God has been working with me to process our recent family trip to Washington, DC. It was a tough trip. There were beautiful moments and memories, clouded with really tough behaviors from our girl. The stroke and brain damage she had five years ago still lives with us every single day.
The part of our brains that allows us to control our impulses was damaged in Reagan’s brain. Because of that, it makes processing normal things very hard for Reagan. As an example, being told her shoes are on the wrong feet, might make her scream at the top of her lungs, clench her teeth and storm off. Transitioning from one thing to another, could result in a 15-45 minute meltdown, complete with screaming, hitting and saying things like: “That’s rude, Mommy! You’re a mean mommy.”
Our first night in our hotel had me in tears. I tried for an hour to get my overly tired and extremely strong willed child to go to sleep. It was 10:30 p.m. and no matter what, she wouldn’t listen, talked back and hit me. I hate writing this. I cried so hard, in front of her, and my sobs is what finally put her to sleep and me into a state of shock.
The next morning we walked to Nordstrom Rack to reward myself with a new pair of shoes for keeping my cool the night before, even if I was in tears.
Parenting a child with complex special needs is so hard. It’s rewarding and heartbreaking, amazing and terrible, hopeful and hopeless — all at the same time. I’m amazed that Reagan can say, “you’re a mean mommy” but sad that those are the words she chooses when I have to correct her behavior. I know, parents all over the world have heard these words, we’re no different, except that we are walking against the crowd.
On July 4th, I was walking on Pennsylvania Ave outside our hotel with Reagan screaming in her stroller. Everyone was walking toward the parade that was about to start, and we were walking in the opposite direction and I couldn’t help but think this is our life, upstream, away from the cool parade, distant from the traditional path. It made me sad, but I also know God set us apart for something different.
While reading in 1 Kings 17, Elijah (yeah the guy who doesn’t die) has some bleak things he’s dealing with. First of all, God’s directed him to drink from a tiny brook that’s about to dry up, and also, God said that the ravens will be bringing him food. Cool cool cool…yeah, just up in this deserted place with barely any water and the birds bringing me food, this is exactly how I pictured life. Then the brook runs dry and God’s like go to this new place and you’ll find a widow who can help. The widow is literally gathering sticks to cook her last meal for her and her son and tells Elijah after their meal she expects they will die because they have nothing else left. (You truly should read this story, it’s CRAZY and amazing).
Elijah, the ever so kind gentleman, says, “Go home and do what you said, but first, make a small loaf of bread for me, then bring it to me, then make something for you and your son.”
If this is all Elijah said can you imagine the look of shock the woman would have had plastered all over her face? But he continues, “For this is what the Lord the God of Israel says: ‘ The jar of flour will not be used up and the jug of oil will not run dry until the day the Lord sends rain on the land.'”
The woman had scraps, and God made her scraps last three years.
Can I tell you that the days and nights before this photo was taken I had nothing in me? Can I share that we were about to enter The White House and I was freaking out that she would scream and secret service would ask us to leave? And true story, one minute from getting inside The White House, Reagan said she had to pee. There are no bathrooms. Guys we are parenting on FUMES!
What I am continually learning is that even when what is visible seems like there’s no way out, that it’s too much to bear or that circumstances are impossible, there’s more on the other side that I can’t see. And the same goes for how things look on social media. I didn’t post a lot of our awesome and beautiful vacation photos because the story behind them was not was was pictured. Behind every great picture we took, was a frustrated mom and dad trying to get their kid to listen, eat, not hit us and go to bed at a reasonable hour.
I can either look at my current situation, with Reagan not listening to me, hitting me and scratching me and think, “Well, this is our life, and how it will always be, and there’s nothing more that God has.” OR I an look at my current position through the lens of God who has unfailing love for me. I can stand firm in the fact that either God knows what he’s doing or he doesn’t. And he for sure does know what he’s doing. And he for sure knows more than I do. And I can FOR SURE trust him.
It’s taken me several days to recover from the rollercoaster that was our DC family vacation. And I’ve come to the conclusion that some kids are feral, they are wild, they beat to their own drum that isn’t sold on regular store shelves, it’s in the beyond, section. We’re good parents, and her behavior isn’t an indication of our parenting skills. Oh my gosh, PLEASE remember this when you see a feral kid in public doing a crazy dance, making dinosaur sounds and yelling at their parents. They are FERAL. They are WILD and God made them to be a loud drum, with startling cymbals and a lot of BASS. I don’t know what God knows about our feral child, but he made her and I’ve got to trust that he knows what he’s doing.
Also shout out to friends who love us, and still want to hang out, and plan future vacations with us, even if Reagan pulls their kid’s hair.