Recuperating
It’s been about a week and a half since our discharge from CHLA. Seems like forever…
Getting back to the “normal” life, outside of the hospital and the beeping monitors and the frequent visits from nurses and doctors, has been relatively smooth. Aside from Nathan’s crying fest the first two nights we were all home together, he’s been adjusting well. When he hears Justin crying, he runs to Justin saying, “I here, Pee Wee. I, here. It’s OK.” Loi’s back at work. I’m back at home–cleaning bottles, pumping, cleaning, sorting through the stack of (medical) bills.
We’re back in our familiar settings, doing our familiar things. Yet, nothing seems to be the same.
In the past month, my child’s life had ended twice. He got a pacemaker put in. He went through another open heart surgery. He bled a “generous” amount of blood after surgery. He had a stroke. No matter how much I want things to be the way they were, it will not be. Things have changed, perspectives have changed.
We had a meeting with Justin’s cardiologist on Tuesday. I found myself having to relive the entire nightmare with having to recap all the major episodes Justin had gone through. Then, there were plans to meet with more specialists, a neurologist and hematologist. The cardiologist wants to clear the way of any potential blood clotting issues that Justin may inherently have which may have caused the stroke, hence the meeting with the hematologist.
Worst of all, I think, was how we had to discuss about Justin’s leaky valve. From the last echocardiogram done at the hospital prior to discharge, it didn’t seem to get better. My hope is that it will improve as his body adjusts to the new physiology of his heart. For now, his lips are little bit bluer and his color is not as rosy as it had been after the BT shunt had been put in (I looked at pictures to compare).
I dreaded this discussion because it only made the fragility of Justin’s life more real to me. His entire existence depends on this crucial organ, the heart–if it fails, all else will, too. With the valve being as leaky as it is, with no hope of repair, with only medication to help alleviate the stress on that valve, I worry.
I worry: How long will his heart last? Will he make it to the Fontan? Will he qualify for a heart transplant? Can I handle what is ahead?
This morning, I had left the room for a moment and returned to a screaming Justin. I quickly scooped him up and in a sing-song voice said, “I’m sorry, baby. I’m sorry. Mommy’s here, now. Mommy’s here. I love you.” I hugged him tight, rocked him back and forth, as I smacked my lips against his forehead until his wide mouthed, squinty eyed scream turned into a smile.
I looked at him, serene and content that Mommy had rescued him from his loneliness and thought, “If only easing all your pain could be this easy…if only my kisses and hugs were all it took to heal you…”
But, who’s going to heal my pain if anything were to happen to him?
This battle, of living life each day for that day, appreciating all that life has to give is ongoing. I realize, now, that everyday for the rest of our lives are days of healing, of accepting what is, and letting go of what could have been.
I asked Loi this morning, “Do you think we made the right choices for him?,” referring to the events leading up to Justin getting the pacemaker put in. I wondered what we could have done differently.
“There’s no point in thinking about that, now,” Loi told me. “Don’t waste your energy.”
He’s right. What’s done is done. It is time to move forward and live with the time that we have left. No point in thinking of things that we cannot change.
Trust in the Lord with all your heart
and lean not on your own understanding.
In all your ways acknowledge him
and he shall direct your path.
Proverbs 3:5