Jessi is very sweetly sharing her space with me today so that I can share with you the moment in my life when I needed God's grace more than ever. V (which is what I call her over where I blog) is a perfectly healthy and happy girl, I even have a letter from a specialist explaining so. This is the story of before that letter. I just want you to go in knowing that there was a mistake made in diagnosis. Or she was healed (which is what I believe).
A little over five years ago, I had a baby girl. And on the day were were to leave the hospital, my whole world came crashing down.
I still don't exactly know what prompted them to do the ECG that led to LQTS diagnosis, I just know that one moment I was sitting there complaining about how long it was taking to discharge us, the next I was listening to our pediatrician explain that she had been transferred to the NICU with a non-curable heart condition which basically has two symptoms - fainting and death.
I remember walking back from the NICU at one point, trying to hold back tears while hearing the parents of healthy babies coo and ahh. I hated them. I hated their perfect babies. I hated God for letting this happen to me. And I told him so. The chaplain who came to visit cried as I explained how I felt. He had lost his own baby girl days after she was born because of a heart condition. He wanted me to be grateful. Grateful for this baby who wasn't perfect but who was still here. And I wasn't. I couldn't be. I looked at her and my heart swelled with love at the very same time it shattered around the room. Every single time I looked at her, I thought "I failed in the process of making this baby. I had prayed that she be smart, not that she be healthy". I failed when I wailed, "I can not do this. I am not strong enough. I am not brave enough. I can not love her and lose her. I can not." I failed when I couldn't look at her with her imperfect heart and beam with joy that I had her now.
I didn't trust in Him, even as I prayed for him to heal her and called others to pray as well. I didn't believe in His grace. I didn't believe she belonged to Him. I didn't believe she was created perfectly by Him - even while I repeated, Psalm 139:13 over and over in my head. I failed. And I am humbled by His love for me in that moment. Even as I pushed against him with all my rage, with every vile, venomous, hateful word I had in my heart - He loved me. He never once looked at me and said, "Her heart is damaged, I can not love her and lose her." He was strong enough and brave enough and He loved me, perfectly without failure - even as I failed.
And He loved her too. When my healthy, spirited five year old girl screams she hates me because one thing or another didn't go her way, my prayer is to have His patience. And His unfailing love. And I will fail. But He won't.
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