I was discouraged this morning as I drove through the rain to get to the hospital. It was gray and gloomy and that’s how I felt. This is overwhelming. I asked myself how we are really supposed to do all of this – work , be with Grace, represent Grace, be with Graham, help each other with all the emotions that come with what we are going through, and do it all on little sleep.
Last night I was home with Graham. We drove through a rainstorm on the way home. We saw a beautiful rainbow as we approached home. “Mom, it’s my first rainbow,” he told me. I replied “yay” . He said, “tell me congratulations.” I did.
I loved that moment. Kevin and I laughed about it later. It was somehow just what I needed.
This morning there was no rainbow for me to see before I got to the hospital.
Today we got to give her a bed bath. You can see her ribs. Everyone is excited about this. Her tummy is normal – no sign of the roundedness that brought us in here.
Tomorrow we will stop the tube that’s pulling food out of her stomach and if she does ok without it for 8 hours it will come out.
On Saturday we will give her Pedialyte. While she hasn’t met the measure for any of this to happen (that they’ve been telling us she needs to meet) the surgeon reminded me of the art and science of medicine. With Grace, she needs to use a little art. Again what can’t be explained by science is Grace and that makes me feel a little better.
It’s also just been good to be with Grace today. To see her furrow her eyebrows at people. I saw her grab a toothbrush from a nurse so fast that the nurse was surprised by her strength. A stuffed horse arrived today from a family – that horse has been drooled on, petted, and flung around a few times. It’s tucked in next to her now.
It’s raining again outside. She’s snuggled all on her side, even though I tried to position her differently – and for right now that’s enough.