(Note: I am posting this to *BOTH* of our CaringBridge sites, for Ezekiel and for Martha. No need to read multiple times.)

Well, here we are. Christmas. The end of what has been a very trying, humbling, difficult, and yet very blessed year for us. And so here I am (finally) releasing the Christmas song we do every year. You’ll see on the cover for this years single (O Little Town of Bethlehem) I included pictures from the depths of the difficulties with both Ezekiel and Martha. While obviously intentional, you might be curious as to why. Why include those pictures? Why not pictures of them well, healed, and happy? Why remind people of hard times and difficulties at Christmas time? Well, read on and perhaps my rambling will somewhat explain. But first, let me take a step back as way of reminder, or if you are new here to give you the full (albeit abbreviated) story.

It started at the end of 2022. Mr. Ezekiel was due, assumed to be perfectly healthy, and we were ready for a home birth. After Priscilla’s water broke, and many hours later no labor had began, so we were headed to the dreaded hospital. Come time to figure out what to do to begin labor in the hospital, it was discovered that he had breached himself at some point in the past few hours. So, now it was going to be a C-section (the first time, after 8 natural births.) Just before 1 am on January 1 (Happy New Year!) the C-section was completed successfully. But within an hour after delivery, Ezekiel and I headed to the NICU, while mama was in the recovery room. He was having trouble breathing, obviously laboring to do so, and furthermore his heartbeat was in the wrong place (towards the right-center of his chest, instead of on the left.)

After a long night in the NICU, we were given the diagnosis for Ezekiel: he had a Congenital diaphragmatic Hernia (CDH). A hernia in his diaphragm. And his intestines and a bunch of other internal things were up in his chest cavity, where they should not have been. So his heart was crowded to the side, and his left lung was underdeveloped. He was rushed to the Vanderbilt Children’s Hospital NICU, the closest hospital that is prepared to treat this condition. I drove there just behind him, and mama came the next day (as soon as she possibly could, having just undergone a C-section.) These were hard days. Really hard days. Not knowing if he would even survive, and if he did, what his life would look like, or how long recovery would take. But we were blessed with much care and many many prayers from our family, our Church, and many good friends (with quite a bit of overlap in those 3 groups). It was a struggle, but we did fight to trust God, praise Him, and even be thankful in midst of a storm. And (theme alert) God was certainly faithful and good to us throughout; even in and BY the difficulties.

This will be a War and Peace level post if I don’t hurry it up, so to summarize from that point forward. Ezekiel did better and stronger than every other CDH baby on the floor. He was ready and able for surgery quicker, able to come off of Oxygen and medications quicker, and able to go home quicker. What we were told would be a months long stay in the hospital clocked in at 3 weeks. Doctors told us he was a poster child CDH (in a good way). So we came home to recover, adjust, and resume/pick back up with ‘normal’ life. Side note: even absent the drama from this year, I’m not sure life with 9 kids will ever be classified as normal in our society 😁. And looking at Ezekiel now, other than a small scar on his abdomen from the surgery, you would not know he had such a difficult start to life. He is right where he should be size and development wise, a healthy and happy 1 year old.

So here we were, come nearly mid-year, life was back to 9-kids normal, and we were even having a music-night celebration at our home. The date was June 9th. Our sweet Martha had been having some weird pain in her face/mouth area for a couple of weeks, but nothing that seemed really serious. But this night, that changed. The pain came back, but was clearly more of a seizure this time. I sat with Martha in the living room with others alongside, as we tried to figure out what was going on, holding and praying for her. After this episode completed, we were just beginning the music portion of the evening with some praise and worship, and I prayed over Martha at the conclusion of this. She then sat fairly weak and tired the rest of the evening, just listening and watching, instead of running around with all her friends like the super active 8 year old she was. Little did we know at the time that this was the beginning of yet another very difficult road that would lead back to Vanderbilt Children’s hospital. But the signs were certainly there that all was not right.

The seizure activity increased from that point on, and 2 days later, we took Martha to the emergency room of Children’s hospital here in Knoxville. She was diagnosed with epilepsy, given medicine to prevent the seizures, had her first EEG, stayed overnight, and we went back home. The next week was really difficult, watching Martha get much worse. Losing her personality completely. Being in our bed almost constantly. Losing the ability to communicate. Her issues were NOT just seizures and epilepsy. We did go back to the same E.R. after not getting any answers about all of this, and they decided it was a reaction to the seizure medication, and prescribed another one.

After a few days with still no improvement, and her condition continuing to worsen, we knew something was very wrong. And the doctors in Knoxville were not helping. Given our experiences at Vanderbilt being very positive in their care for Ezekiel, we decided to head there. This was on June 23rd. We drove to their ER, hoping to be admitted and be able to figure out what was happening. Perhaps get an MRI which Knoxville wasn’t scheduling. They did get us in the hospital, do the MRI and other tests, including a very difficult lumbar puncture procedure. After seeing her, and running tests, they did admit us as well. We at least had hope to find out answers.

This ended up being our second 3 week stay in Vanderbilt hospital. It included many many hard nights with a little girl barely eating, talking, or able to function. Many different medication and treatments. But they were able to come to a diagnosis, and from that know the path of treatment. Martha had Anti-NMDA receptor auto-immune encephalitis. Basically, her own immune system was attacking her brain, causing swelling, and that was the cause of the seizures and all of the other neurological symptoms. This was another very hard period. Seeing your little girl disappear what seemed like overnight, not knowing if you would get her back, not knowing why. But again, trusting, hoping, praying, and even thanking God. And with many hard times including a seizure so bad the entire wing of the hospital was coded and every nurse and doctor rushed to the room, many many catatonic episodes including needing to physically restrain Martha from hurting herself or others, many sleepless nights and hallucinations, she did begin to improve. She started to be able to move and walk around more, and communicate a little better (but not talk still). She started treatments, and we were able to go home to continue her recovery there, with infusions happening at Knoxville. And over the next few months, we got our Martha back. Her final treatment and infusion was on November 29. And you wouldn’t know from looking at Martha or talking to her now that anything happened at all. She is running, climbing, bike riding, playing, reading, learning, and completely healed.

And there you have the readers-digest version of our year. Which of course includes a lot of just recovering and adjusting to life as it changed, our 8 other children managing life absent their parents for 6 weeks of the year, not to mention serving, working, homeschool, gardening, etc…..LIVING.

To wrap it all up; that’s why Martha and Ezekiel are on the cover, and specifically why they are pictured so at the depths. Because we don’t want to forget. Don’t want to forget what we have been through. Don’t want to forget what God has taught us, done in us, and done for us.  Don’t want to forget all the incredible ways we were cared for and provided for; all of the incredible love we have seen and felt.  We’ve learned and grown so much through all of this and don’t want to forget.  Also, I wouldn’t want any of it to change.  Even though it was SO hard.

This Christmas, enjoy this reminder of these things as you listen to our song offering for this year.  As Martha sings of silence, which she endured so much of this year.  As Ezekiel chatters at the end, strong and healthy.  As all of our children (even the adult aged, and nearly adult aged ones) sing of the truth of Christ and Christmas.

And now, I will leave you these 2 passages of Scripture that I think together summarize a lot of what we have seen and learned very well:

Isaiah 55:8-9
8For my thoughts are not your thoughts,
    neither are your ways my ways, declares the Lord.
9 For as the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.

John 1:5
5 The light shines in the darkness, and the darkness has not overcome it.

Merry Christmas!

Love,
The Manns