Four years 

It’s been four years. Just typing that sentence takes me back to that space, that moment. 
The moment they told me you had two holes in your beautiful heart, it was only January of 2013.  The moment I collapsed into the chair and the nurse just hugged me. We had already been there for over a month. And now we knew. But you were too little, and too sick from other complications, to operate. We had to wait. 

Fast forward to April 28th. The day before surgery your family came to meet me in Tallahassee for lunch at Cracker Barrel. Then I cried saying goodbye, because I was terrified of what the next day held. Nana and Aunt Kit Kat came back to Gainesville with me. I decided to take a nap that afternoon. I knew exactly what I wanted to do. 

You were almost five months old. You were still so little. I had heard the surgeons name several times during our stay in the NICU. I heard so many great things about him. You were first case April 29th. 7am. I knew that meant I had to hold you all night until they came for you. I thought the nurses were so annoyed with me. You were intubated and had so many chords, but once we got you settled in my arms, we didn’t move. I knew surgery would be 8 hours long. I knew I would be sick waiting. I knew I would be exhausted. I knew I would terrified. I was so worried you weren’t strong enough yet. I could barely let you go when they came. 

My one rule that morning for myself, nana, and kit kat: Do not let her see you crying when they take her back. I didn’t want that to be your last image. Then the doors shut to the OR. I missed you. 

And you proved me wrong. You were strong enough for this since you were in my tummy.  

You gave us scares. You gave us hope. And the surgeon gave you a better working heart with two little beautiful patches in it. How do you thank someone for that? For saving your life? 

Thank you Dr. Bleiweis. Thank you Shands. Thank you for the heart team. The nurses. Everyone. Anyone. 

Happy heariversary Cupcake. We love you so much. 


Thy Will Be Done 

This song. 

This song is everything.

I can’t find a way to forgive myself. I don’t think I ever will. And because I carry that guilt it can run over into my overall outlook on life.  

In general, I’m happy. I’m happy with Alyssa’s progress. Her routine. Her schedule. Her life. I never wanted children. But then she was here. And I’ve never loved someone so much. I still don’t know how it’s possible. And I get to love her. She loves me. And God thought I deserved that. And I’m eternally grateful. 

Do I know it could be worse? Yes. But does that mean I wake up and say “Thank you God for just making Alyssa paralyzed and dependent on medical miracles for a chance at normal life!” No. But with time will come understanding. 

And this song is always a step in the right direction. It’s great meditation. Sitting. Listening. Talking things out in my heart. This is His will. This is out of my control. Instead of focusing on the negatives, the mourning, and the guilt, I can focus on all the positives. And trust me, the positives outweigh the negatives. It’s just learning that separation. 

Alyssa is everything pure. Everything beautiful. And everything right in my world. I don’t remember life without her now. I don’t want to know a life without her. I have my purpose. I have my Cupcake.