It is the 24th of July. It is supposed to be a celebration. When we come to Utah at this time of the year we have picnics, bar-b-ques, hiking, water skiing, and of course watch the fireworks. None of which happened today.
As we are spending time with Nicole today we can tell that more than anything she wishes she could talk. She tries so hard to mouth words that we don't understand. She tries to be patients with those around who are guessing at what she is saying. Her ears are very sensitive to sound at this time so any extra noise really bothers her. She doesn't want me in the room right now. Apparently when I talk to try to guess what she is saying it hurts her ears. I am heart broken. All she wants is her dad.
Nicole is in a cardiac chair again today. We are so proud of her. She just sleeps but it is an ordeal to get her in the chair. The pain of moving her is practically unbearable. When she gets to the chair she can be left alone to slumber.
Our sweet girls two favorite holidays, July 4th and July 24th ( because of the fireworks) are both forever changed. John and I thought we would be able to see the fireworks tonight. We wanted to watch them for Nicole so we could tell her about them. That didn't happen. So much going on at that time of the evening that we didn't want to leave her.
When I come back into the room from being booted out earlier, Nicole smiles at me and mouths, "I love you". She squeezes her eyes together in a tight "hug". That is how we hug from across the room. Totally made my night.
John gave her a fathers blessing tonight. It was very comforting to me. I hope it was to her also. During the blessing her eyes were open. not only were they open but they were very wide. Like she was trying really hard to listen to all that was being said. She was blessed with comfort and should she choose to stay in this life that her cells would be healed and she would have the strength to carry on. She was also blessed that she would be able to tell her story to others and it would be a source of strength to them.
When John is finished Nicole is crying. She mouths that she wants to go home. When I ask her which home she mouths, "to live with Heavenly Father". I am beyond words. I know this is a distinct possibility yet I am so full of emotion I have to leave the room. I am so glad John is here to ease my burden. I hope I am easing his as well.
I can't come back into the room for 30 minutes. I need that time to recover. Maybe it was just my time to break down. I just don't know what will happen. I wish I did. The journey would be much simpler. I just want simple for once. As we get ready to leave I ask the nurse, "What if something happens and I am not here?" Her reply: "We will call you right away and do what we can for her." I am comforted that I will be called right away.