Today Aaron is having seizures. I heard the first one on the monitor at 4:06 a.m. and the second one at 5:18 a.m. Aaron would love the fact that my times are very precise, wouldn’t he? He got up this morning for a short time………….took his meds and then spilled all of his coffee after his hand jerked. He felt so bad about it, but I told him it was OK and made him some fresh coffee. He showered and tried to watch a DVD before he got so sleepy that he asked if he could lay back down. His head hurt and he was very tired, both from his meds and from the effects of the seizures. Of course I told him to lay down and sleep.
I turned on the monitor and kept it beside me as I did a few things around the house. Aaron rarely has daytime seizures. I got in the shower and was nearly finished when I heard him through the monitor, seizing. I turned the water off and listened, which was all I could really do. He was fine and I hurried then to finish and go check on him.
He had already bitten the end of his tongue pretty badly during his first seizures this morning. Now he had bitten it even more, and had more blood coming out of his mouth, oozing onto his pillow. I wet a wash cloth with warm water and went back to gently wash the side of his face. He opened his eyes…………and gave me a smile.
There went that door of my heart that I rarely open, coming ajar enough to feel the hurt of this moment and this dear oldest child that God has given us. I blinked back my tears. I don’t want Aaron to see me crying at these times and wonder what is wrong with himself that would make his mother cry. I tried to remember how irritated I was with him last night when I wouldn’t let him put his questionable hands in the tortilla chip bag, but made him let me put them in a bowl for him to eat. He did NOT like that at all and became very grouchy. If I can bring back the irritation that I felt last night, then maybe this moment of pain wouldn’t be so real.
Yet I don’t want to lose the pain………….the awareness that God has given us a special child……………for life. Because if I lose the pain, I may lose my heart of trust in God. I have to trust that God is sovereign and that God had a reason for giving Aaron life and for giving Aaron to us…………..or us to Aaron.
Sometimes I look at Aaron and I think that he should have hung his college degree on the wall and be enjoying a wonderful career or ministry…………that he should be married and maybe have children of his own……………that he should be driving a car……….
Or should he? God has given Aaron his own special life and ministry, if we but see it. I’m convinced that God has a very unique and amazing calling for our special children………….for them to help lead us to a fuller life of faith and trust………….to point us to Christ and His love for us…………..to deepen our relationship with Christ and with others…………..and so many more possibilities that I won’t know until the Lord Himself explains it to me one day.
My dear friend, Wendy, has two sons with Doose Syndrome. What a load Dan and Wendy carry! What a testimony they are to so many of us! Wendy and I have had these discussions about our boys. And in our frail, human way of thinking…………..she and I have decided that God is going to let Elijah and Aaron drive the absolutely coolest cars in heaven! As if it will even matter then, but it matters now and it gives us a chance to laugh and imagine the joy of it all.
We have hope……………hope of far more than cool cars in heaven. We have hope of grace for each day down here on this sad, tired earth……………hope that Sovereign God is with us…………….and hope that one day we’ll see Him, touch Him, worship Him…………with our sons beside us, whole and healthy and happy for eternity.
And no more dirty hands in the chip bag!