A whole lot can change in just two weeks.

About a week and a half ago I got a call from Malachi’s back surgeon at Vanderbilt. When I answered the phone and heard the voice of the surgeon himself I felt a cold chill run down my spine. All medical mommas know that a direct call from the surgeon is often a bad thing.

H explained that he looked over the CT scans with the chief surgeon and they decided that it wasn’t safe for Malachi to have the back surgery done as planned. They are now planning to do two different spine surgeries. The first one will be in late February and they will come in through the front to put plates and screws into the lumbar portion of his spine. They will need to move his lungs for this one prompting chest tubes and a longer hospital stay. The second spine surgery will be in early April and will be done through his back to fix the thoracic (middle/upper) part of his spine. He kept reiterating that this was the safest way to handle his anatomy.

Then last weekend we got another call from Vanderbilt asking if Malachi could come for surgery on both feet on Tuesday. Thankfully we were able to rearrange our schedule and say yes. The foot surgery is the mildest on the list and one we had originally planned to pair with one hip. But now that the back surgery timeline is going to scale the course of 4ish months we figured we needed to jump at the chance to get his feet in a comfortable position.

In the meantime between the phone call and foot surgery we had planned to celebrate Levi’s 7th birthday!

This was the first year that he was extra excited about it being his birthday. He got a special Chick-Fil-a lunch at school, a few fun presents, and dinner at the hibachi grill.

Let me just take a minute and show you Malachi’s face when they brought out the drums and sang happy birthday to Levi. He was so happy.

He also got the chance to sneak over to the farm and meet the newest babies (a fox, an alpaca, and a llama).

Then over the weekend he had some school friends over for a birthday swim party, and some church friends over the next night for a November night swim party.

Saturday evening after his party ended we got the very unexpected news that my grandmother had passed away. She was 93 years old and was recovering from something viral when she very suddenly passed away.

My grandma and I were very close and she loved my boys very much. We spoke over the phone often and we made trips to Ohio to visit her as frequently as we could, surprising her just last month with a visit.

Grandma had such a spunky spirit about her and was content with a very simple life. She was always thinking of others over herself and never wanted to be a bother to anyone else. There are so many stories, so many memories that I could share with you…but they all end with the same sentiment that Grandma was a very special woman.

We made plans to travel to Ohio for her funeral at the end of the week and had to put our focus, emotions, and energy into getting Malachi through his foot surgery.

Levi was upset by the news about grandma and very anxious about Malachi and I leaving. I am so thankful for our community of support that helped keep his day as normal as it could be. He rode to school with classmates and was treated with understanding and love, which brought peace to my momma heart. Malachi’s school friends all wore red to support him on his surgery day and made dozens of cards for him to read while he recovered. We are so blessed to have found such a supportive and loving place.

Malachi and I headed to the hospital early Tuesday and checked in for surgery around lunchtime. Malachi was excited about the one on one time with mom and had such sweet smiles the night before surgery. He knew he had to do hard things, but loved the idea of us snuggling in the hospital bed and watching movies. Hospital stays have been such treasured moments for us to connect.

Malachi’s lack of oxygen at birth severely damaged several parts of his brain (Hypoxic Ischemic Encephalopathy). One of the overflow diagnoses of that is Cerebral Palsy. Some kids with CP are floppy (HYPOtonia) and some kids are tight (HYPERtonia). Malachi is a mix of both. He can’t sit unsupported or hold up his head well (hypo) but his brain has told his muscles and tendons to pull his hips out of socket and dislocate other bones (hyper). His feet are a perfect example of his hypertonia.

Malachi had a tendon on the outside of each foot that pulled so tight it dislocated his foot bones. The surgeon cut the tendons then fused the bones back in place with permanent staples. This will hopefully be a forever fix for him.

He has some pretty amazing Spider-Man casts that will stay on until December 23rd.

Malachi spent nearly four hours in the operating room and we spent the night at Vanderbilt for pain management and some oxygen support. I truly think it was a God thing for this surgery to happen the way it did as they were able to see the level of support he needed for a “minor” surgery and have now made plans to reserve a spot in the ICU for each of his spine surgeries. The surgeon also noted how much Malachi bled through this surgery and they are going to make sure to have several bags of blood on hand for transfusions for the next few.

Malachi and I made the most of our stay. I am always so proud of how he handles such big challenges. He is truly amazing.

We were discharged Wednesday afternoon and left Thursday for Ohio. Recovery has been hard for him. He managed the pain well until about the third day. We had already made the trip to Ohio and had thankfully packed several “worst case scenario” things including his oxygen concentrator which he did end up needing.

We returned from Ohio last night and he smiled for the first time since surgery. We are working to wean him back off of oxygen and get him strong enough to return to his baseline.

We got to visit with family while we were in Ohio, even getting to see my other sweet grandmother. I keep telling the boys how blessed they are to get to meet two great-grandmothers in their life! Not many kids get to do that.

Grandma’s funeral was hard for all of us. It’s always hard to put a period on the end of the sentence of someone’s life. But it led to some really precious conversations with the boys about heaven and the providence of God.

As you can imagine, I have been all over the place with my emotions. Surgery day was hard. Anytime I have to hand my child over to the surgeons it creates such a turmoil in my soul. Getting to lay eyes on them in the PACU after surgery is all I can think about and until that moment I have such unrest brewing inside of me.

I felt like this round was a dress rehearsal for all of us for the hard things we have coming up.

I didn’t give myself room to grieve or process the loss of grandma until after we left the hopsital, wanting to be able to give my focus and energy to Malachi. The closer we got to Ohio the more real the loss became.

By the end of the weekend I find myself so incredibly weak and tired. I can’t tell you how many times this week I closed my eyes and just spoke to the Lord saying “God, I am just so tired.”

As we navigated the timeline to try to get north for the funeral amidst surgery recovery unknowns I was overwhelmed with a feeling of inadequacy. I feel like an inadequate mother, caregiver, wife, friend, Christian, daughter, granddaughter. I had to miss my grandpa’s funeral due to Malachi’s brain surgery in 2013.

I don’t get to pick the hats and order them. My medical momma hat always has to be worn on top of all the others. And sometimes the relationships I am in aren’t able to withstand the “bleeding” that can take place when my current and past traumas edge into their worlds.

Sometimes I get jealous of “normal”. I got upset that I couldn’t even grieve the way everyone else does. I want to be able to drop everything and be with my extended family. But I knew this week that I had to try to put it aside until after Malachi made it through his surgery, not wanting my emotions to impact his headspace leading to the OR.

As I sat in the surgery waiting area and prayed this verse from Psalms kept coming to my mind and mouth.

“The Lord is near to the brokenhearted and saves those who are crushed in spirit.” Psalms 34:18

As I thought about those words I grew increasingly thankful for them as they perfectly summarized my state of mind. I was (and am) crushed in spirit. I just feel so beaten down right now and feel the aches with every movement.

But even as I sit in these ashes I can feel the presence of the Lord close to me. He has pointed out all of the Jesus that my grandmother showed me over the years, cultivating the Fruit of the Spirit in my life by witnessing hers.

He has been reminding me that we aren’t called to leave legacies of ourselves here on this earth. We are simply called to point others to look past us and see Him. And my grandmother did that very well.

I love you grandma and we miss you already!

Sincerely,

Leah