This week we were pleasantly surprised by two bonus snow days with dad! Snow days are always nice from a medical standpoint as they give me a guilt-free cancellation for therapies. The monotony of our weeks can get old so justified reasons to skip are always welcomed!
We live in a very mountainous area of Tennessee and since heavy snow is rare, the roads are not treated like they are in the north. It is always highly recommended by news stations that if you don’t need to be out then stay home! We loved the suggestion and spent the day tucked in the house as a family. Jake and I even tackled another escape room and finished in an hour and a half! Progress haha.
A friend took this photo from on top of one of the local mountains and I thought it was beautiful enough to be blog worthy.
Our miracle Malachi turns 6 years old tomorrow (Monday)! He is very aware of birthdays and is really looking forward to the day. We have a jam packed Monday so we decided to celebrate on Saturday. We took the boys to see the new Mary Poppins movie and thankfully we had the theater all to ourselves. It was Levi’s first movie and he did about as well as can be expected for a one year old. Malachi on the hand loved the experience. We sat in the handicap seats which are close to the screen and he tried very hard to watch most of the movie. Since he can’t see well I try to narrate things to him and he was very into any of the action scenes.
He received some birthday money from some family members so we asked him if he would like to go pick out a birthday present. His eyes lit up and he eagerly signed YES so off to the store we went. We walked through all of the toys, books, and movies asking Malachi about different things we thought might interest him. He genuinely loved the experience and was so focused on picking out toys.
We narrowed it down to a little kid dinosaur educational toy and a big boy scary dinosaur that roars when it is motion activated. He thought long and hard and finally signed NO for the educational dino and a big YES for the big boy one. He also picked out two new Paw Patrol movies. I think the excitement of shopping for the toys was even greater than the gifts themselves.
Sometimes I forget how aware and intelligent Malachi is, and moments like our shopping trip remind me of how typical Malachi is. He has some strong opinions, a big imagination, and such a sweet heart.
And I was reminded this week of his ability to be a master manipulator. The boys go to work each week with me (Mondays, Wednesdays, Fridays) and Levi insists on sitting in the big chair with Malachi. They were playing so sweetly I got out my camera to take a few pics and caught this hilarious sequence of events.
Picture 1- Levi was playing gently and everyone was happy.
Picture 2- Levi pulled Malachi’s hair before I could stop him, and it made Malachi start to cry. Levi recognized that he hurt Malachi’s feelings and hugged him.
Picture 3- Malachi realized that Levi would hug him when he cried and loved his new power over Levi.
Picture 4- Levi checked to see if Malachi was still crying and Malachi tried to pretend like he was still a little sad (but was definitely fine).
We have been tackling some big changes with Levi this week. Since Levi came home from the NICU he has slept next to me in his Rock N’ Play. It has a self rocking feature and plays music, but the best feature is that it is inclined (for his reflux). It has always brought me peace of mind as it keeps him tucked in a safe, cord managed position.
But when he sleeps flat he is much quieter with his breathing. He has a sleep study next month and we want to set him up for as much success as possible so we broke out the pack and play. It has proven to be quite the challenge, most nights this week ending in stand offs with him sitting up and staring at me while saying “momma” over and over again. But each night takes less time than the last so we are making progress.
The cord management stresses me out so I don’t feel comfortable falling asleep until he is completely asleep. I have been running it through his onesies to keep it from getting wrapped around his neck but he sleeps with three wires attached to him and lots of possibilities for danger.
He has been working on a new smile. And getting into EVERYTHING he can get his hands on or in.
The trauma of Malachi’s birth is still a struggle for me, but this birthday is proving to be exceptionally more difficult for me than normal. It was shortly after kickoff on Superbowl Sunday when I headed to the hospital with Jake, not realizing that my son would be born that night. Scenes from that night play over and over again on my head on repeat, especially with today being eerily similar to that Superbowl Sunday.
This photo was taken the night before Malachi was born. I was 24 weeks along.
I know that many of you have been with me from the beginning and could likely tell the story of that night as best as I can, but the therapy of writing these blogs helps me through tough nights like this one, so just bear with me.
There was so much confusion. So many tests. So many questions. Malachi’s heart rate was being monitored and he was still doing just fine.
Then in an instant everything changed. My doctor walked around to the right side of my bed and reached out to hold my hand. I remember all of the false confidence I was storing up poured right out of me as I watched his eyes while he spoke. He explained that he thought I had a placental abruption and that I needed to be transferred to a hospital with a higher level NICU. He explained that Malachi was going to have to be born that night…words I never saw coming. I said “But he is too little…will he live?” And the doctor squeezed my hand a little tighter and said “If he survives the delivery there is a 50% chance he will survive. But we need to get you to the hospital downtown immediately.”
I was loaded onto an ambulance, Jake followed behind in the car, and a team was ready for me when we arrived. So many medical professionals were gathered in the room and started trying to figure out why I wasn’t showing the clinical signs of an abruption (bleeding).
And that is when it happened….Malachi’s heart suddenly stopped beating. The doctor attempted to move the bands around to find the heartbeat but after several failed attempts she said “Try it one more time.” I could sense the tension in the room rise and got a sick feeling in my stomach. After a few more seconds she said in a loud commanding voice “GO GO GO” and in an instant all the cords were pulled from the wall behind me and we raced out the door.
The clock above the door showed it was almost midnight. Malachi was born just 4 minutes later via emergency c-section. I will never forget the look on Jake’s face as we locked eyes one last time as I left the room.
