Updated: Sep 23
To catch up on the previous posts of our SCIDS journey click here.
Life in the PICU has a routine, an organized flow of activity; nursing shift change, a morning visit from the RT, rounds with the team, implementing changes. The big goal now is to get her off the ventilator, by decreasing the pressure and oxygen settings steadily, so that she will need the machine less and less.
During daylight hours, the nurses and RT’s are diligent to make those changes, often hourly and I feel the excitement of progress each time. Each decrease is a win, a loud cheer and fist pump inside me (and sometimes I actually do it). One step closer each time, to getting off the machine.
If only it was an easy, simple path to the finish line.
We have been slowly weaning off the ventilator for a day or two. I feel anticipation. Actually, what I feel is the desperation for this crazy journey to be over, for it to not to have even been real. Deceiving myself would only help me deny the raw emotions that flood my soul. I think it would help, but really it won’t. So I resolve to stop pretending.
We have an okay night, but she is more restless than usual. Her gymnast legs stretching up into the air, her hands in soft restraints so she won’t pull out all the tubes. The compassionate nursing sitting beside her, speaking soothingly to her, patting her, allowing me to try carrying on with my sleep on the lazy-boy chair.
The clock turns to 5am, her oxygen levels aren’t what they should be. She has a fever. Her nurse has to do the opposite now, and increase her pressures; it feels like she’s robbing my dreams. In the darkness of night, we make a move backwards. Is there a new underlying infection? Where would it be? Samples from every tube of her body are sent, antibiotics are started.
It takes all day and eventually we get back to where we started the day before. One setback at 5am and the day is spent trying to regain the ground we lost. I feel disheartened and frustrated.
The next night, we have a good night. Nothing eventful happens..until 5am....again. Her oxygen levels drop and we have to make changes, once again, in the other direction. I have to brace myself for the day ahead. Another day to try and gain back ground we already thought we had.
Watch and wait.
Some of the hardest words ever.
I could give in to despair and hopelessness. The lack of power and control do do anything is overwhelming me. But I don’t have to sit idly by. I don’t have to walk this journey alone. I share the struggle and see God move powerfully in response. People all over the world set their alarms for 5am Central Time, and commit to praying.
It was the last time we would have that 5am setback.
Months later, I would hear stories of how the Holy Spirit woke people up at 4:47am, just so they would remember to pray, some sitting in the hot African savannah with heads bowed to lift up our little girl, or conference calls among our mission’s leaders who turn from business to prayers for us.
I see so clearly now, the beautiful picture of Christ’s body. Bonded together in love and purpose.
It’s a tangible memory for me, some of the most difficult moments I have ever faced in my life. God didn’t (and hasn’t) made the path straight and paved. He brought people alongside of us, who persevered with us in our suffering, and committed to petition the Lord on our behalf. He made Himself richly known to us through the promises of His Word.
Jesus did not come into the world so that we could have a perfect life. He came so that we would have the best, fullest life possible. This means inside our sufferings, God is present beside us. It means that we feel the aches and pains of the world, and long for the world to be restored at His return. It means we look for the promises of God already being fulfilled in our lives and trust that one day there will be completion to His work in the world.
“I came that they may have life and have it abundantly.” John 10:10
Let’s be that people, the beautiful, messy body of Christ. United together in His love, and forging ahead for the purposes of His kingdom. Let’s not shy away from people who are suffering or struggling, but embrace them, bless them and be strong together with them, for His glory to be made known.
How have you experienced watching and waiting? Do you have a testimony of being humbled and blessed by the body of Christ?
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