I always put off writing until I feel like I have something to say. And for the past few weeks, I had always hoped that I would be able to share good news.
If you were hoping for good news, though, this post may not be very encouraging.
Ben's back has continued to give him pain. So much so that it's become too uncomfortable for him to sit up, walk, or stand. This severely limits his day-to-day options. He needs to be carried. Gently. And helped with absolutely everything. He cannot sit up in a chair, move his body to adjust his position on the couch, or go to the bathroom by himself. He cannot take a bath with his siblings; for the past two nights, Andy has put on his swimming trunks and held him in the shower while I clean him. He lays on the bed so we can change his clothes, much like we did when he was a newborn. Except now he's much heavier and yells when we change his position too much to irritate his back. And we have the added memory of our self-sufficient four-year-old saying, "That's okay, Mom, I can do it by myself."
We've given him two doses of morphine today to loosen his muscles and give him a little more freedom to move.
I cannot even tell you how mad I was at Andy for wanting to give him morphine.
It was as if I was giving in. Admitting that he needed medication to be comfortable. And as his mom, that just broke my heart to feel like we had reached another miserable milestone.
But Andy was right. It's not right for Ben to be in pain, to have difficulty moving. He needed the (albeit very small amount) of morphine to help encourage him to keep moving. To ease his discomfort.
I encouraged Andy to take the other kids to the science museum this morning while I stayed home with Ben. But as they were getting ready, Ben knew they were going to be gone for a few hours and got so anxious that he insisted on going as well. Andy and I hesitated. He can barely sit up by himself, and he can't walk. How would he even make it in the car seat for the drive to the city? But since we knew it was imperative that Jack get out of the house on this rainy day, we consented.
Ben did great in the car and spent the entire visit in the jogging stroller. He slept for the majority of the time, with the seat extended back. It was so nice to get out of the house. Especially for me, who's used to taking my kids out multiple times a week. But since it was our first trip to the museum since the diagnosis, I stifled tears watching Jack and Megan play by themselves at the water table and with the homemade PlayDoh, when usually their brother is right beside them. No one complained, though. Not even Ben.
I know that if God does allow Ben to enter heaven sooner than later, there will be many of these opportunities to miss my goofy and smiley Benjamin. To weep over his absence. Others who have lost loved ones - no matter how old - experience this as well. The first holiday without them, watching an old video of them laughing, the ability to pick up the phone and talk to them... all of these things remind you of your loss. I don't think there is a single person on earth that cannot identify with the pain behind those good memories. Having a young family and one on the way, I can imagine doing many more play dates such as today - the museum, the zoo, the library - and the thought of being there without my sweet second-born makes me so so sad.
You know how people say, "God doesn't give you any more than you can handle."
I know many of you hear that and think, "Gee, I wish He didn't think so highly of me."
But seriously, that phrase has always bothered me.
It wasn't until today that I finally figured out why.
The bad stuff we come across? The bad stuff that plagues our world? Cancer, sickness, accidents... none of it is from God. The Bible says that only good things come from God.
"Every good and perfect gift is from above,
coming down from the Father of the heavenly lights,
who does not change like shifting shadows."
Good things come from God. And He never changes. He is still the same God as the man who walked on this earth more than two thousand years ago. The One who was born to a virgin, did countless miracles and healed countless diseases. The One who was fully human and yet fully deity. The God who is large enough to command the heavens but small enough to walk beside us every single day. This is the God of my family. And He will continue to be the same good God to future generations even after we're gone from this earth.
Bad things exist because sin exists. And we all know to thank human nature, free will, (as well as Adam and Eve) for that lovely introduction into our world.
I know that many people think of God as a nasty overlord, holding his evil remote and just waiting for an opportunity to 'trick' us into ruining ourselves. Or perhaps He just plows through however He wants, manipulating people and events, regardless of how it may affect us pee-ons. But don't worry, 'He won't give you anymore than you can handle!'
Trust me, friends. That is not the God I know.
My God is loving. Compassionate. Gentle. The kind of Father that cries when we cry. That feels hurt when we hurt. And continues to love us even when we don't acknowledge His existence, when we purposefully turn from His Word. He loves us regardless of what we've done or who we are. That's the God that I know. The God that loved me most when I am at my worst.
God made us. And the Bible says that He made us in His image. And He loves us deeply. Every single one of us. What great artist wouldn't be proud of His work? God created the heavens, the earth - the entire universe - as well as everything in it. And the Bible tells us that He was very very pleased.
"God saw all that he had made, and it was very good."
I can imagine His level of satisfaction looking at everything He created out of total darkness. Folding His arms and sighing, thinking how much He enjoyed what He had made. It doesn't make sense to me that that same God would be the cruel mastermind behind our demise.
It's true. God won't allow us to walk down a road that He cannot supply enough grace to sustain us. But we would be very mistaken to think that He was the One that created the situation we had to walk through in the first place.
Lord, please continue to hold us close. Give us the grace we need for each day. I have absolutely no idea what tomorrow will hold, but I will trust You. And I am so grateful for the assurance that You will never leave my side. Or the side of my son, Ben.
Oh, God, you continue to be so good to us.