One month. We’ve been here one month.
It’s not completely shocking to still be at the hospital, but when we were so close to finally leaving, only to take a step backward in recovery, it has started to feel claustrophobic. Like we’re never going to escape.
Especially yesterday. Yesterday, Maddie had not just one but two tubes placed back in her chest cavity. They are smaller than the previous ones placed in during her Fontan— almost like straws– but they still hurt. They removed several hundred mL of fluid from her left pleural cavity, as well as some air from the right.
She was scheduled for 2PM surgery but the cases before her ended up being more complex than they hoped, so she was pushed back until 5:30PM. That was 18 hours of fasting. No food, no water. She didn’t eat until 9PM. She kept telling herself throughout the day that when it was all over she would get to eat her dinner. Chicken noodle soup. That’s all she wanted.
Yesterday was painful in every way imaginable. Seemingly endless waiting filled with frustration and anxiety. Over and over she would repeat the steps they would take in surgery, to get it straight in her mind and cope with her fears.
“First, they’re going to put the mask on me?”
“Yes,” we would say.
“And then they’re going to do three things? They’re going to cut me, then they’re going to put the tubes in, and then they’re going to put the bandage on?” she’d whimper. “And they’re going to be quick?”
“Yes,” we’d reassure her.
“And I’m not going to feel them cut me because I’m going to be asleep?”
“Yes,” we soothed.
And then she would cry because, above all, she was terrified of the anesthesia mask. Calming her fear while stifling our own anxiety is thoroughly exhausting.
The procedure went well. They did what they needed to do and we don’t doubt the necessity. It is just unbelievably awful to revert back when we seemed to be making such progress.
And it’s in these moments that I feel the sinking weight of bitterness try to consume me. The whys and the “how much more does she have to endure” questions creep in to discourage. Maddie feels it too. She woke up this morning angry. Angry that she is pain, that she has tubes again, and that she doesn’t get to go home yet.
Because, you know what? This sucks. I hate this. I try desperately to remain positive, but today I’m feeling trapped. It’s horrible to watch your child suffer emotionally and physically over and over again for 30 days. The pouring rain outside, in contrast to the past week’s warm sun, reflects my dark mood quite nicely.
And yet, it’s this same little girl who is suffering through these pains who teaches me how to endure. The morning was rough until she said, “Mama, I’m sorry I was mean to you,” and then she moved on. This afternoon she laughs. She finds energy to play with her toys. She continues to wow the nurses with her self-sufficiency. How can I have a bad attitude when she clearly hasn’t given up?
Before the first surgery, Colin gave me a blessing of comfort. The words still echo in my mind. He said that the burden of the emotional pain of this trial would not be removed but that I would be able to endure.
I look at my strong little girl feeding herself, sitting up in the chair, breathing room air all on her own and know those words are true.
We can do this. Just a little longer.