Another fairly quiet day. No Physical, Occupational, or Speech Therapy today, just me and Amber spending the day together. But between meals, G-tube feedings, medications, checking vitals, it’s amazing how quickly the day flies by. We spent some time in the morning coloring together, and watched some Minecraft videos on YouTube together (she still has to explain to me everytime why she wants to watch someone else play, instead of just playing the game herself). And later in the afternoon, we got to take a walk outside, in the sun, with Mem and Pep visiting. A short nap afterwards, then her brother and sisters came to visit.
But during the quieter moments, scattered throughout the day, she would gather up the courage to ask a question or two. Big questions. The Questions. The questions no parent wants to ever have to address. The questions that show just how much your child does understand what’s going on, and how little you can actually shield them from.
What’s going to happen?
When can I go home?
Will this happen to my children?
And bigger questions, that I can’t quite bring myself to write here.
And of course, she wants answers. So I do my best to answer, to be honest, but to do so at a 6 year old level – and learn along the way that I apparently don’t give 6 year olds enough credit.
It’s hard. But it is necessary. She wants to know. She deserves to know. And she is showing the bravery and uncanny maturity of someone who understands there is trouble ahead, and is bracing herself to face it, head on. She is still a 6 year old, and she is scared, but it is clear to me that she knows 100% that Caron and I are with her every step, that she is not alone in this. And so a reasonable level of honest detail from us, and a ton of love and reassurance, helps keep her courage.
And her Faith is strong too – I have been saying the Rosary when I stay overnight with her (alternating with Caron), usually after she falls asleep. Caron, though, has been praying with her before she falls asleep. Earlier this week, Amber asked me if I would “pray the Rosary over her, like Mama does”, because she understands that we are asking for God’s help, through Mary, to help her get healthy. She knows that as long as we ask, God will help us.
Possibly most intriguing to me, though, is seeing her take ownership of the things in her control. Today, lunch was pasta with a side of mushy spinach. Surprisingly, she dove right into the spinach, ate up as much as she could. She never would have touched spinach like this at home, so I asked her why she was eating it instead of the pasta.
“Daddy, spinach makes you strong. And when I get strong, I can go home.”
God, please grant Amber strength for the journey ahead. I can’t wait for Amber to come home …