August 2, 2013. One year ago today, life changed. My two-year-old little girl went in for eye surgery and an MRI. Her brain was the last part of her body that had not been checked in our year long, diagnostic journey. Would it give us answers as to why she was so delayed? Would my worst fear come to fruition? Would they find something? I went back and forth with myself as we waited for results: “No, like every other test, this one will come back normal.” “You’ve claimed that there is something wrong with your baby’s brain since she was 9 months old. You already know the answer to this.” The surgery and MRI went well. Lydia was in no pain. I felt gratitude. We came home and expected to hear results within a week. I watched my child play, laugh, and I felt immense pride in her. I was emotionally exhausted from the day’s events, so when Lydia napped, I did as well. I remember my bartering prayers before I fell into a dreamless sleep. My husband received a phone call from Lyd’s wonderful developmental pediatrician at Children’s. I still have Erik’s notes in her medical binder from that day. I’ve said it before; it was a gift from God that E answered the phone. I don’t think my conversation would have been as successful. Her brain showed malformations. Dandy-Walker syndrome…Dr. N said. Agensis of the corpus callosum, he added. It is not degenerative. It is rare. You can find support online. Lydia probably falls somewhere in the middle of the mild to severe spectrum of cases of DW, he said. Continue what you are doing for her. I woke up, saw Erik’s face, and as he read the notes, silent, knowing tears rolled down my face. My baby’s brain...my baby’s brain. What do we do now? Her future-our futures-played out like a film in my mind. My anxiety went to all of the worst-case scenarios. I listened to everything Erik had to tell me. We hugged. I went back into our bed, rolled up into the fetal position(I completely get what they call it that), and felt the world stop around me. Time can stop. You can actually feel your heart break. Grief, even when your child is living and breathing before you, is real. 30 years of faith in a loving, protecting God can be shattered, and you can feel content to leave it as is. I had more emotions that day then I have ever had in my life. Then, minutes, maybe hours later (I’m not sure) there were no more tears to be produced, and in the stillness, I felt it: Lydia was still the precious soul that I carried in my womb for 9 months; the child whom I had loved from the moment I learned that she was growing inside me. She was the infant that I bonded with so strongly, the toddler whom made me laugh and filled me with astonishment. Pictures of her brain did not take any of that away. We could do this. She could do this. I would do this. I got out of that bed and accepted that I might find myself there again. I apologized to my Lord; already knowing that He knew my heart, and that He will never leave me. A realization came to me: He WILL give us more than we can handle, but He will continue to put supports all around us. I felt a calling to write about this journey. Maybe one day I could help others. Loving Lydia was created on August 8, 2013. I don’t make rash decisions-quite the opposite actually. I had to weigh all of the pros and cons of a page like this. I chose to listen to the quiet voice within myself. A storm is rolling in as I write this. It is August 2, 2014. Many storms have come our way this last year. It will pass, and from it, a renewal will be felt. Thank you for reading, almost one year later.
Posted on: Sat, 02 Aug 2014 17:02:06 +0000
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