Up at midnight watching the clock turn 1:30 with a very cranky kid challenges everything in you. I don't deal with sleep deprivation well, at all. My prayers have been desperate, crying, sobbing, snotty begging prayers asking God to please PLEASE have mercy on my family and I's bodies and minds. Katie has been sleeping so good until 2 nights ago. We did change routine so maybe it's that, but at 2 am when I changed her diaper I knew her stomach was hurting. A common Spina Bifida problem deals with gastro stuff and bladder stuff. I can deal with her paralysis and the things that go with it but right now the most confusing is to know how to help her have good gut health. In the middle of the night when sobbing crying prayers happen that's when you decide how important and where is your faith.
I love God, but I do not understand His ways. Why I'm up for hours with a screaming 1 year old.... I don't know. Is He still good? Yes. I heard on the radio a man saying he preached about Jonah not knowing if he was reaching a single person then he had a unplanned meeting where he preached on repentance. He thought maybe 15 or 20 people would come... over 500 came and many responded well to his message. THIS tells me that at the heart of listening to the word of God we are reminded we are sinners, saved by grace. No, I'm not saying "oh woe is me I'm so horrible there's no hope." I AM saying. I am not perfect. I can and have been ugly and disgusting. I am repentant and don't like to be that person. I'm grateful that even though I have moments they are getting a lot less than when I was in my early 20s. It is because of Jesus that bridged our way to God that allows us to have obedience that means reconciliation with our Creator. I'm so grateful His mercies are new every morning.
I sit now with while my husband sings and my daughters dance to "I Won't Back Down." Ada has really loved this song for a long time now.
"In a world that keeps on pushing me around. I won't back down. I will stand my ground."
"There aint no easy way out."
Spina Bifida is a huge part of our life. There's no way around it. But I will teach my daughter to not back down. She will be strong. Strong doesn't mean a game face every day. Strong means crying when it's appropriate, being vulnerable, letting others know you hurt but have hope. Strong is choosing to let others have their hateful words but love them anyways. It means walking away when others have hurt you too much. It means standing up when it hurts. Strong means dancing even if you'll look crazy. It means taking Spina Bifida and showing others what to be grateful for. It means having joy when others think pity is easier. She will not be weak. No... She isn't weak.
Her birth has strengthened our family and defined the kind of people we will be in this world. Maybe you've had a defining moment in your life. A birth of a child, a traumatic moment, a death, a choice, something that made you question everything you are. What have you cultivated from that moment? Are you choosing the strength side or have you given up?
I'm not giving up. You shouldn't either.
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