We all knew Vivi was a special baby. I was thinking all along it was going to be because of all the prayers she received, or beating the odds that she already has. But today, I found out, it is in fact that she is going to be a medical celebrity. At our meeting with the doctors today, we found out Vivian not only is diagnosed with HLHS, but also Abernathy Syndrome. Why is this an intense find? Because she is the first baby (person) ever to be diagnosed with both. This explains why this process has been taking so long to get a move on. The doctors have never seen this, there are no journals, no research--nothing that helps them know what to do or what will happen in the future. We of course have decided to continue on with surgery, which will be either be Wednesday or Thursday of this week.
Today has been an interesting day. I have learned a lot, felt a lot and am exhausted through it all. I have learned that marriage is really a sacrament. Throughout our whole pregnancy, I had on a happy face and felt great strength and hope in regards to Viv's diagnosis of HLHS. This week, I have not been so peppy. I have lived in a paralyzing fear that all I could do was cry about what we were hearing and going to face with Vivian. A line from Matt Hammitt's song, "All of Me" which is written about his son, Bowen, who has HLHS goes, "Afraid to love something that could break, could I move on if you were torn away". That has been all I have felt and heard. I have been walking around with an overlying feeling of Doomsday that I couldn't shake. Rod, on the other hand, has been unbelieveable. I am so proud of how he has handled himself with incredible hope and immense love for Viv and for me as we face this reality. His strength has been lifting me up in this weakness this week.
I am learning that I have to let go and live for this day. None of us are promised tomorrow, we are now just more sensitive to that fact. My struggle has been realizing this, and wondering why I am learning this because of my baby. God's Will is perfect, and I have to keep committing myself to that truth. Today has been a beautiful day. I have been able to nurse, to bathe my girl and snuggle with her. These are the moments that matter because they were here and were ours to spend together. I don't want to take these moments for granted.
I realized I can't depend on myself to make it through this. I must surrender not just Viv, but myself to Christ. I thank all of you so much for the extra prayers you have offered for me today. They have warmed my heart and allowed me to feel more like my cheerful, optimistic self. I believe in a full recovery, I do believe Vivi is fearfully and wonderfully made in God's image and I am so blessed because she is mine :)
I was in the bathroom today and for a minute I thought about our first visit to Children's. That day, I felt Christ tell me, "Honey, I am so sorry you have to go through this, but it is for my Greater Glory". My mom spoke with two people today and both said the same thing to her without knowing this is how I was feeling. What a confirmation to console my soul. I know this is going to be another great Tapestry of God's. And I promise Michelle, all Vivi's socks and headbands will match for the medical journal pictures. :)