This weekend was full of ups and downs as Malachi’s body is still adjusting to the new requirements. Right now he has a 3 pound weight attached to his halo pulley and starting tomorrow we will be increasing by 2 pounds a day until we reach 20 pounds (almost half his body weight) and head to surgery in a few weeks. I am sure you can imagine the physical ask that will be on his head, neck, and back.

Saturday morning Jake and Levi made the three hour drive over to spend the weekend with us. When I told Malachi they were coming he smiled for the first time since his 2nd surgery. He was so excited that it made me cry uncontrollably.

Here is a sweet video of me telling him and his response:

My emotions are very fragile right now and it doesn’t take much to lead me into sobbing. I am feeling so many emotions for Malachi…fear, pain, anger, frustration… Seeing that smile on his face again melted me.

Malachi was so excited about their visit that he stayed up all day to spend time with them. Last night they left to go to a local hotel and Malachi’s body started to panic. He used any reserve he had and was in an incredible amount of pain. I asked him where it hurt and he signed that it was his head and neck. Sadly there isn’t much we can do other than give him pain meds, but even that wouldn’t calm him down and I watched panic spread across his face. He started breathing hard and his heart rate was racing.

We finally got him calmed down around 3am and he has been sleeping ever since (it is 8pm Sunday night here). I imagine he will be up most of the evening, but I am thankful he was able to get a little rest after his painful evening.

The guys headed home this afternoon and we are settled in for another week. Jake was able to refill my supplies here and their visit was the distraction that we all needed from the hard things of the week. It felt good to smile again.

Levi was precious with Malachi, and has missed him so much. He kept sneaking over to his bed and whispering encouragement to him… “I am so proud of you Malachi!” And “I’m sorry you had to have more surgeries Malachi.” Their love is so genuine and special.

And Malachi LOVED seeing his dad. We are such a close family and we feel these moments of distance in big ways. All of us. Levi went on walks around the hopsital and dad and Malachi watched some sports together, one of Malachi’s favorite things to do with dad.

Malachi’s seizure activity has increased steadily throughout the week. At his baseline they are triggered by pain, so I suspect we will be seeing a lot more seizure activity through this process.

He has already started developing some bed sore spots with his rigid positioning and his incision site is extremely angry. I am hoping we can keep all secondary issues at bay since we are still in a pre-op window for the next surgery.

The surgeon has told us that the best possible position we can have Malachi in is how he is positioned in his wheelchair, so we have been trying to slowly build up a tolerance for that upright position.

I am finding a groove in our new space. We have spent many nights in hospitals and thankfully Vanderbilt does a great job at being caregiver friendly. There is a washer and dryer on our floor that I have access to and each room has a private bathroom with a shower. I even have a mini fridge in my room and access to a parent kitchen with ice, water, and a microwave. The hospital does not provide meals here to parents but there is a food court style area with a Taco Bell, Pizza Hut, Subway, and Baskin Robbins. I am on a first name basis with the Subway workers at this point. The adult hospital cafeteria is about a 20 minute round trip walk so I don’t go over there often. I don’t like being away from Malachi for longer than a few minutes at a time.

With Jake here we tried our hand at Door Dash and somewhat have that figured out for the days that a sandwich isn’t going to do the trick. And I have a shelf of snacks to get me through the other meals of the day.

Malachi’s amazon surprises have started coming in and I am so excited to unveil those during his harder days. It feels so good to have something on hand to cheer him up a bit. One of my biggest fears in the last 24 hours is that we are breaking his spirit. Last night he was so discouraged and frustrated. He stopped signing and shut down, eyes glassed over. It must be so hard to not have a voice and try to go through something so hard.

I also fear that we are going to come out on the other side of this weaker than every before. The few muscles he was able to use are not restricted and not able to be used. I am so afraid he is going to have zero head control when we leave.

Last Thursday as we sat in the pre-op area waiting on his operating room to open up a large group of adults walked in front of our area and stopped. Our nurse closed the curtain to give us visual privacy and explained that they were giving a hospital tour, as it is a teaching hospital.

We couldn’t see them, which I was very grateful for and I tuned them out for the most part as they talked about the policies and practices of the hospital. But for some reason my ears tuned in as the man leading the tour said one specific line (speaking generally about a policy): “…the patient should have been deceased and we shouldn’t have expended all those resources on the patient.”

I felt my heart drop into my feet when I heard these words, recognizing that many feel this way about my Malachi. That the logic of healthcare says he is a waste of resources. And while it broke my heart to be reminded of this, it made me incredibly grateful for the healthcare workers that were in that cold hospital room the night he was born. They saw Malachi as a unique individual, worthy of lifesaving attempts, regardless of the expenses. And I will forever be grateful to those hands that performed 15 minutes of CPR on his 1lb 12oz body. And it made me so thankful for the healthcare workers that “see” my Malachi for the amazing, worthy, perspective changing child of God that he is.

Throughout this past week I have had so many doubts that the people working on and with my son truly see him. That they see the amazing 12 year old that he is, not just the medically complex kid with a twisted frame. I am thankful for the few lights we have had this weekend on his care team that have taken on the task of creating the best environment for him to heal.

So this weekend was a big deep breath for me, a reset of sorts. I can’t change our circumstances and I can’t undo what has been done. So we move forward and hope that there is a finish line around one of the next bends in the road.

A few weeks ago I felt led to a specific song, “I Believe” by Charity Gayle, and it has been played on repeat for about a month. On Monday morning as we pulled up to the hospital for surgery I had it on in the car. There was a particular line that struck my ears and I have since then thought a lot about the words.

I believe You are who you say You are, You do what You say You’ll do,

You’ll come through, You are always able

I believe You’ve already made a way, so I’m running through parted waves straight to you, You are always faithful

I don’t know why this part of the song suddenly popped out to me. But I started thinking about the story in Exodus where God parted the Red Sea and the Israelites walked across safely, on dry land.

I laughed to myself that morning as I circled the parking garage and found a parking spot. I was thinking about what I would be feeling as I walked through the middle of the Red Sea, experiencing a miracle firsthand. And coming to the conclusion that I would probably be shifty eyed at those wave walls on either side of me as I made that journey through the Red Sea….literally running due to my innate mistrust.

But as this week has played out I can’t help but continue to think about this.

I trust God. But do I trust Him enough to enjoy walking the paths He has laid out for me? Do I trust Him enough to not question my safety in the Sea? T

This week has been a whiplash week as I look to the right and left desperately, trying to figure out how we got here. And trying to figure out how to escape.

But I have to keep remembering that we are exactly in the center of God’s will and that is the safest place we can ever be. I don’t know why we are here. But I don’t have to. Faith is walking through those waves without hesitation and side eyes.

2 Corinthians 4:16-18 “Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not see are eternal.”

May this week be an eternal minded week for each of us.

Sincerely,

Leah