Roller coaster

January 25th 6:30 am

I wait on the phone and tears start falling. Images of my baby having seizures flood my mind and I can't make them stop. My palms start to sweat and my heart is racing as I wait for the Doctor's update.

He finally picks up and tells me it's not good. My heart can't quite understand what my ears are hearing. He continues and tells me that we have the option to discontinue support if we wish. What?? I'm sure I didn't hear him right. My voice catches as I stutter a goodbye and hang up the phone. As I walk numbly to my room and fall into bed, his words tumble in my mind and I try to make sense of them. I start sobbing as I relay the conversation to my husband. We hold hands and pray like we've never done before. 

9:30 am

We drive in silence. There is a horrible desperation hanging in the air as we make our way to the hospital. I hold Tyler's hand like a lifeline. I don't know if I can face what the day might bring. 

We arrive at the NICU and I see my baby lying there in all his tiny cuteness. 

And I feel my heart break.

The nurses bustle around us and we reach our hands through the openings of Will's incubator. The feeling of helplessness almost overwhelms me.

We talk to the Doctor and he explains that our baby will continue the anti-seizure medication for the time being. He can't get an MRI done until he's completely off ventilation, which won't be for another few months. So... we wait. No answers. No reassurances. 

The tears don't stop. I didn't know I had so many. 

We drive home and go through the routine of brushing our teeth and getting ready for bed. It's such a normal thing to do.. it feels weird. 

January 26th

I slowly wake and for a brief second, the horror of the day before is not in my thoughts. But then it all comes crashing back and I desperately want to go back to sleep. 

Today is Sunday. Time for church. 

I shower and get the kids ready and we miraculously make it on time. I go through the motions of smiling at people, chatting, telling everyone "things are Ok" when they ask. But things are not OK. I attend the last hour and feel a glimmer of peace. I can't even remember what the lesson was about.

After church, the kids and I make cupcakes. It feels sooo good to be in the kitchen with my two sweet ones, baking together. 

As Tyler and I enter the NICU in the evening, there is a different Doctor working. I suddenly feel anxious to get his perspective on Will's outlook. We talk with him and he gives us a lot of hope. He admits that Will very well could have significant mental problems. But he may not. Time will tell. 

After our talk, the nurse takes the top off of Will's incubator. Oh my sweet baby! I put my face down next to him and nuzzle his soft belly, breathing in his scent. I am in heaven. I wash his hair and change his diaper and I can't think of one thing I'd rather be doing. I lay my head next to him again and sing him quiet songs. This is how it should be. Always. 

We leave the NICU and I am floating. 

We pray before bed and thank Heavenly Father for such a miraculous little boy. No matter what happens, he is ours forever. I will always be his mama.