Jake and I have been talking this week about how much progress we have seen in both of the boys in these last few months at home. Either they are making huge strides, or we kept ourselves too busy to notice- seeing such huge changes has been so good for our mommy and daddy hearts.

Levi started confidently running this week! It is probably the cutest little run you will ever see. He tucks his little arms up and can get a little out of control but in his mind he his as fast as lightning. His cerebral palsy has impacted his ankles so he runs on the inside of his feet, but it is a functional run and he gets more stable each day. Here is a sweet video for you to see him in action:

Levi is also in an imitator phase and copies everything he sees others doing. It is actually entertaining to see the things he tries to come up with. We don’t listen to headphones but he must have seen some of the youth group teens using these when they used to come over.

Malachi’s cognitive speed is increasing daily and seeing such clarity in thinking for him is just so special to watch.

 

He is so incredibly intelligent, so we have been working hard to teach him to have a voice. We give him options for everything we possibly can and try to wait patiently for his signs. We are also trying to teach Levi that Malachi has a voice and send him over several times a day with a question to ask Malachi. We tell Levi to watch for Malachi’s signs and it has become a fun game for the two of them. Malachi LOVES when we understand the things he is trying to communicate.

This week I messed up a bit and didn’t completely communicate to Malachi about our plans. One afternoon this week we had to run by his school to pick up his things. I had forgotten about this time frame and was reminded by a text his teacher sent 30 minutes before it ended. I plopped the boys in the car and headed over, not explaining to Malachi what we were doing. When we got there he had it in his head that he was going to get to go into the school like normal, which obviously we were not going to do.

And boy was he MAD!! He kept signing no and making it very clear he was frustrated with me. We worked through it and by the time we left we got a smile out of him with his teachers.

We spent the majority of our week outside enjoying the fresh air. Levi is getting bolder each day and actually let us swing with him this week!

And we have picnicked on the front porch almost every meal this week. The bears haven’t been back for a visit so I guess we are doing a good job at cleaning up.

Poor Jake’s to do list has been overloaded with random projects my mind keeps creating. This week he had to use several power tools, something Malachi thoroughly loves. I parked him over by Jake so he could get close to the sounds and be a helper. Jake let Malachi have a turn with the power drill and he was overjoyed.

Here is a video:

We also spent time watching the sunsets from the pool. Jake has been working hard on back filling it and getting it prepped for phase 2 (adding an overhead structure for shade for Malachi’s eyes). Every time we use it we talk about what an amazing gift this has already been for Malachi. It brings him joy but it also is so helpful for his tight tone.

Jake and I have been trying to make an effort to do a daily devotional together, something we used to do early on in our relationship but have slacked on in the last few years. I remember freshman year of college going to a local Christian bookstore and picking out Bibles together in the same translation. We used to meet up in between our dorms on a park bench and each read the same chunk of scripture, underlining things that stuck out to us or pricked our hearts. After we finished the chapter we would talk through each of the things we underlined, and it was always so refreshing to hear one another’s hearts. I love looking through those Bibles and seeing all the pen marks, knowing that God was building our relationship to be grounded in Him.

Anyway, Jake and I started Romans a few weeks ago and yesterday we hit Romans 8. It took each of us longer than normal to read through it individually, as there are so many incredible verses to think through in that chapter.

When it came time to compare verses we had several in common, but one in particular pricked both of our hearts…

Romans 8:18 “For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.”

Jake and I looked at each other with knowing eyes when we came to that verse. Before our special boys came along I don’t think I ever could relate to this verse. You grow up reading verses like these that talk about suffering, but never really knowing what suffering truly feels like.

I can tell you now with certainty living a life that contains continual suffering is horrific. Our hearts break each time Malachi cries out in pain from a tummy ache, or suffers another seizure leaving him confused and sad. Each time we hand one of the boys to a surgeon we do so knowing the suffering that they are about to endure post op.

Watching someone you love suffer feels somehow worse than being the one to go through it. Or at least that’s what my mind has determined.

But as Romans tells us, the suffering we are going through now isn’t even worthy of being compared to the glory of eternal life with Christ. Sometimes I catch myself focusing on the suffering now instead of focusing on what is to come…complete and total healing for both of my boys. When we shift our focus from earthly to heavenly things it reignites our hope.

If I hadn’t seen the suffering I don’t know that I would long so much for heaven for my family. The scenes continue to play in my head of the conversations Malachi and I will have, the walks we will take, the singing we will do together in the throne room. I like to think about running my hand over Levi’s smooth, tube free tummy and hear his clear and effortless breathing as he runs the streets of gold with his big brother.

These sufferings now can’t even be compared to what is to come.

Our sufferings have the ability to deepen our roots into Christ if we view them with the right eyes.

Please continue to pray for our little family. We are working on scheduling the surgeries and big appointments we have missed and it looks like we will be back in the operating room for Levi in August. We need prayers for health and strength leading up to these big appointments.

And if you get time this week take a look at Romans 8 and see what God might be wanting to point out to you!

Much love,

Leah