One Year


"You should wake up," my mother informed me.  I don't know how deeply I had been asleep as I hadn't had a decent sleep in over a week.  Every night our sleep was repeatedly interrupted as nurses checked numbers and therapists suctioned Clara's nasal passages and throat every two to three hours.  Most nights Clara lived in fear of the next person who would enter our room to declare war on her nose.  I remember wishing desperately that I could help her understand they were trying to help her as she cried and fought with her entire body.  Sometimes I had to be the person to hold her down.  I wanted to scream at them to stop, but logic told me to allow them get her better.

That evening Mom had offered to sleep in the chair next to Clara's bed so I could get a more peaceful sleep.  That was the idea, but it didn't pan out so well. I sluggishly lifted myself from the comfort of the couch on the other side of the room as my eyes adjusted to the low light and blurry figures. I wasn't wearing my contacts.

It was 4 am and the room was filled with medical staff: doctors, resident doctors, nurses, respiratory therapists.  I remained calm as they worked and watched over Clara, discussing options and ideas.  I knew she was struggling with her oxygen levels.

The room was mostly silent as everyone watched the oxygen monitor.  The number dropped dramatically each time she fell into a deep slumber.  The main doctor, who had settled into one of our chairs as he studied the situation, asked me if I was seeing something maybe they had overlooked.  He was desperate for clues that would lead to an answer.  Why was she getting worse?  I was overcome with a feeling of dread.
A panic was building up inside of me.  Was I going to lose my baby?  Were these doctors giving up?

It was about two hours later, after Clara had been transferred to the PICU that I finally let it out as I looked at my surroundings and realized my family was being torn apart.  Lxkas couldn't stay with us in PICU.  I had to stay with Clara and I was afraid I was losing her.  After a short but needed cry I got a hold of myself and we trudged on--for two more weeks.

We had only been a little over a week in to what would become a three and a half week stay.   I was afraid we were going to celebrate her first birthday there, but 5 days prior she had finally been off oxygen for over 24 hours and she got to come home.  Never have I felt a greater relief than the day we walked out the front doors of that hospital with Clara in my arms.

This journey with her lungs isn't over.  We have follow up tests with the pulmonary specialist.  Unanswered questions linger.

I find myself wondering about her oxygen levels when she breaths loud.  I find myself living in fear that she may go back.  These days we live with a lot of demons, but we also live with gratitude because everyone is back home.  We are together.

I knew before she was born she would keep me on my toes.  I even wrote it here.
Happy 1st birthday, Clara.  We'll keep fighting and we'll keep winning.



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