I promised God that I’d do better when I left that tiny hospital chapel. Guilt had me convinced that somehow it was all up to me to “fix” her. I just remember thinking that I had to make things right with my baby girl. I had to make it up to her. I took one solid deep breath and headed back to that dreadful hospital room and watched her sit, wring her hands, rock and moan. The whole time whispering, “please God, make her better, I’m sorry.” Those days taught me how precious life is and how it can change in an instant and I’ll never, ever forget that lesson.

When she was stable enough to transfer, we had to leave Mother Francis Hospital for our hospital and doctors in central Texas.  It was hard saying goodbye to that group of physicians and nurses who had been so amazing.  The night our baby arrived on the helicopter, the ER doctor had been on his way to his annual Thanksgiving hunting trip and had to turn around to meet this sick little girl. Everyone from the helicopter pilots to the floor nurses fell in love with her and wanted to take care of us.  They found hospital beds for us to sleep in and provided us with many things from their own homes; such as clothes, soap, shampoo and even food for the both of us while we sat in ICU with her.  But, they had done all they could do there and we had to get her back to her primary care doctors so they could monitor her and decide on her course of treatment. The worried looks in their faces as we left told me everything; they were concerned for our little girl and the ‘hit’ she had taken, and I was scared.

I rode with her in the back of the ambulance for the three hour ride, laying on the gurney with her in my arms.  Keeping her calm and quiet was a challenge; she was a bundle of nerves fighting sleep with every ounce. The only thing I could do was sing to her and rock her. Every time the ambulance hit a bump, turned or stopped, she would wake up and scream; taking me another five to ten minutes of singing to get her to calm down. It was the longest three hours of my life and I’m sure of the ambulance drivers’ lives too.  What had done this to my little girl?  It was like she was schizophrenic, like there was a mentally ill person screaming to get out of this toddler’s body. I was quickly losing faith once more in the very things that had been temporarily holding me together.

When we were able to go home three weeks later with our little girl, we were armed with resources and were finally going to get some professional help.  There was now a definitive problem witnessed by many and we were referred to the state’s early childhood program after meeting with the hospital social worker.  I was looking forward to the help, but afraid to face this new challenge after that awful Thanksgiving night, which is now one of my least favorite holidays. A case manager came to our house to provide therapy and support and we began working with a speech therapist as well. Would I finally be getting an answer as to why this was all happening? Were they finally going to tell me what was wrong with my baby girl?

Of course, no answers came. None of the professionals were telling us anything, including the doctors that cared for her. Nobody was giving me reasons as to what caused her seizures and why she was so different from other two-year olds. The only word we ever heard out of their mouths was, “developmental delay.”  Hmmm, delay basically means not on time-right?  If a bus is ‘delayed’ it will arrive at the stop eventually.  So, eventually she’ll be like all the other kids her age? Wait a minute, was I in denial?  This sounds like denial; but, I wasn’t the professional. I was simply clinging to what they were saying; she was simply delayed, just ‘running behind’. They were the ones using those words, not me. But, whatever they called it, I still felt it was MY fault. I was the one that didn’t want her. I was the one asking for her to be taken away. I was the one apologizing from the very first minute I found out she was coming.  GUILT was still heavily parked on my chest with no signs of backing up any time soon.

There are times I sit quietly and wonder the reasons; there are times I cry out and question believing.

This child of mine I can’t comprehend; her mind so fragile there’s so much to mend.

There’s no one to answer the questions I cast; and nothing to stop me from blaming my past.

I’m caught up in feelings I never imagined;  this guilt that I’m carrying is quite heavy baggage.

If only the rest of the world could just see; I’m doing the best with what’s inside me.