On Thursday evening, Gary and I noticed that Aaron didn’t seem quite like himself. He became lethargic as the evening wore on, even falling asleep sitting up in his favorite family room chair. Then he wanted to go to bed early…..and for Aaron to agree to a bedtime before at least 10:00 is very unusual. It’s like his lunch at 12:00 mindset. Bedtime should not occur before 10:00 in Aaron’s world, so his desire to head on up to bed at 9:30 combined with his tiredness made Gary and I wonder what was going on with him.
Therefore, we weren’t too surprised to hear him having a seizure a couple hours later. It was a very hard seizure, lasting about four minutes. Three other long, hard seizures followed that one during the night. He wet the bed after the second one, bit his tongue during the third one, and I walked in his room at his fourth seizure to find him on the floor. We have no idea how that happened, because he was in a sitting position with his back against his night stand. Blood was coming from his mouth as he bit his tongue again. Gary and I eventually got him back in bed, and then later before Gary went to work he was able to get Aaron a little cleaned up before helping him downstairs to the couch.
Aaron slept all day, with only a few short waking moments when I was able to give him his pills or something to drink. At 3:30 he woke up and told me that he didn’t feel like going to Paradigm. He was so shocked when I told him that it was 3:30 in the afternoon……that he had totally missed Paradigm that day and didn’t have to worry about it. He had no memory and no idea of what had happened.
I don’t tell all this to garner sympathy or to any way embarrass Aaron. I tell these things in an effort to share with others the faithfulness of God in the midst of pain…..the pain of a mother for her son, in our case……the shared pain of parents bearing this burden together………and the pain of fear that often tries to settle its icy grip in our hearts.
This seizure episode for Aaron has been a bad one. In fact, he had another small seizure early this morning. He got up later but wanted to go right back to bed. His tongue is extremely sore and damaged, and he also has a sore throat now. Worry and sadness could easily be my companion this morning.
Sadness was definitely near me yesterday morning as I sat at the kitchen table while Aaron slept nearby. At times like this, I desire to hear from God. I know that the comfort He gives is like no other. I don’t doubt Him. I don’t question why he allows this to happen. I’ve gotten to know Him over the years and I know that He is always loving, and good, and that His sovereignty is beyond my understanding. I trust Him. What I desire is His comfort during the moments when my heart is a little fractured, and my emotions are raw.
I would like to remain free of emotion when it comes to Aaron and his special needs. Emotion hurts. Emotion means that I’m thinking of Aaron and what he is enduring…..and what he’s missing in life……and what the future might hold. But how can a mother keep her son at arm’s length and not at times deeply hurt over his pain?
Such was my morning yesterday. I was hit with the reality of Aaron’s suffering. I cried. I just let myself feel the pain for a few moments and I cried in my hands. And God saw His daughter crying and He comforted me. I love, love, love how He speaks to me through His Word when I need it the most. I’ve started reading Daniel, and there it was. My eyes fell on Daniel 2:22: “…..He knows what is in the darkness, and the light dwells with Him.”
Most of Aaron’s seizures are during the night as he sleeps. I detest that sound coming out of the baby monitor on my nightstand…..the sound of Aaron’s seizure beginning. It jolts me out of sleep and it always fills me with dread. I never get used to that awful sound. And the darkness. Our room is dark, the hall is dimly lit, and Aaron’s room is very dark. I turn on his light, not knowing what I will see, and I stay with him until the seizure is over and I know he is safe.
Then usually I will hear that gasping sound later again coming from the monitor as another seizure begins. The scene is repeated…..the darkness…..the dread…..the fear.
So this verse from Daniel was very special to me. Once again, God reached down to me in my particular situation and spoke especially to me as the loving Father that He is. He knows! He knows what is in that darkness that I face, whether it’s the physical darkness of nighttime seizures or the darkness that fills my soul with fear for Aaron.
And guess what else? Listen to Psalm 139:11-12: “If I say, surely the darkness will overwhelm me and the light around me will be night….even the darkness is not darkness to You, and the night is as bright as the day. Darkness and light are alike to You.”
Those words are so sweet to me. I felt overwhelmed yesterday with hurt and fear for Aaron. It’s a darkness as real as the darkness I face when I am awakened with the sound of his night seizures. But God is there in the dark. He’s the light! There is no darkness to Him. He knows my dark fears and He knows my pain, yet He was there yesterday to remind me that He is light in my darkness. He knows what is in my darkness as I hear Aaron seizing, and as my own heart is seized with sadness and with dread.
I can trust Him with my pain, and I can trust Him with my son. He said that darkness and light are the same with Him…..and that the night is as bright as the day. His promises and His peace are my light in the darkest dark.
So I took our beautiful bright sunrise this morning as God’s personal gift to me. I relished it as His reminder that no matter how often I feel that the light around me will be night, God says, “No way! The light dwells with me….and so do you, little daughter. Now enjoy My light, even when it seems dark.”
We have a good God.