July 18th

Last night was hard.  So hard.

I will happily admit that I have a wall up right now.  I am sad.  Terribly sad, BUT Rowan is still here.  I refuse to weep all the time when he is still here.  I can still hold him. Talk to him. Sing to him. Play with him. See him smile. Put socks on his feet when they are cold. I can still do those things.  Mentally and emotionally I feel very well balanced.  I am accepting of what is happening and embracing my role as his loving mother.  I want to ease his passing, this giant transition from our world to whatever is afterward.  How can I love and comfort him if I’m sobbing all the time?

So I refuse to sit and think about how hard this will all be afterwards..because we aren’t there yet. And I can do that…most of the time.

Last night, it was bed time and Evelyn started SOBBING.  She was super upset, and couldn’t calm down.  She kept saying “Mom, I’m not okay” and then would say something like “Can I have a drink of water? That would make me better.” So we went and got a drink of water from the kitchen and she started kept crying.  She was so upset and seemed so confused that she didn’t feel better. It was like she couldn’t understand why nothing made her okay.  Why couldn’t she calm down?  Finally she sat down in her bed and said “Mom, I don’t want baby Rowan to die. We need to go to the hospital.  They’ll make him better.” So I of course started sobbing.

“Evelyn, I want Rowan to get better too. I don’t want him to die. But his heart is broken and we can’t fix it.  The doctors tried.  That’s why he went to the hospital so much. But he is home so we can love him and spend time with him. It’s okay for you to be sad Evelyn. It’s okay to cry. It’s okay to want him to get better.”

She cried for a long time and then slowly settled down. I sang to her for a while, sounding choked and letting little whimpers escape periodically.

Once she finally went to sleep, safe in her bed, I went to mine and starting sobbing. I don’t want my son to die. Every fiber in my being wanted to go hook a feeding pump up and tell Rowan that he had to get better because I couldn’t do this. I can’t say goodbye. I’m not ready.  How will I go the rest of my life knowing there is this giant hole next to Evelyn that is unfilled? How will I ever look at family pictures, or stockings hung on our fireplace, or at a table setting and not think “there should be 4”? How?

So I cried. A lot.

And then I put myself together, went into Rowan’s room, sat down in our rocking chair – just the two of us (until our dog laid next to him on my lap) and we rocked. I sang him his lullaby I made up a while ago and he smiled and then fell asleep.  Every time I would start singing, he’d smile in his sleep.  We just cuddled for a few hours, with me crying periodically and my tears landing warmly on the soft blankets we wrap him in. I kissed him and just spent time truly enjoying him.

I talked to him about how I felt. I told him that we were listening to him. That I wanted him, and no one else. How proud I am…how whatever is after, there will be peace. No pain. And friends. Oakes. Grandma. Grandpa. And one day I will come find him.

And then I went to bed.  I woke up this morning to Evelyn going

“Hi Rowan! You are awake!”

Rowan, “AHHHH”.

Evelyn: What?

Rowan: Ahba

Evelyn: Rowan, I don’t understand you.

Rowan: Ahba

Evelyn: WHAT? Do you want to play with your toys? Here you go!

Rowan: AHHHH

Evelyn: There you go! You like your toys?

New day. New battle. Rowan has been awake and playful for a few hours.  Sleeping more. Still here. Still loving us. Still beautiful.