motherhood · special needs

Perfectionism, Plans, & the Hero

I’ve been avoiding it. Writing. Ugh. 

The blog has gotten a lot of unexpected attention lately and my perfectionism proceeded to burst open the door of the dark closet I tried to shove it in to and strut into the room like the annoying self-centered thing that it is. I started worrying about if it was good enough- if I was good enough. I began questioning if I was doing the right thing and if I was really ready to share so much of my heart with so many people. 

The devil does that to us! He takes what God has led us to and tries to pollute it with worry, fear, anger, anxiety, and doubt. All it takes is one simple, sly question: “Did God really say that?” Just like Eve staring at that forbidden tree in the garden I looked at my blog and wondered if God really did say that it was ok for me to be this vulnerable. Is this really what he wants me to do? 

Yes. Yes, it is. 

Thankfully, God’s plans are too big for the devil’s silly little questions. God takes what Satan meant for evil and turns it into something beautiful. Satan had me hiding myself in the security and obscurity of my cocoon, but Jesus is turning me into a butterfly! 

So, in an effort to continue with transparency, I must confess that I have been freaking out over the last week. I realized that my son’s first birthday is in a matter of a couple weeks and I’m so nervous!!! (That’s right, I used three exclamation points. It’s that serious.)

Each month since Little J was 4 months old I’ve gone into his drawer to pull out his monthly milestone stickers to take his picture and had to move the sticker that reads, “I’m sitting!” back a month (I had assumed I was growing a super baby who would hit milestones early when I originally arranged them). Eventually, I also had to move back the stickers that say, “my first tooth” and “I can walk”. But, each month there was hope. “Next month he’ll be able to sit up. He’s got a whole new month ahead” Every night we pray with him and ask God to grow his brain and allow it to rewire itself around the damage. Surely he’ll be sitting up soon. But now, he’s almost one whole year old and there are no more stickers to hide the missed milestones behind. Reality sets in a little deeper as hope seems to taper away. 

Overall, I’m at a pretty good place of acceptance with our baby’s diagnosis, but new things come up sometimes that shove me back into uncertainty’s corner. For example, when adoring strangers in Walmart ask how old he is, I’m starting to get those looks when I answer that he’s 11 months old. You know, those “is something wrong with him” looks. The look that people get when they’re trying to figure out why your almost-one-year-old isn’t able to sit up properly in the buggy or make eye contact no matter how high pitched they make their voice or how much they wave their hands in his face. They want to ask more, but don’t out of politeness. And I’m glad, because I haven’t figured out what to say yet. I know that these occurrences are only going to increase over the next year. That makes me so nervous! I hate seeing people look at him differently. 

Here’s the good news, Walmart now offers grocery pick up for free so you can now avoid those pajama panted strangers! Just kidding! The real good news is that I’m learning a lot about what it means to give and receive grace. That fear begins to taper away when I realize the good that will come. I know that I will have so many opportunities to educate people on cerebral palsy, infantile spasms, and cortical visual impairment. There will be so many doors opened for me to share God’s story through J’s story. I can be an encouragement to other moms. Also, Walmart really does offer free grocery pick up (*This is not an endorsement for Walmart. This statement has not been evaluated by the FDA. This sentence is not gluten free)! 

Crazy things have happened to us through the last year and a half: lost jobs, broken vehicles, busted TVs, dead AC unit, emergency vet visits, and all of J’s medical issues. But God has come through in even crazier ways: decreased mortgage insurance, unexpected refunds, new jobs, gifts from family and friends, awesome doctors, and our amazing baby boy. When the bad happened we tried over and over to be our own heros. We would think, “what can we do? What’s my next move? How can I get the money? What can I do to fix the problem?” And all along, God is working to show us that we can’t, but HE CAN! He is the only one who can truly save us from all these troubles. He provided money when we thought it was impossible. He provided treatments for J that weren’t locally available just six months prior. He led us to jobs at the perfect time. He provided a way for a new AC unit. He provided vehicle opportunities to keep us out of debt. He even provided us with friends who had extra TVs they weren’t using, because he cares about the little things, too. He’s the real hero. And he has spent the last year and half proving it to us over and over again! He knew the trials we would face and he’s taught us to trust him for what we need. He will keep teaching us to turn to him and trust that he will provide. Even when there is no way, God makes a way. 

“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” ‭‭Philippians‬ ‭4:6-7‬ ‭NLT‬‬


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