The Reality

I was awakened early Sunday morning to the unmistakable sound of Aaron having a seizure.  I turned the baby monitor on my nightstand down and mentally checked the time as I got out of bed and headed for his room.  I have to chart Aaron’s seizures, writing down the time they occur and the duration.  He would love the fact that I note the time so precisely………the seizure began at 4:57 and ended at 4:59.  The second seizure was two hours later, after we were already up, and again I heard it on the monitor that I had put beside me on the kitchen table.  After a while, Aaron got out of bed and slowly made his way downstairs, where he told Gary and me that his head hurt………and we told him about the seizures, which of course he never remembers. 

He had a normal day, but was lethargic and rather quiet.  Then at 2:30 he decided to take a nap, and around 3:30 I heard another seizure – unusual for that time of day.  After such a hard day, I was happy to take him to Sonic that evening for his favorite hot fudge milkshake.  When we got home, he put the milkshake in his blue bowl, of course, and sat there slowly enjoying it.  He was very quiet as he sat there sipping his milkshake.  He wasn’t doing his usual talking a mile a minute about everything under the sun……..and even though when he IS talking a lot I sometimes wish for quietness, this silence now was unnerving to me.  As I looked at him hunched over his favorite milkshake, I felt a keen sadness.  I knew that the reason he was so quiet was because he didn’t feel well……….and he didn’t feel well because of the seizures………and we don’t know why he has seizures………and we can’t take them away.  He just looked very alone and vulnerable as he quietly sipped his milkshake.

He wasn’t through with his milkshake when he stood up and groaned.  At first I thought he was just full, or maybe had brain freeze from drinking too quickly……….but he then told me that his stomach hurt.  Stomach aches after seizures aren’t unusual, so I wasn’t alarmed.  He lay on the couch, and I turned to go upstairs and get his blanket.  “Mom?” he asked as I headed for the stairs, “Will you get my black fuzzy pillow and my black fuzzy blanket?”  I didn’t correct him and tell him that his blanket is brown because I knew it didn’t matter at all.  When I brought the blanket back, he was giving Gary instructions about what to do with his milkshake.  “I don’t want it in the freezer.  Will you put it in the refrigerator?”  And soon Aaron was fast asleep, a little after 8:00 on a Sunday night.

As I sat there looking at him, with football on the TV screen………and Aaron having asked me before he fell asleep about which team I was “voting for”……………I again felt such sadness.  Sometimes the reality of Aaron………of his epilepsy and of his autism and just of his life in general…………sweeps over me in waves of sadness.  As his mother, too, I am pulled to him and filled with compassion for my son.  But sometimes it goes beyond compassion to just plain old sadness………..lump in my throat, tears in my eyes sadness.  This was one of those nights.

I sat there, aware of the football game that I had wanted to watch, but more aware of my boy on the couch……….sleeping when he should have been drinking his favorite milkshake…….having seizures when he should have been young and vibrant……… at home with Mom and Dad when he should have been out on his own.  I know not to go there in my mind, at least not for long, for it serves no purpose.  Yet sometimes those thoughts do come and they do stay longer than I intend……….reminding me of Aaron’s reality, and ours as well. 

As I listened to Aaron’s deep breathing and watched him sleep, I thought of other families and other children and other situations.  I could list so many people that we know who have very serious problems in their lives.  I know that Gary and I are so blessed, for things could be far worse for Aaron and for us.  I wonder how some of our friends handle the stresses and the heartaches that they daily face.  So many people with realities that seem almost impossible to fathom. 

I remember being in Wal-Mart one day several years ago and coming upon a group of special needs adults on an outing with their staff.  It hit me almost like ice water in my face that now my son is one of these special needs adults who goes on outings.  He is one that you may see in Wal-Mart or the mall or at the theater.  And believe me, if it was Aaron, you would probably hear him as well.  But really, I mentally shook my head in disbelief.  I never saw it in quite that light before.  Our bright-eyed-at-birth Aaron who had all the promise in the world…….our first-born…………our son………was one that people now see with his special needs group out in town.  And while we love and accept Aaron, and we are very thankful for what makes Aaron    Aaron………well, mostly…………it was just a very firm reality check for me that day.

For the past few days I’ve been thinking about what I was like when I was young and life was full of promise.  High school and college days were wonderful.  All of us had so many good times with all the fun that goes along with youth.  I remember nights in the dorm with my girlfriends as we talked about boys and dating and marriage.  No one ever thought about facing life’s serious issues someday.  If such things ever did happen, it would be very far away……..and would probably happen to someone else……….never us.  Later, we were starry-eyed brides with our handsome grooms…….or single with a career or ministry.  Many of us shared news of babies and jobs and life. 

None of us ever dreamed about cancer…….saying goodbye to a spouse or child way too soon……..divorce………losing everything……….wayward children………a special needs child.  And I know that what we tried to teach our children, and what I tried to instill in girls I have taught in Sunday School, is very true.  We must have our knowledge of Who God is firmly rooted in our hearts before the realities of life hit us full force. Know God.  Know His character.  Know His love.  Know His promises. 

Then some night when you’re looking at your son laying on the couch, like I was, and you’re struck with the harsh reality of how things really are………….or you’re standing beside a coffin………or you’re looking at divorce papers…………or you’re reeling from yet another heartache caused by your wayward child………..or you’re voted out……….or you’re signing foreclosure papers…………you can reach out and grab the only absolute that is there for that moment.  God, and Who He is.  Maybe you’re even angry at Him, and don’t understand anything at all……….but you do know that God is Who He says He is, and that He will be all that you need at that moment, and for the moments still to come. 

Learn it early and learn it well, because if you live long enough you WILL need to hold on to this God Who loves us more than we can ever love another……….even more than we love our Aaron.   

Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

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