This time of the year feels like a marathon, but when it ends we get a nice two month break as a family!

Levi finished up his school year with a cowboy themed school program. He has grown so much emotionally, socially, intellectually, and physically in the last year. We are incredibly proud of him and the hard worker that he has become. Watching God work in his little heart has been a genuine blessing to us.

Malachi and I cherished the last few days together for his homeschooling, knocking out a few more chapter books and some other fun projects. He had his annual visit with the neurosurgeon to check his shunt and we went out for pancakes as a special end of the year treat; he loves the syrup and loved the special date. I even let him pay, swiping the card and signing the receipt like a man!

Can we just take a minute and talk about how big he is getting! Look at those long legs!!

Jake wrapped up his classes and held his annual Redneck Regatta boat project. The kids make boats out of cardboard and duct tape using buoyancy formulas. Malachi and I always love sneaking out to the river to watch the successes and (many) failures.

Our summer has already kicked off to a great start with lots of swimming and playground time! Trying to teach Levi how to swim without a life vest has been entertaining.

We are adjusting to summertime schedules with Malachi staying up until 2:30 and wanting to sleep in and Levi waking up by 7am. His first morning off of school Levi came into my room around 6:45 with his feeding backpack in hand for me to unhook him. I clumsily turned off his pump and unhooked his tube and he asked me “Mom, are you still tired?”

I replied, “Yes, I am exhausted.”

Levi: “Why?”

And before I could answer he said: “Ohhhh I know why you’re tired!” Then leaning in closely he whispered “It’s because you have a special needs child.”

Oh boy.

Back in 2016 when we were building our house we were debating between a basement and a garage. Our budget would only allow one so we ended up settling on a basement and dedicated the space to whatever the Lord would want to do in it. We felt like it was a way to “tithe our home” if that makes sense.

Since then we have been able to hold countless Bible studies, worship nights, and youth events and it continues to be a space that we open as often as we can to show the love of Christ to others. Last weekend we were thrilled to host a former youth and his friends. We gave them their space but they invited Levi to come down and spend some time with them before his bedtime and join them for dinner.

We all miss teaching the youth so much, and Levi especially misses doing life with the “big kids”. He cries often about this and we are continually trying to work through that change. We held an open field for the girls soccer team and he was shaking with excitement as we drove over to the high school. When we arrived and he saw all the girls he shouted “I get to be around the youth again!!”

This afternoon I went on a brief road trip with Malachi and Levi to meet up with another special needs mom. On the way there I asked the boys what movie they would like to watch and Levi asked for “The Sound of Music” which I gladly obliged. Side note- their other favorite right now is Seven Brides for Seven Brothers, another old musical.

I had the audio of the movie playing through the speakers and heard a line from Captain von Trapp that resonated with me. He was asked how he ever manages to leave such a beautiful home so often.

His reply: “Oh, pretending to be madly active, I suppose. Activity suggests a life filled with purpose.”

And this struck me as such an honest and profound belief. I often mistake busy-ness with purpose and find myself still feeling hollow and empty. Even when I am home I am keeping my brain exhausted with thoughts that don’t matter and outcomes that I cannot control.

The Bible study plan that I am working through has been hopping back and forth between several Old Testament books involving King David and the Psalms he wrote surrounding the events of that time. Reading them in this way has given my brain time to really focus on each Psalm and find so many treasures.

Psalm 19:14 has been coming to mind often this week as I have been evaluating the inner thoughts.

“Let the words of my mouth and the meditation of my heart be acceptable in Your sight, O Lord, my rock and my Redeemer.”

Over the last month we have personally known 3 families who have lost their special needs sons. One was a very sudden and unexplained passing. Two were respiratory related and share many diagnoses with Malachi. And one more right now is in the ICU and they have begun comfort care, expecting him to pass within the next 24 hours.

These deaths have impacted me. They have reminded me about the fragility of our situation and how quickly things can change. These losses happen often during cold and flu season, but are more rare in the summertime when viruses aren’t as prominent.

I still know without a doubt that God has prepared a timeline for Malachi’s life, but even that assurance hasn’t been able to ease my anticipatory grief for a life without my Malachi.

I have found myself struggling a whole lot with the “meditation of my heart” part of that verse. My heart has been meditating on many things, many of which are not acceptable in God’s sight. I read somewhere that worry is worshipping the problem, and I love this reminder that the idolatry of control can steal our eyes off of Him.

The meditations of the heart are a reflection of who/what you are worshipping. And by examining my own meditations lately it is very clear that I have been worshipping the wrong things.

I have been worshipping others opinions of me.

I have been worshipping my hurts- both past and present.

I have been worshipping my desire to be God in the life of my son.

A truly Spirit led life will produce a worship with God at the focus instead of ourselves. And meditations of the heart that reflect that properly placed worship.

This week I am praying for a sensitive heart to be able to spot my misplaced worship and the burning desire to re-center it on the Lord.

Please continue to pray for the unique battles that many medically complex families are asked to face. Our faith is tested daily in some mighty ways and weariness sometimes starts to feel like a friend.

Sincerely,

Leah