365 days ago I was in the emergency room with Malachi, waiting (very impatiently) for an ICU room to open up. The pipes had burst, flooding the hospital with mysterious brown water and we were both shivering due to the extreme cold in the building due to broken furnaces. He was put on 20 liters of oxygen and we spent our Christmas Day trying to not remember that it was Christmas Day.
Two years ago I was in that same emergency room with Levi processing his new epilepsy diagnosis.
We have spent dozens of holidays in the hospital, and if I focus on that too long I can feel bitterness growing deep within my bones about our loss of “normal”. But these valleys have changed us in profound ways. They have taught us to look for those who are hurting…they are ever present, but sometimes our eyes easily overlook the hurting. These valleys have taught us what true thankfulness looks like. And re-organized the priorities in our life.
Our valleys have proven that normal isn’t always better. And while we have experienced unimaginable pain we have also bloomed flowers that we never knew existed.
And it is that truth that hits me hard today. It is 1:00am and Malachi and I are the only ones still awake. As I glanced at our Christmas tree I couldn’t help but feel overcome with thankfulness. I whispered to Malachi and told him it was officially Christmas morning and he had stayed out of the hospital this year, and he responded with uncontrollable giggling and a big, intentional hug.
Life updates time! We have plenty of those for you.
Let’s start with Levi.
Levi had another dreaded sleep study last week. This was at the request of his Chattanooga pulmonologist as well as his Cincinnati ENT and pulmonologist. Levi’s vocal cords are paralyzed so he is always obstructed. Sometimes at night he has a hard time passing air through his airway and retains too much carbon dioxide, which is unsafe for the body. His nighttime breathing was very scary before his August surgery, but markedly improved after.
We have never successfully completed one of these studies so this time around they prescribed a sedation medication. The side effect of it is that he won’t enter REM sleep, slightly skewing the results of the test, but it still gives a snapshot of how well he is breathing at night.
I waited until an hour before we left to tell Levi and we sat down and watched videos, studying the process and answering questions. He was physically shaking as the tech glued on the wires but he was so incredibly brave.
And the meds absolutely did their job! Levi was asleep by 8. He woke every hour in a frantic rage, trying to tear the wires off, but by 2:30 they had the data they needed and discharged us. I am so proud of this boy!
The pulmonologist called the next day to let us know that “no clinically significant apnea was noted”. This was genuinely a shocking result, and we are all very thrilled! He dropped down to 89% oxygen saturation but never long enough to be clinically significant. Praise the Lord!
They do want to run some blood work to investigate some of his sleep patterns but he is safe!
Now time for Malachi updates.
Malachi woke up giggling on Vanderbilt day. He loves going to these appointments, and this one was extra special because I brought Levi along for the first time since infancy. He was so proud to show off “his” hospital and Levi fed right into that with his oooohs and ahhhhs at the size of Vanderbilt.
Malachi started with imaging of his hips and spine. Then we met with his orthopedic surgeon. Malachi’s hips are both dislocated pretty severely but if they are not causing him pain we will not intervene. There won’t really be any changes there considering they are both the worst that they can get as far as dislocations. His ankle and feet seem to be holding steady and his AFOs (braces) are doing their job fighting the cerebral palsy that attempts to fold his feet up. This portion of the appointment was an annual formality.
Next we met with the spinal surgeon. Malachi’s degree of spine curvature last year was 35 degrees and this year it has increased to 45 degrees. The surgeon typically likes to intervene when it passes 50 degrees but Malachi’s intervention options are limited. He is medically fragile and the only realistic solution that we have is to fuse his spine. This is a pretty big surgery and one we would like to continue to avoid as long as possible. The surgeon definitely wants to wait until he grows a little more and next year we will be doing some bone age tests to determine how much more growth to expect. So for now we continue to watch and wait.
After his appointments I took the boys over to the Rainforest Cafe, our annual tradition after these appointments. We were seated next to the gorillas and Malachi was so happy. After dinner I let them each pick something out at Five Below. Malachi is now into pranking people so he settled on some fake dog poop and tiny hands. Levi chose a skateboard which will probably “go missing” until he is a little older 🙂
We have been so incredibly busy with appointments lately and continued insurance battles. Since the last update we have had no less than 6 meetings with the state and gobs and gobs of paperwork hoops to jump through. But I am so entrenched in the chaos that I can’t give up now.
Levi had a Christmas concert, opened an early playground piece from grandma, and has been a rock star at school.
And Malachi has been in such good spirits lately. His seizures are still pretty intense right now but he is handling life with a big smile on his face. He laughs and laughs at Levi’s many antics.
One of our sweet friends brought Malachi an amazing present. It is a little hard to explain so bear with me…but it is a chair pad for gamers that allows you to feel the vibrations of the game. We were able to hook it to our television so when Malachi watches movies his chair shakes with each explosion or boom of the bass in a song. It has a dial for different levels of sensitivity and he loves being able to use another sense while watching his shows! He is blind and unable to see the shows so feeling them is the next best thing!
