I will be grieving pretty openly the next few days. If you need to keep scrolling that’s ok, I’m not offended. But a lot of the followers are here because they or someone they love care for a medically fragile kid like Nolan. Many of you care for a kid with Lissencephaly. So I want to be transparent and honest. I want you to know how hard this is. But I want you to see that despite how hard this is, I am ok. And when the time comes you can be ok too.
Reflecting on yesterday, these are some of the defining moments outside of Nolan’s passing.When we had to call it in, we were able to get a familiar face and friend in our old home health nurse. Rather than a stranger, we had a friend, a former caretaker, and she prayed and grieved with us.
There will be lots of hard moments, but carrying Nolan out of his room to the gurney was one of the hardest moments I’ll ever have in my life. But I wanted to carry him myself, and I did. I can do hard things.
As the hearse was ready to pull away the school bus pulled up to get the boys for preschool. Rather than making me sad, this reminded me that the world is still turning, and when we are ready to be normal again, our world can start turning again too. I told the bus driver of Nolan’s passing, and we made plans to get Landon back on track Monday. We can do hard things.
I was so dreading telling Karson. Dad picked him up from school a little early and Justin and I told him in the twins’ room. He was so big. He cried hard, and said this was the worst day of his life. I agreed it was the worst day of mine too. We cried together. We said it’s ok to cry whenever you feel like it. But it’s ok to laugh and play whenever you feel like it too. He wanted some quiet time with us, then he and I snuggled some more. He asked a lot of good questions. A few tears and questions have followed, but he has played hard in between. Marshall did his job, and proved his purpose as Karson’s first giggle was the result of sloppy puppy kisses. There have been many more giggles since. Karson is glad “so many people care”, and has repeated that to us multiple times. He is 6, and he can do hard things.
After making arrangements, Justin and I came home to a porch glowing with candles. This is not a tradition I had heard of, and its sweetness brought me to me my knees. I was on the porch looking at cards as another family pulled up. They continued all night. Some of the gestures are from women who have lost loved ones. One who lost a husband years ago. One who lost a sweet little boy. Even our nurse, whose love for Nolan equals mine lost a daughter years ago. So being kind to us undoubtedly brings back hard memories, but here they are. They can do hard things.
It’s been 24 hours now. One day is behind us. Soon it will be 24 more. I can do hard things.