Parents of Seizing Children

We took our daughter to the neurologist’s office today.  It was more packed than I’d ever seen it.  A bearded father with his daughter of maybe eight, who was hungry and having a hard time doing the ketogenic diet.  He looked vaguely latin, his beard was closely trimmed and he looked like someone who hadn’t planned on ever spending so much time in a treatment center for epilepsy.  When he was younger, he probably just thought about cars and girls.  Maybe he excelled at a sport.  He never thought he’d be spending all those hours he used to spend training figuring out what his daughter was going to eat, measuring it out, weighing it precisely and then trying to get her to eat it.  This hadn’t been part of his plan.  And yet here he is.

Inside, an older woman with worn, leathery skin sagging off her face and hard, still bright eyes like ball bearings, stands in line presumably to pay for her son’s session with the doctor.  We hear a tremendous thud and she and all of us turn towards the room it came from.

“It’s OK,” she says, to everyone.  “It’ll be alright.  Donald’s had a seizure.  He fell down.”

People seem confused for a moment.  Even though everyone there is intimately familiar with one kind of seizure or another.  Someone asks if he’s alright.  The mother, still standing at the counter, answers: “He’s just lying there.  He’ll be OK.  He can’t get up and walk, and I can’t leave my spot here...”  Perhaps she then realized how silly her reasoning sounded in the open air, or that nobody there was going to take her spot.  She went to the door of the office and said something to her son.  A nurse came and checked on him.  The head neurologist opened a door and told someone “Donald’s just had an MES.”  

The mother came back to the counter and finished settling up.  Someone had helped Donald back up to the chair he had been sitting on, but he was arguing with them about something.  “You’re not at home now” the person was saying.  “You have to sit in this chair now.”

A few minutes later, Donald came out of the office, a huge, lumbering man with glasses strapped to his forehead.  He walked toward the room across from the office he’d been in and now his mother did not hesitate to leap after him.  “Donald!”  She yelled, “go back in there!  You need to sit down!”  But he kept walking into the other room, the dark room.  “The light hurts my eyes in there!”  He cried out.  Finally, she let him sit in the dark room while she finished up at the desk, and after a while he came out again, stepping into the now narrow hallway where we all stood.  I became nervous and got ready to leap out of the way should he have another seizure and fall against me with my baby girl strapped to my chest.  

His mother was not tiny, but seemed so next to him.  What must it be like for her to care for this lumbering man nearly twice her weight, to go out in public with him never knowing when he might collapse or whether she could help him if he did?  To be surrounded by people who couldn’t possibly understand what her life is, and who silently pass judgment on her compassion, on her love for her son, when she behaves in ways they can’t grasp.  When she goes through the acts that have become routine to her, and she treats them as routine, those around her gasp and go silent.  

Another mother is there, with her husband and their daughter, a young woman who appears to have cerebral palsy.  She stands rocking back and forth, her arms up as if preparing to type, her eyes not clearly focused on anything.  Yet she speaks clearly and coherently, and I find myself wondering:  Will that be my little girl one day?  I don’t think so, her issues are different.  But the parent of a child with “special needs” can't help comparing, and wondering.

 

Comments

[Michel Santos]

The idea of glimpsing into the difficult lives of others, or into what might become is quite moving. Thank you for sharing.

I sincerely hope that your daughter's seizing will be manageable for her, you, and your family.

[Bretigne]

Thanks Michel. We've actually been very fortunate in that our daughter's seizures suddenly stopped nearly a year ago. We were doing a number of therapies, so we don't know which (if any!) were effective, but are very grateful that she is not having them now!

[Michel Santos]

Oh, wow, that is great and fortunate news. Congratulations.

[Bretigne]

Thanks!