Superbowl Sunday always brings about an array of emotions for me. We were actually hosting a Superbowl party the night that Malachi was born. Today as I prepped to have the teens over for a party I couldn’t help but flashback to that night and the emotions surrounding it.
This week our miracle Malachi will turn 7. I will save my sappy post about him until next week, but I hope that over the past seven years that Malachi’s life has made an impact on your life in the same way has has impacted mine.
On Monday Malachi went to school and when I went to pick him up he seemed sad. The teacher told me that he was having an “off day” and wasn’t acting like himself. He didn’t have sick eyes, the first indication he is getting sick. And when we got to the car he perked right up.
At dinner I asked him if he had a good day at school and he signed “no”. I asked him if he had been happy or sad at school and he signed “sad”. I then asked him if someone had been mean to him and he signed “yes” and my momma radar went off! I asked if it was an adult or one of his teachers and he signed “no”. We continued the questions and answers until we narrowed it down to another student being mean and getting into trouble for it. He also signed that he did not want to go back to school the next day, which is very uncharacteristic of him.
I planned to talk with his teachers about the incident but later than evening I saw one of his teachers so I asked her if there had been an incident that day. She thought about it and said that yes, there had in fact been a scene caused by another student but it wasn’t directed at Malachi, but rather to the whole class.
Usually when kids get into trouble Malachi laughs, so I asked her if he had laughed and she said no. I think whatever happened in the classroom must have scared him pretty bad. But I was so incredibly proud of him that he was able to communicate so much to me and lead me to the problem! He didn’t get to go back to school for the rest of the week due to appointments but maybe our time away will have been a much needed reset button for him.
Malachi has been very vocal this week in his own ways. This was the result of me pausing the Lion King during one of the intense scenes to answer the phone at work. That’s some serious drama!!
Speaking of appointments, Levi’s big neurology appointment happened on Wednesday morning. To re-cap, Levi was born at 34 weeks via c-section and was squeaking and struggling to breathe. He was placed in the NICU and went through a series of tests and procedures to find out the cause of the squeak, eventually leading us to his diagnosis of bilateral vocal cord paralysis.
When we were doing all of those procedures to find out the cause we discovered a few small spots of damage in his brain and it was thought he had at least one even of oxygen deprivation severe enough to cause brain damage. We were quoted that he would have a 25% chance of having cerebral palsy.
We tucked that issue out of our minds as much as possible while we tackled the breathing issues. Once those were under control we met with a neurologist to discuss the damage and he requested that we get another MRI to see how much has changed since the previous scan. We had the scan done just a few weeks ago and needed to meet with the neuro to discuss the results.
We know the neuro well as he has been a big part of our seizure journey with Malachi. I knew that within two minutes he would unravel Levi’s results so I tried my best to not get too anxious and waited patiently through the opening questions. He then pulled up an image of Levi’s brain and showed us that he now has 5 patchy areas of brain damage and his ventricles are slightly larger and misshapen due to scarring (areas of the brain that have died- they are the bright long lines on the outside edges of the black ventricles).
To help give you more of a visual, here is a side by side comparison of Levi’s brain on the left and a unaffected brain on the right. In this comparison you can really see the difference in the shapes of those black ventricle areas.
He said that based on the images of the damage, he is genuinely surprised to Levi functioning as well as he is. I guess that is a praise report hidden inside of a disappointing report! He said if he were to see this image and not know Levi he would be looking for a child that is much more physically affected.
Based on the MRI images and his clinical exam, Levi has been officially diagnosed with diplegic cerebral palsy. His CP is hypotonic meaning he is loose and floppy as opposed to his muscles pulling too tight (hypertonic). Big brother Malachi is a mixture of both hypo and hyper so we are familiar with both and truth be told we would much rather have Levi be hypotonic than too tight. Being too tight causes things to dislocate and lots of pain.
Levi’s main areas of his hypotonia are in his core, his legs, and his ankles. The only “treatment” is frequent therapies to help build up his weak muscles.
The neuro thinks that most of his brain damage is a result of his premature birth at 34 weeks as opposed to having several events where he didn’t get enough oxygen. Hearing that piece of the puzzle made me feel a bit better for some reason.
I left the appointment feeling glad to have some answers but sad they weren’t more encouraging results. He told me to continue to watch for seizure activity as it isn’t completely out of the realm of possibility for Levi.
Trying out brother’s chair just for fun
Levi’s diagnosis doesn’t really change anything for us. He will start being monitored several times a year in the cerebral palsy clinic and continue in his therapies. He will still struggle with balance and strength, but for now it doesn’t seem to be slowing him down.
To be completely honest, the temptation to wallow in grief has been on the forefront of my mind this week as I process our appointment. I keep thinking to myself, “Seriously ANOTHER CP diagnosis?!?!”
The devil has tried to take my mind towards the future for each son, which is a dangerous route to travel. Regardless of the longevity of life, each one of my boys will have more struggles to face, more physical pain, more doctors appointments. The inability to fix their brokenness sometimes sucks the breath right out of me.
When I start to mentally go to these dark places I have to open the Bible to refocus. One particular scripture kept coming up…”The Lord will fight for you; you need only to be still.”
To be raw and honest, I am tired of fighting. I am tired of trying to fix things on my own. I am exhausted by the pressure that I place on my shoulders regarding these boys.
Sometimes we forget that God is fighting our battles for us, and we only need to be still.
So as I sat in the car on the way home from the hospital that morning I tried to quiet my mind and be still in the presence of God. The battles aren’t mine to fight, they are His.
Later that evening I pulled up the scripture and read the context around it, something that is SO IMPORTANT to do when studying the Bible. Those words were spoken by Moses to the Israelites as they stared at the Red Sea in front of them and heard the chariots of the Egyptians barreling down behind them. They were panicking as they looked at their circumstances, feeling utterly hopeless.
When I read the story I noticed some things I hadn’t seen before…
God’s response to the Moses: “Why are you crying out to Me? Tell the sons of Israel to go forward.”
They were staring at a literal sea blocking their way. Panic had set in to their souls, and God’s simple response was “go forward”. And when they obeyed, it was THEN that God allowed the sea to part and for their feet to walk on dry land.
How many times do we find ourselves paralyzing ourselves in fear over a situation rather than stepping forward in faith?
As God continued to lay out His plan to Moses about the way he would part the Red Sea and lead the Israelites to safety, I noticed one more thing…
In Exodus 14:18 God says “Then the Egyptians will know that I am Lord.” As I read that this week I had this much needed reminder pop out at me.
Here God was performing a miracle that would lead His chosen people safely out of Egypt. But the miracles wasn’t for them. It wasn’t to re-affirm the Israelite’s faith in God, rather it was for the enemy looking in.
Sometimes God uses our situations, our trials, our circumstances to reach a group that might not be reached in any other way but by watching us turn to God in those moments.
Maybe the struggles my family continues to go through serve a much bigger purpose than only bringing the four of us closer to God. Sometimes we get caught up staring at the sea in our way. We forget that God sees a much broader picture and may be using that sea to allow an audience to catch up with us, so they too can watch the miracles unfold.
Please continue to pray for our family as we navigate this life. It requires a wisdom that we don’t possess, so pray with us that God continues to give us pieces of His infinite wisdom and peace.