There are a lot of unspoken conversations that take place in my heart- conversations that just don’t feel safe to say out loud as they sound so messy with no definitive “right” answer.

One of those conversations lately has been surrounding my ability to protect Malachi from mistreatment- both overt and subtle. He is such a pure child and doesn’t understand social structures or seasonal friendships. Frankly, I struggle with this too. I talked briefly about this in a post in July and the topic continues to pulse in my heart and re-evaluate many things.

A painful turn of one of my past friendships (which in turn hurt my sweet boy) has made me cautious towards so many things. One of those being whether or not I should be sending Malachi to school this year. I want to bubble wrap him and not introduce him to relationships that he will value and cherish significantly more than the other party. If I struggle with the emotions of feeling disposable then I can only imagine what it does to his naive and tender spirit.

For a typical child friendships would begin organically, but for Malachi this process requires intentionality. I want to surround him with people who display the unconditional love of God. And knowing that I can’t judge the intentions and heart of others it makes me want to just keep him home and shower him with all the love I have. But I also recognize that that isolation would rob him of so many opportunities for real and authentic friendship.

Malachi started his school year last month and I have watched him from afar, trying to hard to evaluate if school is something that enriches his quality of life. This year we increased his classroom time to 3 hours per day and he floats in and out of several classrooms with several friend groups. And after a month of school I have been blown away by how much it has changed him in amazing ways.

Malachi is now starting to communicate with other students, and they have eagerly and willingly learned how to read his sign language. Not because that kindness will be noticed and celebrated by teachers, but because they truly want to know him. The joy they have when they accurately read him communicating with them is so pure. It has also built Malachi’s confidence in being heard enough for him to attempt to communicate with others outside of the school setting.

He is regulating his sleep into a more predictable pattern, and staying awake the entire time he is at school. This has been one of the biggest surprises for me and a sign that he genuinely wants to be there every day as he is making the effort to change these patterns.

But the biggest blessing for me this past month is seeing so much joy pour out of him. There have even been mornings where he wakes up belly laughing, excited to start his day. Each afternoon as I recap his day at school with him his smiles are uncontrollable and his eyes shine with such an excitement. I can’t help but cry with joy when I see that joy.

School has most definitely improved his quality of life. And it is leading to such sweet friendships that are mutually beneficial and not one sided. He is getting to experience unconditional love from others outside of his family unit.

I also love seeing the heart of Christ that it is cultivating with the other kids. I sit in my car and watch them do such special things, like surrounding his chair and covering his eyes as a team of students from the sunlight when they wheel him outside. This week as I watched him interact with his friends at school I couldn’t help but think that these are the types of friends that would be willing to carry Malachi to the roof and lower him down through it to get him to the feet of Christ.

I am very thankful for the school he is in and the efforts they have taken to provide an inclusive environment for Malachi. In a public school system he would be in a self contained classroom, which would lead to friendships of course but not necessarily allow Malachi to experience the silliness, stinkyness, and chaos of being a typical 12 year old boy.

He is seen as a valued and cherished child of God. It is beautiful.

Levi is also enjoying the start of his 1st grade year and making big gains! The stories I could share with you from the last two weeks would keep you laughing; he always has something on his mind that leads to some pretty fun conversations.

Earlier this week he was getting read for a soccer game and telling me a story at the same time about a disagreement he had at school with a friend. He said “Mom, ______ said I was incapable.” I smiled to myself at the big word and asked him if he knew what it meant, to which he replied “It means I can’t do things right!”

I was pleasantly surprised that he knew the correct definition and then watched him come around the corner with his indignant little face, mad about being labeled “incapable”….and his shirt was on completely backwards.

Our high school soccer season is in full swing and the boys have been enjoying being side line for the games and practices. Levi has been taking his job as Manager very seriously.

Last week the girls lost their game and we were doing a final talk, highlighting the good and the bad from the night. Levi asked if he could say something to the team and I said “sure”, surprised he had something to say. He put on a very serious coaching face and put his hand out, sternly pointing at them and saying “I am ashamed of all of you.” I was flabbergasted and reversed that speech as quick as possible.

We had just watched the movie “Radio” with him and I guess seeing an intense coach on the big screen impacted him more than we imagined haha.

We had an incredible amount of medical appointments over the last week and Levi’s GI doc was happy with his progress on the growth curve. We have been trying to increase his g-tube nightly feeds to counteract the increased calorie burn from recess and school but he is very sensitive to these changes. Even the slightest increase of feed was making him wake up vomiting! It seems we have found a good balance for his belly and calorie count.

Levi also saw the pulmonologist last week and did a test to see if his lung function could be helped with an inhaler when he is active. The results showed that the restricted breathing is still solely from his paralyzed vocal cords.

Malachi had a CT scan to evaluate whether or not the shunt being broken was impacting his brain ventricle size. While the ventricles are a slightly different shape than the last scan the fluid level is still in a safe range. So we will continue to go in for CTs every few months to make sure his body is managing his spinal fluid well.

He also started seeing a urologist for some urinary issues and will require some testing/imaging later this month. It is always a little hard mentally when we add a specialist/diagnosis.

Psalm 91:11-12 “For he will command his angels concerning you to guard you in all your ways; they will lift you up in their hands, so that you will not strike your foot against a stone.”
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I have this verse hanging in each of the boy’s bedrooms and therefore walk by it every night and every morning. Lately it has served as a reminder to me that, even though I am the primary caretaker on earth for these boys, God has commanded His angels to carry them through the life that He has chosen for them. And the angelic strength and mission is fueled by the will of God rather than the meager will of man.

Of course I want to keep their feet from striking rocks. But maybe the things I see as stones in the path that I try to avoid are the very tasks that God has prepared in advance for them to do (Ephesians 2:10).

Please pray over the wisdom we need to walk through unknown territories as the boy’s grow older and the fears change. And please pray for my ability to take every thought captive- my mind has been battling so much baggage lately.

Sincerely,

Leah