Special Needs Mama

The last few weeks have had me mulling over the life of the mother of a special needs child, especially the mother of a child with epilepsy.  When Jacob had his grand mal seizure 18 months ago, I remember praying that it would be “just” epilepsy, not a brain tumor or something else really scary.

I’m still glad it wasn’t a tumor, but I had no idea what I was talking about when I was hoping for epilepsy.  Even though the road over the last year and a half has been harder than I could imagine, I have learned some pretty incredible lessons.

I have learned that it is possible to go from zero to panic in less than two seconds when Jacob has a seizure.

I had to laugh when I went to the medicine cupboard and realized that I could find the diastat (medication for if Jake has a really bad seizure) faster than I could find neosporin.

I have learned to care less and less about the way people think about my parenting skills.   For instance:

•  When I say, “Is your brain bothering you right now?”
• When I wave my hand in his face and he yells at me, “Mom!  I’m not having a seizure!”
• The time I had to sprint like a marathon runner down the hall of the church when I got called to Jake’s classroom and I thought it was because he was having a seizure.  (He was just being an a-hole, by the way.)
• When I worry more than other parents.
• When I have to give an explanation of Jacob to everyone who cares for him and have to remind them, many times, that I am not just a helicopter parent, that they really do need to shut it and listen to what I have to say.
• When I get irritated with people when they say, “You worry too much.”   Seriously, the fact that he goes to school at ALL means that I don’t worry too much.
• I let him dress up as just about anything, anytime, anywhere because he wants to.  And, I happily say, “nope” to the skeptical question of “Is he going to a costume party?”.
• When I have to decline offers of out of town morning trips because I need to stay within a 20 minute radius of school.
• When I play with him on the playground if he goes higher than five feet up.

 

Being the mother of a child with epilepsy means that every time his bed creaks in the middle of the night, I run to his room to be sure he is okay.

And, every morning, part of my clenched heart lets go when I hear his voice because it means that he is alive.  Not every family with an epileptic child can say that.

It means that when we were talking about Jacob’s birthday party and who he wanted to invite, at least half of the grown ups he talked about were part of our medical team.  Even if they can’t come, I will absolutely invite them, because they deserve to know that they have done a good enough job that a six year old boy wants them at his party.

It means that I make endless phone calls, have filled out more paperwork on Jake than I did when we bought our house, I have to fight harder and for longer than  parent of a regular kid, just to get him the basic care that he needs.

It means that because Jacob doesn’t have the most common type of seizure, the one that everyone knows, some people think that I am making it all up.

It means that every month, I have to hold Jacob down while someone takes blood to be sure that his internal organs aren’t compromised.  Man, there is no relief like the relief I feel when all his tests come back normal.

It means that every three or four months, I have to keep him up almost all night, drive an hour to Sacramento, hold on to him while they glue electrodes all over his head for an EEG, and then pray that I won’t fall asleep on the way home.

Yes.  There are hard and ugly things.  But, there are some great and wonderful things as well.

Over the last 18 months, I have found out how much I can endure with grace and strength.  I also know exactly where my tipping point is and when I need to go away and not come back until I can be nice.

I care less about the little stuff.  You want to wear a costume to Target?  Sure!  You want to track mud in the house?  Whatever.  You want to watch The Incredibles for the 20th time?  Let’s do it.  You want to fart in my car?  Okay, just as long as you roll down the window.  You want me to put your hair in ponytails before we take the dogs for a walk?  Let me get the rubberbands.  You peed on the wall in the middle of the night?  I’ve got wipes for that.  You want me to go home so you can walk into school all by yourself?  That’s fi….oh, no.  That’s not fine.  But, I’ll do it anyway…sniff sniff.  C’mon, Mom.  You can do this!

I’m strong enough to know that I can be Wonder Mom whenever I need to be.

I CAN hold down my kid when he cries that he doesn’t want to do bloodwork.

I can wait to cry until I am by myself.

I celebrate funny things like Jake not getting mad during homework time and that he had a “yellow day” at school (the second best behavior code) and that he got dressed in five minutes instead of hanging out in his underwear for ten minutes and then yelling at me that he IS getting dressed.

I’ve learned that letting Jake dress up as a doctor makes everyone smile, especially the parents at the hospital who are not having good days.  Seriously, look at this guy:

 

I’ve learned that superheroes come in tiny bodies.

 

And that as hard as EEGs are, my little guy always  gives me a smile.

I’ve learned that there are things that can make me laugh really hard, like this shirt that I want:

 

And things that can inspire me to be a better person and a better mom:

“She stood in the storms, and when the wind did not blow her way, she adjusted her sails.”

 

No, I had no idea what I was asking for when I prayed that Jacob would “just” have epilepsy.  Am I sorry he has it?  Yes.  Do I pray for it to go away?  Absolutely.  Am I thankful for the lessons we have chosen to learn in the midst of fear and pain?  Of course.  Am I utterly grateful for the people who love and support us?  More than you will ever know.  Does that mean that you can fart in my car?  Only if you roll down the window first!