I remember showing Dr. E the video clip the day you were preliminarily diagnosed. I was watching his reaction like a hawk. When he left the room, camera in hand for his associate to view the video, I sat there feeling numb. Holding you. Hoping for the best. Dr. E doesn't tend to be dramatic - so the serious look gave him away. Trying to be glib - because that's what I do when I'm nervous - I said, "Please just tell me it's not Turrets!" He said,"It's not Turrets". I was even more numb after I left the his office. He warned me not to read anything online - the information would be grim. But I couldn't help myself.
I cried -bitterly- as I gave you your bath that night. I begged God not to take my baby from me. I knew you weren't dying. But I still felt like I was losing you. Like you being stolen right from my arms. Kidnapped.
That night my dreams were haunted by babies being kidnapped - I was trying to help reunite them with their frantic moms. I think it's because I felt like I was losing you myself. Or at least the you I thought I had. Jesus & I have talked a lot about that these past few weeks. I'm trying to release my hopes & dreams for you - and to embrace the you He created you to be.
Daddy says he's heard me crying in my sleep for the first time ever.
I woke up with tears this morning. In my dream it was Sunday afternoon. You started having seizures - worse than ever. I remember dream thinking that it was almost a whole week without any spasms! And I was sobbing and holding you. Sometimes when you have a really bad dream your body wakes you up. Mine woke me up. The tears on my cheeks weren't dream tears but very real tears. It took awhile to shake the foggy dream-webs away and realize that I was back in reality. That you did have a whole week seizure free!
I hope that this week turns into months into years into a lifetime! I love you, sweetie!
Comments
Jen
blogs.timeunion.com/austinbenconnor
blogs.timesunion.com/austinbenconnor
this is the story of our journey
We are clinging to each day that he is seizure-free...and even though our minds tell us not to - our hearts can't help but hope! God has brought this little baby so far - we're continuing to trust Him with each new day!
And btw thank you for sharing your story! It's so moving to listen to other families who are living through this - and to see their strength! It helps the rest of us!
...danielle