Last year at this time….

 

As I have mentioned in previous blogs, I don’t usually dwell on the past.  But because I have been trying to raise awareness for Tuberous Sclerosis this month, I keep thinking about this same time last year.  It was during this same week after Mother’s Day that Tiara was supposed to be recovering from her second brain surgeon on April 30.  She wouldn’t stop seizing even though she was in a medically induced coma.  She lay motionless in the ICU, while the EEG monitor showed she was having tons of seizures.  The seizures, the swelling from the surgery and extra fluid in the brain all contributed to increased pressure in her brain.  The doctors were trying everything to reduce the pressure but nothing was working.  As a result she suffered 2 strokes.

I will never forget the moment her neurosurgeon sat me down on a chair at the nurse’s station outside of Tiara’s ICU room.  We had just returned from an MRI and he pulled up a picture of her brain from the scan.  He pointed to an area at the base of the skull and explained that is where the damage had occurred from the strokes.  He then looked me directly in the eyes and said “Based on this MRI scan, we believe she is most likely blind.  If she recovers, she will be in this hospital for a very long time and it will be a very hard recovery”.  I processed what he was saying to me, but it wasn’t totally sinking in.  All I could hear was “IF and BLIND”.  What did he mean by “if” she recovered?  What was he trying to tell me?  Did I have the strength and the courage to ask him, or should I just keep listening?  I knew what he was saying, but he wasn’t really coming out and saying it.  I had to know even though I was terrified to ask. And so, I looked up at him since I was in the chair and he was standing over me and asked, “Is she going to live?”  “I don’t know,” he said with tears in his eyes.  He grabbed both my hands, and said “I’m sorry.”

I put my head down and sobbed as every doctor and nurse in the ICU watched.  I then looked up and saw several nurses crying, just like me.  What am I supposed to do. now?  I felt so awkward sitting there crying while everyone watched.  I didn’t want to look at anyone or talk to anyone but  every wall was glass in the ICU except the exterior wall so I could see the looks of anguish on their faces.  It was like her room was a beehive and everyone was buzzing around it focused on us, except there was no buzzing sound, it was silent, except for the sound of the machines keeping her alive.  I got up and hugged my poor friend Carol who had come to visit and was now stuck in the middle of this horrible situation and walked into Tiara’s room.

I sat staring at Tiara lying in the bed and then realized I had to call Lou.  He had gone back to work, since sadly, someone still has to work even when tragedy occurs.  I picked up my cell phone and dialed his number.  He answered right away and said “What’s wrong?”  “Tiara had 2 strokes, she is blind and they don’t know if she will live,” I sobbed.  “I’ll be right there, I am leaving work right now,” he said.  “Please drive carefully Louie, I can’t have you hurt.”  I then proceeded to call everyone in my family and tell them the exact same thing.  

And that was the worst day of my life .

As I wrote this today I cried and cried.  I can’t believe that really happened and yet my baby is alive and isn’t blind.  She lost partial vision but it doesn’t seem to bother her too much.  

Thank you God for performing a miracle…