and can’t help but dwell on the words “perfect peace”.

Isaiah 26:3-4    “You will keep in perfect peace those whose minds are steadfast, because they trust in you. Trust in the Lord forever, for the Lord, the Lord himself, is the Rock eternal.”

In our crazy life, peace is something we crave. When we have it, we recognize it and make an effort to not take it for granted. We are always on alert, knowing that the peace could be gone in an instant with one medical emergency. But as this verse reminds me, perfect peace doesn’t come from a lack of stressful situations, but rather it comes from steadfast minds that trust in God- regardless of how crazy life’s moments are. When peace is perfect- meaning it comes from God- it settles on your heart through your worst tragedies and your greatest successes. It is an ever present reminder that God always wins.

My prayer is that each of you get to experience this perfect peace…because with it comes a relationship with God. It comes when we recognize God as our father and allow Him to protect our hearts with his peace.

May God bless you,

Jake, Leah, and Malachi

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