Struggling

It would appear that Jackson’s seizures are making a comeback.  And with it brings this constant worry, this ache in my stomach, this scary feeling that something awful will happen to him, that he will regress and lose all the progress he has made, that he will go back to being miserable from the constant seizing, but most of all that I will lose him.  I know it is an irrational fear.  I know I have no control over what happens, but I just can’t stop worrying. 

My husband said to me that I just got too comfortable with Jackson not having seizures.  Damn straight I got comfortable.  It was so easy to watch my kid become a happy, alert boy who was finally making progress.  Not seeing those nasty, unforgiving seizures take over Jackson on a daily basis was elating.  I knew on some level they were still hiding in there.  That one day they would reappear.  The neurologist has always made it clear that Jackson will never really be seizure free.  That because of his brain malformation seizures will plague him throughout his life.  I just wanted to forget them for a while and enjoy watching him being a happy little boy.  I needed to feel happy too.  After a couple of years and wondering “Why my kid?” and watching other parents enjoy their “neurotypical” children’s success, I was desperately needing to be happy for a while.  Maybe that is selfish or maybe that is a normal response to this different mothering experience I am having.  Who knows.  Either way I got used to it, was comfortable, and by god I was happy.  And now here we are again.

In July Jackson has 3 seizures so we upped his medication.  He had one in August, one in September (that lasted 10 minutes) and then Jackson had a seizure last week while riding horses.  We immediately got him off the horse.  Laid him down in the back of the car and waited the 7 minutes it lasted.  I of course didn’t have the medication we are supposed to administer if a seizure lasts more than 5 minutes, and we were far outside of town on the ranch.  The medication is now permanently in my purse and travels with us wherever we go.  Jackson fell asleep right afterwards and took over a 3 hour nap that day.  It really wore him out.  But he bounced back to his happy self by that evening.  Then 4 days later he had another one, this time in the bath.  I got him out and laid him down on the floor, his breathing was not good with this one.  He stopped breathing a few times.  His lips even turned blue.  The seizure lasted 5 minutes.  But this time he was having trouble afterwards.  He went right into a high fever, his eyes were glassy and red, and he just wasn’t really responding to me.  After a few minutes I was worried that he was in trouble.  I got all 3 kids in the car and we headed for the ER.  By the time we got there Jackson was just hysterical.  A swarm of nurses and doctors were in the room working on Jackson and thankfully a wonderful woman came and took Daniel and Sylvia to a different room to watch Finding Nemo, color and have some snacks.  (After we were discharged and headed to the car, Sylvia says “That was fun!” and Daniel said “Yeah, really fun!”  I guess I don’t have to worry they were too scarred from that ER visit.)  They gave Jackson some medication to calm him down and then he was able to rest a bit.  His vitals were good and nothing appeared out of the ordinary.  But once that medicine wore off he went back to being hysterical.  After going over some options we decided to just take him home.  He still had a fever but it was fairly low.  Once we got home he finally calmed down and went right to bed.  He didn’t sleep well that night though and I kept giving him ibuprofen and Tylenol to get rid of that fever.  He stayed home from school for the next two days to fight the fever and rest.  He’s back to his regular schedule and to being a happy 5 year old.  He rode horses yesterday and did fine.  The neurologist upped his medication again so we will see how that goes. 

Yesterday I dug out all my epilepsy books and started researching these new types of seizures he is having, tonic-clonic.  Here I go again.  I always try to remind myself that I am a much better mom when I am not sad and feeling sorry for my baby.  I do much better when I am vigilant and a bit pissed off.  My mind is clearer and I can focus well that way.  It’s time to go to the angry mom phase and get some work done.  Which reminds me of a lively little quote by J. Rumi: 

You must become ignorant of all you've been taught

And be, instead, bewildered!

Run from what's comfortable and profitable.

Run, run, run!

If you drink those sweet liquers you'll spill

The springwater of your real life.

Forget safety

Live where you fear to live.

Be notorious

Destroy your reputation.

You have tried prudent planning for long enough.

From now on, live mad.