Summer Days Drifting Away

I am so very pleased to report that Malachi is back to his normal, silly self! He has been so excited to be back in his element here at home and doing things that are familiar to him. We are starting to get him back into a routine, even regarding sleep, and although it still has moments of chaos, life is calming back down. His seizures are occurring less this week, but he is still having more “sparks” than normal so we will be contacting his neurologist to see about adjusting some medications.

Every year the end of summer seems to sneak up on us. Jake has exactly one week left before he returns to school so we are trying to find the balance of cramming in family fun as well as giving Jake the rest he deserves!

This week was a hot one here in Tennessee and as you know, Malachi is not a fan of the heat. We tried a hippotherapy session on Monday but the heat was also affecting the horses and they were not cooperating one bit! The therapist quickly recognized that we weren’t going to have a very productive session and changed gears, pulling out another horse and riding with Malachi. By the time we got settled Malachi was so warm from the temps that he became a limp noodle.

Malachi’s physical therapy and occupational therapy sessions ended in a similar manner with a wiped out little boy! When we arrived his therapist told us they had sanitized the ball pit and had kept all other patients out until Malachi could take a turn. I was thrilled to see how he would react to the stimuli, and after a few minutes of soaking the concept in, he was hooked! He has to work so hard to handle multiple stimuli and by the time we finished in the ball pit and on the swing, he was ready for the session to be over.

 

To combat the heat we spent lots of time in the water this week, playing in the local creek one afternoon and spending some time in my sister-in-laws pool. That boy still loves to swim!

Jake and I were talking about last week’s visit to Ohio and noting how differently Malachi was perceived by strangers. Up north, people would completely ignore Malachi, averting their eyes from him and almost acting as if he wasn’t there. Not in an offensive way, but it was definitely different than our environment. This week Malachi and I went to lunch at Cracker Barrel where a random stranger went and bought him a stuffed toy and brought it over for him to play. At another restaurant this week, multiple strangers came up to Malachi and started conversations with him…not us, him. Malachi loves the interaction, and we secretly love the support those moments offer us. It is nice to see a world that embraces our little boy instead of avoiding him.

It is continually touching to us how strangers offer support to Jake and I in the most simple ways. If I had to guess I would say we have had complete strangers buy our meals at least 20 times just this year. Process that. That is ridiculously amazing!! And each time it happens, both Jake and I get teary eyed at the unspoken support we feel in our journey. And the greatest part is, each time it happens it is at a time when I need a boost. Times when I am emotionally fragile as I deal with the physical and emotional toll of caring for Malachi. God is using people in our world to remind us of his love. It is powerful.

Malachi’s little brain is definitely going through changes and we are so happy to see progress. He is attempting to use his vision more and when I ask him “find me with your eyes” he truly makes an attempt to lock eyes with mine. We are also impressed by his response time to simple commands. If I say “sit big” he will pop his chest out and sit tall for a few seconds. If I say “show me sad Malachi” he will stick out his bottom lip and give you his sad face. It used to take him so much thought and effort to reach his hand up to a toy when asked, but now he will do so within 10 seconds of me asking him to. Malachi was playing with one of his toy cars while I worked on the computer this week and I thought I would film a short clip for you. You can see how hard he tries to do what I ask of him.

His personality continues to shine through and we are so awestruck by his ability to be mischievous. His new game this week was waiting until I pick him up out of the bathtub (something VERY difficult to do with his limp body) and on the way up to my shoulder he will grab the shower curtain and not let go. Both of my hands are occupied trying to hold up a 40 pound slick child and he knows I can’t do anything about it. I try to wiggle him loose which causes the curtain to make noises, which is apparently hilarious! Little stinker.

We are also seeing glimpses of his amazing memory. This morning during church the song director chose to sing “10,000 Reasons (Bless the Lord)” which is his all-time favorite song. I didn’t tell Malachi that it was coming, but within 3 notes he knew the song and started literally squealing with joy. Most of the church knows that it is his favorite song and will even refer to it as “Malachi’s song”, so hearing his joy made the congregation erupt with laughter.

Daily I find myself looking at Malachi and realizing how incredibly lucky we are. He has such a big personality and a gentle spirit. We met a local family this week that wanted to take a look at our handicap van to see if it would work for their 25 year old son with cerebral palsy. This young man has been severely affected by CP and is unable to interact at all with his world…no facial expressions, no recognition, and his body has been overtaken by the effects of CP. My heart hurt in comradery for this family as I tried to imagine daily life caring for a son that couldn’t grab the shower curtain or mischievously color on the table.

I think back to Malachi’s early and rough beginnings and the predictions that were made about his life. And while he is not unscathed, we have definitely witnessed a miracle healing in his life. His full healing has yet to come, but until that day we will simply thank God for the blessings he has already provided for our family. We will thank him for the shower curtain moments and for the sleepless nights like tonight when I am interacting and playing with a wide awake 3 year old who wants to listen to his favorite Bubble Guppies episode. We will thank Him for the blessings both great and small.

Much love,

Jake, Leah, and Malachi

 

 

 

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