This day, one year ago

On this very same day, just one year ago, Theodore was 6 days old. He was full of baby fat and smiles and yawns and soft cries. He brought light and love to my every breath, I was thrilled to be his momma.

But on this day, the neonatologist came in and gave us the results that changed everything. A few days back the MRI brain scan had been done and we were all waiting for a result that would promise a future. I was so expecting to take my boy home and tirelessly work with the needs he had. But God had a different plan, that had been hidden until now. The doctor asked if I wanted to look at the scans of Theo’s brain but I could not. I saw everything I needed to see, in the crook of my arm. He was beautiful, my son.

Sean came back from the room, the doctor shadowing behind him. I knew from his wet face that it was not the plan that we had prayed for. He put his arms around Theo and I and whispered, “i’m sorry.” The doctor sat heavily, showing her years of grief for all the babies she could not save. “Emily, the MRI showed that Theodore has only 10% of a brain, and of that 10%, its very….scattered….disorganized.”

I don’t get it, what does that mean? Can we fix it? Look, he’s doing so well!

Emily, the brain does not repair itself. There is no growth from something that is not there. Emily, Theodore will be brain dead, he will be in a vegetative state his whole life. Without his brain, there is nothing telling his body what to do. Slowly the rest of his body will shut down. We can do surgery to make those things better, but they will get worse again. Its your choice, we will do whatever you tell us to do. We can let him go or we can prolong death with surgeries for the bowel.”

It was as if she was talking about someone else. Who was this boy she was speaking of?

She left the room for Sean and I to ruminate. But all we could do was cry. Theo was alive and happy, held in my arms, and death was looming at my door.

The decision was made for us, God had made sweet Theo to live for just 24 days. I was angry, confused. I’m still angry, asking WHY?!? But on that day our hearts took over and held our son. I wanted the decision in my hands, but instead Theo was in my hands. So we held him and he held us, for 18 more days.

Psalm 127

“Children are a gift from the Lord; they are a reward from him. Children born to a young man are like arrows in a warrior’s hands. How joyful is the man whose quiver is full of them! He will not be put to shame when he confronts his accusers at the city gates.”

On Theo’s birthday morn I was searching for something of comfort and came across this verse from the book of Psalms. Speaking to my aching heart and wet eyes, it gave me the gift of gratitude.

Happy Birthday Theo

Today, March 17, is my little man’s birthday. I promised to write Theodore a birthday letter every year on this day. Today I will share his very first one.

Dear Theodore,

Happy Birthday my sweet baby Theo! Just one year ago your daddy and I welcomed you into the world at 9:22am. I remember how peacefully you arrived, with very soft cries. Dr. Kiley carried you over to me and I kissed your sweet face. Daddy was crying with joy, we could both see how beautiful you were. Your hair and features, even the green eyes, were just like mama. But your hands and heart were replicas of daddy, pure love.

I remember being so proud that you were a big boy, weighing 7lb. 2oz. On your birthday you met g&g Tanke, Uncle Matt who baptized you, and godparents Dan and Abby. We poured out all of our love to you but in return you gave us so much more. Your love has filled my life, even through all the sadness I feel for missing you. Every moment of every day I have carried your lesson of gratitude with me. I am so thankful to God for making you my son. You are beautiful and strong, selfless and open to loving all God’s people. Thank you for choosing me to be your mom, I promise to love you and honor you through the rest of my days.

Please shine through my heart Theo, hold me in your love because I miss you so much. I love you sweet boy. Enjoy your special birthday.

Mama

Walk

Blessed walks. The morning and Madeline and me.

Theo would not have been able to walk most likely. At least thats what I understand from the mysterious wasteland of neuroscience. With only 10% of a brain and that 10% being “highly disorganized,” all things I know, do and understand instinctually would be impossible for my little man.

But every morning his tiny, precious soul is with me.

No need to understand mom. God lets me walk, right here with you. Deep in your heart. 

Thank you Theodore. I am so happy to be your momma.