Seven Months Later...

Believe it or not...Aralyn Faith is 7 months old.
It hasn't been an easy journey but she is still here. Doctors constantly remind me that she is terminal but as each day passes I have a harder time believing them. Friday I found out that she will be getting a PEG Tube to replace her NG Tube. I understand that she is under weight and I realize that this is a common surgery but that doesn't make it any easier. She is only 12 pounds. How do you sedate and operate on a child so small? What if that's when she goes Home? What if this one operation causes her to lose her battle with Trisomy 8? I won't be holding her or even in the same room with her. How do I become OK with this? I sat on the floor holding her the other night and I could not stop crying, begging her not to leave me. After a while I remembered that it wasn't up to her. Sometimes I wish God would just say a date and time. She has a personality, smile, laugh, life. She is a person. I know it would have been hard to lose her like expected but I feel like it's going to be harder now that I have had time with her. She is my baby girl, my miracle.
Rhagan, my 4 year old son, loves his little sister but he too knows that somethings not right. As his mom I felt like the right thing to do was to warn him before hand that Aralyn was very sick and she may go to heaven sooner than later. About once a week he asks, "Is sissy going to go play with Jesus today?". One little sentence shatters my heart into a million little pieces. For seven months I have been able to answer his question with a simple"no" but one day, I know that won't be the case.
I smile, I answer questions, I ignore rude stares, I cry. Is there a proper way to prepare for the unknown? If so, I haven't figured it out yet.