It’s been two long weeks since I posted the last entry! I was really hoping to be able to share that we were back into normalcy, but Malachi is requiring a little more time to get regulated again.
We have still been struggling to get smiles out of him and going to some pretty big efforts to see that grin! We even borrowed a friend’s monkey to see if that would cheer him up haha! Not even a side smile for that attempt. But Jake and I got some good laughs.
I took Malachi over to his school during pickup time last week and hearing all his buddies say hi as they walked by brought a smile to his face. He even chuckled for the first time since before his February surgery, silently shaking his shoulders while smiling from ear to ear.
Malachi’s pain is relatively well managed right now but he is still having some trouble with stamina off of oxygen. We will make it 1-2 days off oxygen and then he gets too tired to maintain his breathing quality and he goes back on oxygen for a few days.
I think his overall weakness is the biggest hurdle we have to overcome. We restarted his physical therapy last week and I am really hoping that will help him have more confidence in his new body. His color has improved tremendously and we are working hard to add some weight on. We have been spending time outside in the sunshine and fresh air, which has been good for us all.
Sleep is the other elusive factor, with Malachi staying up for 48 hours and then sleeping an entire day. He did this a few times in the hospital so I am not quite sure what to point to. Today he slept from 10a-10p. We tried our best to wake him up to help him regulate a bit and he just wasn’t having it. We are still set up in the living room until we can get him towards a more consistent and normal schedule.
We still celebrated with Levi, hiding some eggs and talking through the significance of Easter with him. We love using Resurrection Eggs with him still!
Last weekend I had the chance to attend a Ladies Conference in South Carolina! This is huge for our family, and the first time I can think of that Jake has stayed home with both boys and I have gone out of state. Malachi’s care is still very much hands on, and with him not sleeping it adds a level of complexity to his care. But Jake was up for the challenge, recognizing my need for a brain break! I am thankful for him “seeing” me.
It was difficult to shut off my brain for a few days, but the freedom I had mentally was such a needed gift.
The Lord and I are working through some things right now. The discomfort these last few months has brought has revealed a lot of sin and baggage in my life that I am needlessly carrying. I am so incredibly tired and weary right now physically and spiritually.
I am in an Ephesians 6:16 season: “Above all, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.”
I don’t have a lot of energy to fight, but I am relying heavily on the shield of faith to block the attacks of the enemy. Right now those attacks are all mental ones- remembering the wounding words of others, feeling disposable and unseen, being asked to do more than I can feasibly do.
Hebrews 12:11-12 “All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness. Therefore strengthen the hands that are weak and the knees that are feeble.”
I have to keep having faith that this challenging season is yielding peaceful fruit of righteousness. That God is taking all of my meager efforts and allowing my weak muscles to grow through this process of sanctification.
Still a work in progress and a continual conversation with the Lord. But isn’t that how our walk with the Lord should always be?
Thank you for the continued prayers and support for our family over the last few months. We are slowly finding our footing and hoping each day is better than the last. I am hoping our next entry will yield some more answered prayers for sleep and pain relief for Malachi!
Sincerely,
Leah