This week we were able to get a break from the mundane as Jake’s parents came down from Ohio for a visit. We spent the week playing cards, swimming in the pool, and having good conversation. It really was a refreshing change of pace, especially for Malachi and Levi!

As I mentioned before, we have been trying hard to get Levi to recognize Malachi’s ability to communicate even though he doesn’t speak. This week something has clicked for Levi and he thoroughly enjoys asking Malachi questions and reporting to me what he says. I will say “Go ask Malachi if he likes the movie he is watching.” And Levi will run like he is on a mission. I can hear his little voice talking to Malachi and a few seconds later he will run back to me and give me the full report. He hasn’t grasped interpreting yet, so he will mimic Malachi’s “no” face to me or mimic Malachi’s arm movement for yes.

 

Malachi loves it just as much as Levi and their bond is growing stronger through it. Levi has always been relatively inclusive with Malachi, but now he wants Malachi to do EVERYTHING he gets to do. He is constantly making sure Malachi never gets left out. Watching their love grow is so special.

Case in point, this Elmer Fudd hat has been all the rage this week with Levi. He wears it all the time for some odd reason.

But you better believe he makes sure Malachi gets a turn, giggling as he smashes it onto Malachi’s head. Seeing them laugh together is something I will never tire of seeing.

Malachi has had a great, seizure free week (aside from his typical 3-4 a day). He has been all about watching movies and has started to branch out from the same few he watches over and over again. I got him to begrudgingly watch Toy Story and he loved it. When I told him there were three more in the movie series he was giddy with excitement. We give Malachi a list of 3-4 movies to choose from and then move slowly through the list allowing him to indicate yes or no, and he is bypassing his favorites for new Toy Story movies.

I know I am his momma, but I am so proud of Malachi. I think about how frustrating and sometimes painful his world must be yet he always gives his best. And he is always smiling. I don’t get too many photos of him these days because he requires both of my hands to support him in most activities. But when I see ones like the picture below it reminds me of how much effort he has to put forth for simple tasks. Seeing him exhausted from trying so hard makes me so proud of him.

Levi is still a pistol, always keeping us on our toes! Today I had a friend watch him (more on that in a minute) and she said he at some of his snack but didn’t finish it all. Without asking him to he dumped the rest of the snack into the garbage and put his bowl in the sink. I was so proud until she told me the next part where he went and washed his hands in the toilet. Kids have a way of impressing you and humbling you in the blink of an eye haha.

Levi really likes routines, and one he has locked in on is praying before our meals. As soon as we sit at the table he reminds us to pray and won’t touch his food until the “amen”. I couldn’t help but snap a few pictures to share with you.

Today Jake and I celebrated our 12th wedding anniversary! With our family being somewhat on lock-down we knew it would be difficult to think of something we could all go and do together like we usually do. After talking over some options we decided Jake and I would try and sneak away for a float down the river by our house.

Doing this is would require us to find someone to watch the boys- something we have never really been comfortable with. We have had plenty of offers but with their medical needs training someone to watch them would take as much time as the outing itself. We also recognize that Malachi’s seizures continue if he is uncomfortable or needs to burp (something he needs help doing) so leaving always feels selfish.

We reached out to our of our very dear friends who also happens to be a nurse and she and her husband came over and sat with the boys for five long hours this afternoon! I can’t explain to your how freeing that time was for both Jake and I. We are on medical duty 24/7, so not having to think about those things was so unusual.

We were able to have some really wonderful conversations and rehashed our wedding day, moment by moment. We also talked about our honeymoon in Montana and how one day we would love to go back to that same small town and hide from the world for a bit.

We talked about how our circles have changed as our family as evolved. Some relationships have grown apart and others have become seemingly indestructible. We both recognize that we are a hard family to be friends with. When it comes to friendship we often don’t have a lot to offer…most of our energy and emotions go towards caring for our children. We do our best but fall short in many relationships.

We talked about how thankful we are that God opened so many doors for us early on so that we could grow and explore the world as a couple. God brought us together at such a young age and we were able to develop our friendship with one another before the challenges hit.

When we started decorating our new house I decided to saturate our walls in scripture. I was browsing online a few months ago and spotted a sign that caught my heart. It said:

“I choose you. And I’ll choose you, over and over and over. Without pause, without a doubt, in a heartbeat. I’ll keep choosing you.”

When I first read the sign my mind immediately went to my sweet Malachi. Read it again with him in mind. When Malachi was born we had a very hard talk with doctors about whether to continue lifesaving care for him, and we declared life over our sweet boy. We chose to fight as long as he wanted to fight. And we have no regrets.

I ordered the sign and when it came it I let it sit out for a few days, trying to figure out where I wanted to put it. It isn’t scripture, but when I read it I see the heart of God. And I see the heart we should have for God. I see relentless, unwavering love in its words.

Zephaniah 3:17 says “The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.”

This Bible verse is such a beautiful reminder to me that the Lord rejoices over us! He sees our flaws, our sinful nature, our dirty hearts and motives and he chooses to love us anyway. The purity of that unconditional love is overwhelming.

Alright, so back to the sign…

I walked by it day after day, reading its words and dwelling on them. And while the sign does fit for our miracle Malachi, my eyes started to see it through a different lens and apply it to Jake.

“I choose you. And I’ll choose you, over and over and over. Without pause, without a doubt, in a heartbeat. I’ll keep choosing you.”

Marriage is a challenge. It starts out relatively easy but then morphs into something that takes a lot of consideration and effort. Putting another adult’s needs before your own is not a natural instinct and is something that takes intentional action.

Our marriage has ebbed and flowed with the tragedies and victories we have faced. The more our focus gets distracted from each other and redirected towards our boys, the more I see the importance of the phrase “I’ll keep choosing you.”

Marriage isn’t a one time ceremony. It is a daily decision.

So that sign ended up above our master bed. Seeing it daily reminds me of the effort I need to be putting forth in the relationship. Seeing it also reminds me of the value I hold in the eyes of God.

The love of God is a beautiful thing, whether you are receiving it or giving it to others.

Please continue to pray for healing for my boys. Sometimes I forget to pray for their healings, as I am distracted by the minor aches, pains, and diagnoses.

God bless,

Leah