i remember everyone asking us how we were doing it. how were we still working? how were we staying happy for the other kids? how were we handling the stress of 2 and 3 doctor's appointments a week? how were we even functioning? the answer was, we weren't. well, i should clarify... jimmie was, but i wasn't.
sure i was going to work each day and to church twice a week. and i was cooking, cleaning, doing laundry, taking care of the kids, helping with homework, potty training, going on walks, swinging swings, and riding bikes. i was going through the motions. but inside i was a mess. i wouldn't say i'm a control freak (even though i totally am!), but i'll readily admit that i like things to be ordered and a plan in place. my only sense of control in all of this was that i surrounded myself with information. i knew the pages of the american heart association's website like the back of my hand. i would go to the cardiologist and keep up with the techs while they tested me and her. i knew what our treatment plans were. i knew what the risks were. i knew that the busier i was, the less i had time to think about the reality of what i was going to face. but i wasn't fooling myself. i knew i had no control over whether she lived or died.
i remember the night i finally allowed myself to grieve. it was about 2 weeks before she was born. the doctors had just reran all the same tests they'd initally ran at her diagnosis to be able to compare. i'd fully prepared myself to hear them say that they couldn't find anything wrong, that she was perfect, and that life was going to be perfect now. i was soooo wrong! all the defects were there, some even more severe than they had once thought. she weighed just 4 pounds, which was terribly small given that i was considered full term at that point. it was a day full of emotion, the world spinning way too fast, and that all too familar sense of no control.
i remember coming home after work that day, going upstairs to my room, and laying down. i remember thinking so selfishly to myself that i didn't want to have to live through this. i didn't want to have to watch her go through surgery after surgery. i didn't want to have to see scars all the way down her tiny chest. i didn't want to have to go through any of it. i just wanted it all to go away. i was sobbing into the pillow, when as clear as could be it came to me... the sooner i accept the fact that she was going to die the sooner i could get on with being a supportive and loving mom. she was going to die. each of my kids are going to die. jimmie is going to die. i am going to die. emma was going to die. whether it's when she's a minute old, a day old, a month old, a year old, or a hundred years old. she is going to die. and i don't have any control over that.
i grieved for my little girl that night. but it changed me. it changed my outlook. she wasn't just my baby. she was His baby. she was in His hands. He could heal her, or He could take her home. He could make this all go away, or He could simply hold me through it. i would wait. i would let Him have control.
Hebrews 11:1 Now faith is being sure of what we hope for and certain of what we do not see.
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