Malachi just over 24 hours out from his last surgery and it has been a day of learning. The halo gravity contraption that they have him rigged into is hard to navigate and it takes a lot of effort to get it into just the right position for it to do its job but also allow Malachi to breathe safely.

As you can imagine, Malachi is miserable.

Malachi keeps signing that he is in pain. As he should be! He has been through so many painful things this week. We are alternating a few pain meds, trying to keep him comfortable but after a bit he gets uncomfortable again. I am not really able to mother him independently. Even changing a diaper is incredibly complicated and requires all the weights to be taken off by a nurse and then reset when we are done. They placed a catheter last night to limit how much movement we are doing but we plan to take it out tomorrow.

Today a team came by to tighten the screws into his skull, which was hard for all of us. We also got him seated in his wheelchair and rigged his halo to dangle off a pole attached to his bed. He made it a few hours before he got uncomfortable.

Overall my boy is so sad. I am trying so hard to not be miserable on his behalf, but the idea of doing this for 2-3 more weeks is hard to process for both of us. They keep telling me that he will get used to it, but I am not so sure. I miss his freely given smiles and contagious joy.

He did have a visit from one of the therapy dogs in the hospital which was a fun treat. I also spent some time shopping for surprises on Amazon that will help distract him from his pain. Those should start coming in this weekend to a friend’s house in Nashville and perk him up a bit. Thank you to everyone that helped contribute to those surprises for him. It blessed my heart so much to be able to shop for him today without budget limitations. It was the one mom thing I got to do today, so thank you on behalf of Malachi and also on behalf of me!

Jake and Levi will be here for the weekend as well, which we are hoping will perk him up! Prayers for Levi as he tries to process Malachi’s new equipment and suffering.

We are trying to restart Malachi’s feeds slowly and that combined with his pain is triggering his seizures. The seizures don’t respect the device he is rigged into and sometimes that puts him in positions that cause more pain.

I asked for them to slide his body a little to the side so I could have a spot to slide into bed with him during the daytime hours. I may not be able to mother him right now or take care of his needs but I can be his friend and help him feel not so alone.

This isn’t a very positive update, but I don’t really feel compelled to fix that tonight. Last week as I was packing our bags for surgery I found Levi in the bedroom, curled up in bed and sobbing with the lights out- clearly upset about us leaving for surgery. I asked him what was wrong, and his precious response was “Nothing, I am just having a sad night.” So I laid down in the bed and cried with him, reassuring him that it was okay to have a sad night every now and then.

So tonight is simply just a sad night.

I am so thankful for the Word of God, as there is something in it for every emotion, every trial, every circumstance that we may face. And tonight I am thankful for the reminders about our dark seasons in life.

Psalm 34:18 “The Lord is near to the brokenhearted and saves those who are crushed in spirit. Many are the afflictions of the righteous, but the Lord delivers him out of them all.”

It may be a sad night- a crushed in spirit night- but because of God I can have hope the current is slowly pushing us towards dry land. We will find our footing again soon. And I am confident that God is still with us.

Sincerely,

Leah