Today we got up at 5:30 am, started our normal routine of getting showers, kids up, dressed and fed, Drake and Vivian’s meds and food made for the next few hours. Then Drake and Vivian up, cleaned and dressed for church. We serve weekly in the children’s wing so we try to go to the early service so we are freed up to serve our sweet kiddos at the 11 o’clock hour.
Everyone in our home has a job to do on Sunday mornings as it takes full participation to get all seven of us up and ready to walk out the door at 8:30 am, with all Drake and Vivian’s medical needs in tow.
Today we were running a few minutes behind due to getting Vivian up and her seizures coming every 5-7 mins. Sometimes mornings are the hardest for her and Drake, as their bodies do not regulate properly from their mitochondrial disease and night times came be a hard balance between giving meds and allowing them to rest and sleep.
We did all the normal steps of precaution, and we have a certified skilled nurse that volunteers her precious time every week to sit with Drake and Vivian so Eric and I can sit together in service under solid biblical preaching. It is amazing how that one hour of consistent time can really refill our empty buckets. Eric and I were praying she would settle as seizures are our normal life with NKH, but this am, the seizures were causing her to throw up which really complicates keeping nutrition down. Our disease does not have solid treatment yet, that is what we are fighting for, and many of you are helping us fund here at the Drake Rayden Foundation.
We all prayed over her, loaded up the car, and decided that we would all go to church as a family, and Eric and I would sit with Drake and Vivian in one of the spare rooms upstairs at church during service, so we could monitor Viv, and the bigs could still go be apart of their small groups. Then we all could come back together to lead the kids worship service at 11. Serving weekly fills our cup as well. Having all our babies at church when our mornings and days are not easy is something Eric and I are committed to modeling each week. Does it take an act of congress to make it happen....yes. Is it eternally important for our children to see ALL of us together, worshiping as a family, regardless of how hard the morning/night before was...a thousand times YES.
This morning we had to turn around about five minutes after we left the house. We had Vivian’s pulse ox on her foot to make sure we could monitor her heart rate and oxygen with the seizures coming as frequently as they were. A few minutes into the ride the monitor alarms started going off and Birk looked down to see the red number (kids know oxygen is red, and green is heart rate) sitting at 85.
Eric immediately pulled into a neighborhood, got out of the car and went to the back to get the suction machine out. I told Birk to get in the front seat as I got out and went to the drivers side ready to drive as soon as Eric got her stable to transport. Eric deep suctioned Vivian to help with some of the secretions that come with seizures and was able to get her to cough which naturally brought her O2 back up to 97. We all are prepared for the emergency settings we have to jump into with caring for two siblings living with a terminal disease, but I would be lying if the adrenaline doesn’t shake us all when the crisis passes.
Eric stayed in the back seat watching her vitals and positioning her to keep her airways clear, as I started to drive us back home to allow us to get out the supportive equipment which we have set up at our home. We can handle seizures, even some throwing up in public with the children, but when their oxygen starts to shift it is way too risky to not be at home with all our support.
As I was driving home, the weight of defeat set in pretty heavy. Going to church always fills our cup. Sitting together in service, and serving our precious kiddos each week, always starts our week off with a feeling of fullness from the Lord. Being able to go to church as a family is something we unknowingly took for granted before Drake and Vivian were born.
We pulled into the driveway that we had pulled out of just a few minutes before, and started unpacking all the things we had spent an hour packing to get us ready for the day. I saw the kiddos faces of defeat, and knew exactly what they were feeling, as Eric and I too feel it every time we have to shift due to what this sickness has taken from our family.
As we walked into the house and got Vivian’s beanbag set up to lay her in it, I felt Holy Spirit whisper like He does so often...”Fight for it....I didn’t make you to give up so easy....Rise up child and fight for them!"
So as Eric went to the car to get Vivian out, and as the bigs were slowly trickling in, I grabbed my lab top and started searching for the church’s website. We host the service live every week and between that option and the ability to cast it onto our big screen, we were going to “church” hell or high water!
I yelled for the kids to get their bibles, kick their shoes off, and meet me in the living room. Eric had Vivian in and was getting her pulse ox reconnected and fluids running in the living room as he had picked up on the mission. I went to the car, got Drake out and Birk who was sitting with him, and off to the living room we went.
We sat in the living room today, in our Sunday best, worshiping, listening, opening our bibles to read God’s word and allowing the Holy Spirit to speak truth over all the lies of the enemy through a guest pastor’s preaching.
What started out as hard, and heavy, and the fear of disease and uncertainty became good, from a trustworthy God, and a faith-filled sermon that brought edification in our children and our marriage.
What the devil tried to rob from our family, we fought for and turned for God’s glory in our home.
We don’t always get things right, many days if Eric and I are honest, we are terrified we will mess it up and miss God’s mark. But today...we fought back against the spiritual warfare, we locked arms, and we held the line. I think regardless what unforeseen circumstances you may be facing in your home...hold the line..together.
God has given us a spirit of courage and strength, not fear and defeat to fight the good fight for our good and His glory...
Keep fighting...
To God be the Glory...
Amen.