Gray. It’s my favorite color, but not when it comes to knowing. When it comes to knowing, I want answers. I want to know when. I want black or white.
But dying, like living, is full of gray.
As I type, just got an email notification from the middle school Jayden would have been attending if he didn’t have Sanfilippo. It was a reminder about the school dance tonight.
As I type, I listen to the rhythm of his breath. In the background, Mickey Mouse Clubhouse plays.
I can’t believe it’s snowing.
I can’t believe it’s November.
I can’t believe my son is dying.
What we have anticipated since 2009 is here.
The hospice nurse stopped by to check Jayden and told us because it’s his brain that is failing, no one knows how much time he has left. Lungs are clear. Heart is strong. Still tolerating his feeds. Only Jesus and Jayden know and it is our job to listen.
He is sleeping a lot today because we started meds for pain. I miss the laughter and smiles this morning, but I love the peace it brings to his restless body. He is calm.
Last night, Justin had him cradled in his legs sitting in the trampoline. Jayden smiled.
Earlier, he was tickling Jayden on his face with his beard. Jayden smiled.
Justin is such a great dad. Serious comes easy for me, I have to work harder at having fun. Justin is fun. I love that we balance one another out. In fact, we are stronger than ever. And today, like many of our days lately, we are on the same page. We feel honored to be Jayden’s parents. It’s easy loving him, what’s hard is letting him go.
The end of life process is equally difficult as beautiful, I am finding out. God is being patient and gentle with our hearts. He is answering every prayer we have prayed for this time. He is meeting us in every decision, every moment.
The peace in the home is sustaining me. I have candles burning, soft music playing, and chocolate donuts staring at me. The lights are off, the sun giving us most of our light. My countertops are clean. The laundry machine is going. It is calm. I can focus. My mind is clear. I still have an anxious heart, to be expected, but God’s peace is greater.
We are ready for casseroles, but not quite ready for visitors. We feel bad for keeping many of you in the wings, but we have to do what feels right, and creating a sacred space in our home right now feels right. Please know we feel and need your love very much. Your prayers and texts are sustaining us as well as the meals that are being dropped off. Kate and Kat set up a link to sign up if you would like to bless our family in this very special way.
I am glad my favorite color is gray, because you know what it means?
More. More unknown. More trust. More love. More time.
And I will take all the time I can get.