What is my role in all of this?

For the last couple of days, I have really been struggling with trying to figure out the question,

What exactly am I supposed to do??

Daniel is sedated and intubated. I can’t pick him up. I can’t comfort him when he is upset because he gets even more agitated. He sleeps for most of the day.

Usually I just sit here by the bedside, staring at the monitors, obsessing about numbers, freaking out when they suction him and he turns purple and his sats drop. I am going completely insane.

I want to be here so I can rub his head during the minutes that he is awake and looking for me. I want to be here so I can feel like I am involved in his care, so I can get to know his doctors and nurses, and so I can keep up with decisions made in rounds. I want to be here because I feel like a horrible mother when I am not here. I want to be here because he is my baby, my one-month-old baby who should be at home with a cute sticker on his onesie, posing cutely by some stuffed animal, cooing at me and being adored by his siblings.

I want to be here because I am still here even when I am not. I take him with me everywhere I go, and I worry about him every single second that I am not here.

But, to be honest, I can’t take the pain and stress. I feel so guilty saying that because I am not the one with a tube down my throat, with chest tubes sticking into my heart, with an angry, red scar down my chest that marks me for the rest of my life. I am just the bystander, the one who loves and feels completely helpless. Most of the time all I can do is sit here and watch it all unfold, and I can feel myself unraveling.

What exactly am I supposed to do– sit here and lose my mind, or leave and lose my mind?

This journey is a marathon, not a sprint. When Hannah was in the hospital for four days in March, I never left her side. But this is day 31, and we have many more to come. I am trying to learn how to manage my time here and trying to figure out my role. Unfortunately there is no right or wrong answer at this point. I sometimes wish there was a rule book with step by step instructions and expectations.

Daniel is still doing well, but he is really swollen. He isn’t responding to his diuretics like he should, probably because he has already had a surgery and has been on Lasix for a month. They can’t take him off the ventilator or remove his tubes and lines until his swelling comes down. Please pray that his swelling decreases. Pray that his kidneys will respond well even though he is being pumped full of medication.

We are so grateful for all of the answered prayers. Now that he is pretty much “out of the woods” with all the “big” things that could happen, it is much easier to obsess over the “small” details. These “small” details are really painful to see in real time, and they don’t seem very small to me, but doctors are assuring me this is all “par for the course” with a single ventricle baby who has just had the Norwood. We are on Daniel’s time, and only God knows how all of this will unfold.

I listened to “With Lifted Hands” by Ryan Stevenson earlier today. Part of the chorus is–

You rush through my veins I’m wrecked and I’m changed and My soul will sing

With every heartbeat in my chest Lord, I surrender all that I have The days yet to come, the days in the past I’m giving You all I am With lifted hands, with lifted hands

So much of all of this, for me, is submitting to God’s will. For me, the lyrics “I surrender all that I have” means surrendering my precious son. It means accepting that I am helpless to change his circumstances, and that, in reality, I always have been helpless. It just has taken this struggle to really understand the extent of my powerlessness.

I was reading about the transfiguration of Jesus earlier. I noticed that the words in Matthew and Mark are the same, but in Luke 9:23, it says, “If anyone would come after me, let him deny himself and take up his cross  daily and follow me.” 

What does it mean to take up your cross? When Jesus took up his, he was submitting to his father’s will above his own. He was enduring suffering in an act of incredible love for others, others who are undeserving in every possible way.

What is the significance of the word “daily”? For me, it is realizing that taking up my cross is a constant battle, a constant effort to submit to God’s will over my  own in service of others for the glory of God.

How do we know God’s will? He spells it out in the Bible. The verse that comes to mind is “Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you. (1 Thess. 5:16-18). I am rejoicing in all the blessings Daniel has received, and I am giving thanks for the opportunity to grow in my faith and learn to trust God in all things. 

I am praying a lot. I still have quite a ways to go before I pray “without ceasing,” but I’m getting there. Jesus himself said to “take up (your) cross” in Mark 8, but then prayed this prayer in Mark 14– “Abba, Father,” he said, “everything is possible for you. Take this cup from me. Yet not what I will, but what you will” (Mark 14: 36). Jesus poured out his heart to his father, yet still submitted. I pray fervently that Daniel will pass all this extra fluid so he can be extubated tomorrow. I pray that I can hold him by Friday. I pray that we can go home soon. But “not what I will, but what you will.” 

“With Lifted Hands” by Ryan Stevenson

Click on the link and watch the video. After he sings the song, he adds some thoughts about the song and his writing process. He says that he writes songs that are his own prayers, songs he needs to hear. That is what I am doing with this blog post. I am trying to process my feelings and remind myself of things I should know.