Aaron had a seizure shortly after 4:00 this morning, so I kept him home from his day group today. One seizure not only makes him feel bad when he gets up and about, but one seizure can also mean more seizures to come…especially drop seizures that are so dangerous.
As I went sleepily up the hall this morning to be with him, I was mentally trying to remember what my day held that would need to be changed. Fortunately, today was just errand day for me…nothing critical that had to be rearranged, like a doctor appointment for me or for Aaron.
Still, the point is driven home yet again that I am always on call when it comes to living with Aaron. Any caregiver knows what I mean. It’s very difficult if not impossible to commit myself to activities that would demand my presence, like a job or even some volunteer positions. And that’s OK for me, thankfully. God has blessed me with the privilege of being able to stay at home with Aaron.
Sometimes that blessing, though, can turn into a struggle for me. Aaron isn’t always easy to care for. Oh, I can handle seizures and wet bedding and interrupted schedules and doctor appointments and all the rest that goes along with life…life with Aaron.
It’s his behaviors, at times, that wear me and Gary down. Aaron’s ups and downs due to his autism can be exhausting and so very frustrating. Then when I erupt, along comes the guilt and the “I’m so done!” attitude. My own ups and downs are personally exhausting to me on so many levels.
So today, in an odd kind of sad way, has been a reprieve for both me and Aaron. He is far happier when he has no place to go…no schedule to keep…no expectations. And happy Aaron equals happy Mom – though my heart is always sad to see his seizures and the toll they take.
One toll is that Aaron often loses his taste, as he says, after seizures…and today was no different. Nothing interested him for lunch until I mentioned cream of chicken soup. He slurped happily while watching a bit of the old Incredible Hulk television series, leaning back occasionally to hold his head.
Later, I sat down beside him and asked this magic question:
“Aaron, would you like to go get a milkshake?”
How Aaron loves milkshakes!
“Yeah!!” he answered as his eyes lit up. “And can it be a hot fudge?”
I agreed to hot fudge, and Aaron was happy and very ready to go.
When I later told him it was time to leave, he came to my closed bathroom door with his report.
“Mom,” he said. “I have on my shoes and my glasses and my watch.”
Bless his heart. Preparation details for these excursions are very important, even if Sonic is only one mile down the road.
When we got home, Aaron sat on our porch glider with his yummy hot fudge milkshake while I watered the porch plants and swept away some unwanted spider webs. Then I settled in beside him.
It’s a beautiful day today, and our time on the front porch and out in the yard later was so sweet. We examined the veins of the flower petals he pulled off my orange geranium. We talked about the dragonfly that landed near us…about the squawking blue jay we heard…about mosquitoes that drink our blood…about the squirrels that steal all our pecans…about the bag worms that haven’t built any web nests this year…about the bush that needs pruning yet again…and about the molted remains of Cicadas he found.
We examined mushrooms in the back yard…small, medium, and large.
And watched honeybees in the Rose of Sharon blooms, laughing at their legs all fuzzy with pollen as they flew around from bloom to bloom.
We also rocked in our front porch glider. Well, we attempted to rock. That’s because rocking with Aaron in the glider is either smooth and fun or is more often a lesson in frustration.
You see, Aaron has a hard time keeping a joint motion going as we try to rock. I go forward and Aaron is going backward. Or he keeps his feet locked on the ground, stopping the motion altogether. When he does master the idea of rocking simultaneously, he goes too fast and furious.
Smooth gliding with Aaron for any length of time is nearly impossible because he doesn’t cooperate. He’s not trying to be difficult. He just doesn’t have the motor skills to master the art of joint gliding, so we end up with an awkward mess most of the time. It takes time and patience on my part to hang in there with him and make it work, at least part of the time. It’s often best to just stop for a few seconds, and then try again.
In my walk with God, I’m often like Aaron on the glider. I don’t want to be. I don’t mean to be. But oh, sometimes I am so out of sync with God and with who and what I know Him to be. This is true especially in relation to our life with Aaron.
Over the years, God has worked and worked on me to show me that His ways are best, always. Not easy, but best. This path upon which God has set me is of His choosing.
But you know, I get tired. I find myself saying more and more that I’m done…just done. Yet that’s when God, if I get still and listen…like when I read His Word to me and I pray it back to Him…says to me that He understands. He knows tired and He knows being done.
What I need to know is that He is God. I just need to be still…to quit striving…and to know that He is God (Psalm 46:10). Sometimes God just needs us to stop the rocking, rest a spell, and then pick it up again.
And I need to let Him do the leading. It’s a mess when I take over.
I do that by trusting Him, obeying Him, confessing my failures, and looking at Aaron as a gift of God in our lives.
God doesn’t expect perfection from me, but He does expect cooperation if I want to live in peace and joy. Peace doesn’t come by my surroundings being what I want them to be. Peace comes to me despite my surroundings so often being an awkward and frustrating mess.
“Just be still now,” God says. “Quit trying to be the lead as we’re on this glider of life. I’m right here beside you. Let Me lead and you follow.”
“Lead me in Your truth and teach me, For You are the God of my salvation; for You I wait all the day.” (Psalm 25:5)