As Norah grows up at the hospital, our situation becomes increasingly difficult. The truth is that I'm tired of being strong. Though the quality of care at PCMC is unparalleled, I hate leaving her there. I just want to take my sweet girl home. I want to be able to laugh and smile all day with her. I want to tickle her toes and play "Itsy Bitsy Spider". I want to paint her tiny toenails with private giggles and cuddles just for us to share. I want Harper to be able to give her smooches and read books to her. I want family nap time on the weekend. I want to watch Jeff fall asleep while holding her late at night. I don't want to have to worry about test results, treatment plans, x-rays, ventilator settings, hearing aids, and specialty doctors. I don't want Norah feel the pain of blood draws, culture swabs, the tug of the vent on her trachea or her g-tube on her belly, or all of the constant invasive poking and prodding. I want normalcy. I guess our current way of things is "our normal".
I try not to feel sorry for myself too often. After all, I know things could be much more difficult. We are fortunate to have as much as we do. Most of all, we are fortunate that someday, we will be able to take Norah home. She has a challenging but bright future so long as we all be patient and hang in there. Deep breaths aren't easy for our family (especially Norah), but we sure are trying.