We raced down the hall at a full sprint and I watched the ceiling tiles fly above me. The words from Job played in my mind and I prayed “The Lord giveth, the Lord taketh away, blessed be the name of the Lord.” Over and over again I prayed these words.
We made it into an operating room. Everyone was so busy prepping that they asked me to slide myself onto the operating room table and stretch out my arms. The doctor visibly chose where to make her incision and picked up the scalpel. She said “Ready to cut!” and started to bring it down towards my stomach. I spoke up and said “I will do my best to stay still but I can’t promise I won’t move…” and she screamed “Somebody knock her out!!”.
A nurse ran over with an oxygen mask and her final words before I blacked out were “You need to breathe this in as fast as you can…your baby’s not breathing.”
I woke up in a small room with a nurse by my side. She went and got Jake and I remember trying to make eye contact with him as he walked into the room, desperate to find out the outcome of Malachi’s birth without having to speak of it. Jake was fighting back emotion and stared at the floor tiles as he walked over, and my heart sank. I asked “Is he alive?” and Jake nodded yes. But his body language told me I shouldn’t ask any more questions, as my heart might not be ready to handle the answers to them.
Malachi’s birth was a result of a placental abruption that had been internally bleeding for several days, unbeknownst to me. We had even been to the doctor for a regular baby checkup the Thursday before and everything looked great. The doctor always boasted “You are the healthiest pregnant woman in my practice.” An honor I always wore proudly. I drank all the water, ate all the vegetables, and followed all the rules.
The massive blood clot that was discovered during that emergency c-section almost took my life as I lost a significant amount of blood. I was in the hospital for several days receiving blood transfusions and trying to heal from a very quick and aggressive vertical c-section. Malachi was born without a heartbeat and required 15 minutes of CPR on his 1 pound 12 ounce body. He was taken to the NICU, wheeled past Jake for a brief few seconds. I didn’t get to lay eyes on my firstborn for three long days. The pain of those days is something that I will never ever forget.
Early the next morning I asked one of my nurses how Malachi was doing, desperate to hear a good report. She replied “It doesn’t look good.” and left the room. I processed the thought that I may never get to meet my own child on this earth. And it broke my heart. Every time the door opened I braced, assuming they were coming to tell me that my son had died.
The ups and downs from his 4 month NICU stay were overwhelming and strengthened my faith in so many powerful ways. We learned during those hard times full of bad news to rely on God’s strength to carry us. I realized that the control I thought I had over my life was simply an illusion and that I needed to rest in the will of God.
Every day since that night has been a challenge, a test of my faith. Through Malachi I have learned what hope truly looks like. We have known disappointment, we have known true fear, we have known what it is like to pray that your son lives to see just one more day. We have believed in miracles, mourned over not getting them, and then chosen to believe in them yet again.
We have learned that God’s grace is amazing. And how generously He wants to give it to us. We have learned how important a RELATIONSHIP with God is. Not just knowing who He is or what He can do. We have learned to experience God.
I share this poem every year on Malachi’s birthday; it is something I wrote for him a few years ago and it helps me refocus as I fight through all of the hard memories that keep themselves stored in my head and heart from that night.
It was a breathtaking day in heaven as the father summoned the Son.
He wanted to tell him firsthand about something wonderful he had done.
He took His commanding finger and pointed down at the earth.
Jesus looked and saw a young mother, seconds away from giving birth.
“Why, Father is she so frightened? Shouldn’t she be filled with joy?
Shouldn’t she be celebrating the birth of her baby boy?”
“She worries about his future” was the Lord’s simple reply.
“She doesn’t know my plans, and that the child will live and not die.
She doesn’t see the footprints that the small boy will leave in his time.
She doesn’t know that his purpose on earth is not for her glory but mine.
The boy has a job to do, as I will slowly start to show.
He is my mouthpiece,” said the Lord “And everywhere he treads I will go.
Some children I create for the joy of the world, but this one is different you see…
This one has been crafted to be distinct; he has been crafted to be used by me.”
Jesus nodded as he understood the truth in God’s mysterious ways.
He beamed as he remembered that it was his Father’s job to number the boy’s days.
They watched together as the boy entered the world and took his first desperate breath of air.
Then God chose his strongest angel warriors to be sent to watch over his care.
Every day the Father looks down with love at his uniquely crafted son.
And every day He is reminded again that he practiced perfection when he created this one.
What some may say is defined as “different” do not know the true meaning of the word.
But each time I gaze at you, my son, I see the flawlessly strong hand of the Lord.
You are different, you are beautiful, you are one of a kind.
You are strong, wise beyond your years, and you are a invention from the Master’s mind.
How can I be sad, how can I lament this special, heaven sent gift?
All I can do it thank the Lord that His plan for you has me in it.
So share your story and live your life with joy, love, and grace.
And keep on smiling, my sweet Malachi, with a brightness that has seen God’s face.
It is just after midnight and the birthday boy and I are watching Bubble Guppies while he tries to fall asleep. He likes to listen to the keyboard while I blog on Sunday nights. I just leaned over and whispered “Happy Birthday” in his little 6 year old ear and the joy on his face brought tears to my eyes. What a blessing this boy is in our lives.
On this birthday we will choose to find all of the joy and continue to fight against my nature to focus on memories. I will let my heart mourn in private when it needs to mourn, but I want Malachi to experience joy today….the same joy that heaven experienced on that special night he was born. I am confident he spent some time in the throne room of God that night, being comforted by the angels as earthly hands brought him back to this earth.
Our life is a uniquely beautiful one. Thank you for giving me the chance to share it with each of you.