“Fear not, for I have redeemed you, I have called you by name; you are Mine.” Isaiah 43:1
To be honest, most days I feel like I have no idea what I’m doing. I get up and I don’t know how Carlee’s day will go. Will there be seizures? Will she fall? Will she be happy? Every morning is a mystery. She’s usually quite happy getting out of bed. Sometime between her morning diaper and getting into high chair, she settles into her mood for the day. For someone who likes their day planned to the minute, this is nerve wracking.
Then there’s the day itself. Did she get enough one on one? Did I do the compressions on both sides? Did she get enough calories? How many seizures did she have today? Did we get through all our school work? Was I mom enough for my other four children? Was I wife enough for my husband? Did I spend one minute alone with myself and God?
I don’t always have the answers when I lay down. I question myself into the night. Carlee wasn’t born to me. I didn’t have any time to prepare for what was coming. I have to believe in God’s handiwork, that He crafted me to be her mother, their mother. I don’t know why my babies had to go through what they did to make it to me, but they did, they’re mine. And I want to be enough for them all. I don’t know why Carlee has to suffer. I can’t put it in a cliche, look at all the lives she touching. I’d rather her be pain free and have a normal childhood then touching strangers lives. Even touching my life. She’s taught me more about doctors and specialist and medicine and therapies than I ever thought I know. I’d trade all the knowledge for seizure free days and words from her lips. But there is truth in it. I have more compassion for other parents than I ever used to. I see the world differently. My kids see the world differently. I have more patience than I did my first ten years of parenting. I’ve met amazing mothers, amazing families. Yet, I’d give it all away for her to be pain free.
So I ramble. I write. I research. I vent to online groups. I pray for a cure. I stress. I have anxiety attacks. Then I dust myself off. Do a work out. Doodle a sketch. Read a book. I try to sleep and I wake up and do it all over again. Never knowing what that day will bring.
I trust in this:
“For we are God’s handiwork, created in Christ Jesus, to do good works which God prepared in advance for us to do.” Ephesians 2:10
I don’t know what He saw in me, in my family. But He prepared us long before we knew she was coming. Long before we knew anything about special needs. He prepared us. prepared our way. He knows the ending. And it’s good.