Here is a link if any other special needs families may be searching for something similar: https://www.amazon.com/dp/B0BQSTNFB1?ref_=cm_sw_r_apin_dp_HP85B75Y0EBEZ65A49XJ&peakEvent=5&dealEvent=1&language=en-US&fbclid=IwAR1fHW2V0f-TPdh4Ck2HiBTeA6mJaoNtuRMQ1bFWjpw553zr0w8qUy8AWDw_aem_AfOilBUPzeq-Strxq-t-mx1nBdVXwaea5Nl7diThA251zcNwMQu01GY-G_GqRVKrDx-v97ALrXTyrMRE5sgmsEZN&th=1
We are having to face the reality that Malachi is growing up. He will be 11 in about a month, which is just so mind blowing!
So now time for some raw emotions talk.
I firmly believe that when you become a mother the story of Christ’s birth hits a little different. The power and message of the story doesn’t change, but I start to think a whole lot more about the details, and particularly about the heart of Mary.
**Disclaimer that probably isn’t necessary, but here we go. I do not want to detract from Christ’s birth and make it about my son. Please don’t read this as a comparison between myself and Mary or of my children and Christ and their callings. So many times when I authentically share my raw emotions I recognize how spiritually shallow they sound on a screen. I am aware of this, but this is my safe space to write and trust that God will complete/clean it in your hearts.**
This week I read a small sentence and the words have played over and over in my head all week. Jesus was “a baby born to die”.
When the angel appeared to Mary he didn’t tell her this. He didn’t reveal the entirety of God’s plan for her son. He didn’t tell her about the suffering her child would endure, the ridicule He would face, or the shortened life her sweet baby would live.
Instead the angel told her that she was favored, that the Lord was with her, and to not be afraid. Further they told her in Luke 1:31-33:
“And behold you will conceive in your womb and bear a son, and you shall name him Jesus. He will be great and will be called the Son of the Most High; and the Lord God will give Him the throne of His father David, and He will reign over the house of Jacob forever, and His kingdom will have no end.”
But this week I keep wondering, what if the angel had told her the entire plan? We often sing the song ‘Mary did you know’ And I think it is safe to assume that she didn’t.
What if God had shown me the full story of my boys from the beginning? How would the weight of that knowledge have impacted this journey and my faith?
There is an adaption of “The Miracle of Christmas” by John McArthur that is floating around the internet on this very topic. And this part of the reading stuck with me:
“Here’s the side to the Christmas story that isn’t often told: Those soft little hands, fashioned by the Holy Spirit in Mary’s womb, were made so that nails might be driven through them. Those baby feet, pink and unable to walk, would one day stagger up a dusty hill to be nailed to a cross. That sweet infant’s head with sparkling eyes and eager mouth was formed so that someday men might force a crown of thorns onto it. That tender body, warm and soft, wrapped in swaddling clothes, would one day be ripped open by a spear. Jesus was born to die.”
Mary didn’t know that she was having a baby that was born to die. His purpose had already been established by God on this earth. His timeline had already been determined. His testimony and impact on this world had already been beautifully authored by God.
Mary was given a calling within her son’s calling. Each role had a uniquely called purpose and plan, with the end result of both bringing glory and honor to God.
As I have looked at my sweet Malachi this week I have wondered if those same five words can be said about my son.
Is he too a baby born to die?
And as I process the physical emotions that horrible sentence produces, I also recognize the love of the Father within them. I am thankful for His tender mercies and how He walks that winding journey with us, already knowing the destination point and gently guiding us to it.
I am so honored that God hasn’t revealed Malachi’s story to me, but rather He has given me the opportunity to experience it alongside of him. He has given me a calling within a calling.
Through each new trial, diagnosis, and hospitalization my faith and hope in God and His plan grows. And while there are times I long to see more of the Master’s plan for Malachi, I am grateful for the hidden. Because the hidden produces hope and faith.
Jesus’ birth was step one in a marvelous and glorious plan. Mary’s job was to love that baby. It wasn’t her job to protect Him from suffering and death; that was a cup that had already been prepared for Him.
So this Christmas I think about that baby that was born to die. And because of His birth, life, death, and resurrection I am able to release the question I find myself asking, “Was my baby born to die?”
Because of Christ’s death on the cross and resurrection I am able to surrender the fear that surrounds that chapter of Malachi’s life, whenever it may come. I have a living hope that there is an even better life for Malachi beyond this earthly one.
I know this is a long scripture, but if you need a devotional tonight I encourage you to read these truths.
Romans 8:15-25 For you have not received a spirit of slavery leading to fear again, but you have received a spirit of adoption as sons and daughters by which we cry out, “Abba! Father!” The Spirit Himself testifies with our spirit that we are children of God, and if children, heirs also, heirs of God and fellow heirs with Christ, if indeed we suffer with Himso that we may also be glorified with Him. For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us. For the eagerly awaiting creation waits for the revealing of the sons and daughters of God. For the creation was subjected to futility, not willingly, but because of Him who subjected it, in hope that the creation itself also will be set free from its slavery to corruption into the freedom of the glory of the children of God. For we know that the whole creation groans and suffers the pains of childbirth together until now. And not only that, but also we ourselves, having the first fruits of the Spirit, even we ourselves groan within ourselves, waiting eagerly for our adoption as sons and daughters, the redemption of our body. For in hope we have been saved, but hope that is seen is not hope; for who hopes for what he already sees? But if we hope for what we do not see, through perseverance we wait eagerly for it.
Thank you for listening to my ramblings and for checking in on my boys. Please continue to pray health over our family; Levi started coughing tonight which always sets our radars off.
Merry Christmas to each of you and may your focus remain on God’s goodness this holiday season.
Sincerely,
Leah
