The Amazing Jacob List

It’s been almost exactly a year since Jacob was diagnosed with epilepsy.  So much has happened in the last year, but this post isn’t about all of that.

We had his third EEG a few weeks ago, but this post isn’t about that, either.

Forgive me as I muddle through some pretty intense emotions and figure out what this post is about.

The situation I have on my heart right now is that Jacob is having trouble.

Trouble at school.

Trouble at church.

Trouble at gymnastics.

Trouble anyplace where I leave him on his own to navigate the world.

He’s six years old.  He should be able to play nicely, be polite, do his work, and yes, maybe get frustrated when things don’t go his way.  Most 36 year olds are still working on doing well at that list of things.  But, he should be doing at least okay with most of the things on that list.

But, for some reason, he just isn’t doing well.  Every time I pick him up from school, I get one of the following statements:

“Jacob had a hard time today.”

“Jacob couldn’t keep his hands to himself.”

“Jacob wasn’t kind to his friends.”

“Jacob couldn’t stay on task.”

“Jacob is causing problems in the classroom.”

“Jacob spent a lot of the day whining.”

Maybe once or twice a month, I will get a positive report.

Nothing has changed.  Nothing has changed at home.  Nothing has changed in his diet, in his health (that we know of), in his sleep patterns, in his medication, in his life.  Seriously.  Nothing.  There is nothing concrete that can explain what is happening right now.

Of course, with epilepsy, there is the chance that he has other learning disorders, which we are in the process of testing him for and maybe one of those things will pop up and will be the answer.

But, in the meantime, I’m struggling.

I feel lost.

I feel tired.

I feel frustrated and worried.

I want to fix this for him.

I want to help him.

I want to understand why he has such a hard time.

I feel helpless.

I feel powerless.

I am sick of not hearing good things about my little boy.

I get it.  His teachers don’t have time to do anything but address the problems.  But, it does hurt and it is hard to be constantly faced with the things that Jacob is doing wrong.

He is not a bad boy.   He is not a mean boy.   He is not unkind.

I know these things.  I worry that others don’t know these things or that Jacob might forget that he is not those things.

Jacob is so much more than epilepsy or ADHD or whatever else is going on inside of his little brain.

I don’t want him to feel as lost in it as I feel right now.

I’m sitting at my dining room table, writing and crying and praying for my little boy, and I’m strongly reminded that I don’t belong in the Normal Group.  Like it or not, I’m not like most mothers.  I don’t get to drop off Jacob in the morning and assume that I will pick up a smiling, happy boy who has basically done the right thing at school.  I don’t get to go to  church and not wait for the tap on my arm.  I don’t get to go to gymnastics and read a book.  I have to watch every move so that I can understand why he might be asked to leave this time.  I have a child with Special Needs, so I don’t get to be like all the other mothers.  I carry an extra burden and I have to try extra hard, all the time.

I am tired and discouraged and so freaking sick of all of this.

But, I know I don’t get to be these things all the time either.

If I can expect more out of my boy, than I have to expect more out of myself.  I can’t let my brain get to such a dark place.

I have to keep praying (and crying, if necessary.)

I have to keep encouraging him.

I have to keep being compassionate.

I have to keep defending and helping.

I have to remain patient.

I have to be diligent to care for myself so that I can care for him.

I do not see signs of this getting better or the proverbial light at the end of the tunnel.  I have to remain hopeful that “better” is out there and that the end of the tunnel will come.

I think maybe the best thing I can do for myself is to write down five things that Jacob does well or wonderful things about him.  I need to do this every day.  Part of this might just be that I need to re-train my brain to know what it knows even when I don’t hear it from other people.

Here is today’s Amazing Jacob list:

  1.  Jacob is amazing at walking like C3PO.  It’s very funny and wildly accurate.
  2. Jacob is compassionate when I am hurting.
  3. Jacob has the most infectious little laugh and smile.
  4. Jacob has a sweet little heart and I see it every night when we pray for a different friend.
  5. Jacob is amazingly stubborn, which will eventually turn into perseverance and will allow him to accomplish so many great things.

Whew.  That helped.   A lot, actually.

What will also help is if I go clean the kitchen.  And, probably, throw away the remaining Halloween candy that I can’t stop eating.

This entry was posted in E is for Epilepsy and tagged , , , , , . Bookmark the permalink.

3 Responses to The Amazing Jacob List

  1. cheekypinky says:

    He is a lovely kid, and I’m glad to be his Auntie. I wish I could be near you to help out when these things keep piling up. You will get through this–you’ve instilled wonderful character traits in Jake, and you are doing a great job of being his mom. He will also get through this, friend. I love you. I wish it weren’t so hard.

    • Janet Wagner says:

      Oh Mary, I will be praying for you to have the perseverance you need for this! and the wisdom! and the patience! Hugs to you and Greg and your swee Jake!

  2. Connie Marie Simpfenderfer says:

    Mary, thank you for sharing. This I know for sure, Jacob is lucky to have you. You’re right, Mary, you’re not like most moms, you’re special. I truly believe God only gives special kids to special moms.

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