I know if I were you, I'd be wondering what was going on in my head right now. While I won't share it all (you might call the looney bin on me), I can tell you some of my thoughts and feelings.
I feel like I'm walking a tight rope and if I tip to one side or the other, tragedy will happen. I know it's not true. I know that I, Manny and my family are safe in the palm of God's capable, loving hands. But it FEELS like it. I don't feel like I have to be perfect or "get it right" but I do feel like there are some choices that have worse outcomes than others, some that leave bigger scars.
During the day, I try my best to keep it together. I go about my daily life like all is fine. And then I run into these IDIOTS (I don't use that term lightly) who have no clue and say hurtful things. I Know they don't mean to hurt but they do. Like yesterday, I was in the doctor's office with Manny. He was asleep so he was on oxygen. I sat quietly minding my own business as to not have questions. When she asked how old, I simply said 11 months and went back to thumbing through magazine. I knew it would not end there. I knew she would push the conversation until SHE felt uncomfortable and I was trying desperately to avoid HER feeling stupid.
One question led to another and each time, I answered matter of factly. She even felt the need to tell me we had the wrong type of oxygen tank. That a baby this small should have the small type. I told her it was about how much oxygen was needed and he needed the full size tank. I'm feeling judged by this stranger on what type of oxygen we use! Ugh
All the while, I knew what she really wanted to ask was why he was on oxygen. I could feel my patience for her waining. I even got up to walk away so she would get the hint that the conversation was OVER ... but she pushed it. "He have asthma?" no. "He have cystic fibrosis?" no. "Why DOES he need oxygen?" And as I said it, I knew she would feel like a complete a$$ but she wouldn't let it drop so I told her. "He was just diagnosed with a terminal brain disease. Kids with this die of respiratory failure. So he needs oxygen."
I could hear the breath leave her body. She sat rigid in her seat and barely took another breath. We sat in silence for another 5 minutes or so until her child was called to be seen. I'm sure she was relieved by that.
And of course I felt bad for her. (I know most of you will say I shouldn't have ... but the truth is ... I did.) I don't know how to stop the conversation yet. But I'll learn. "It's none of your business" doesn't seem quite right but it's actually the truth. See? I fell off the tight rope yesterday.
But as I dusted myself off and got back on the tight rope I learned something. It's going to happen. I AM going to fall off. I WILL get some of this journey "wrong" or wish I had a "redo". But I also know I'll get a lot right. And I don't want to miss one step of this journey.
Yesterday he had a very, very bad day. He was having a lot of symptoms and it was very scary. But today, he is a little more back to himself. He was laughing and smiling at me. And it makes every part of this journey on my tight rope worth it.