Mystery Lane

Mystery Lane

Wednesday, October 16, 2013

Those Kids of Mine

I remember watching some reality TV show a few years ago where the family had like 7 kids.  At the time I thought that it looked like so much fun to have a big family like that.  All those different personalities and chaos and laughter.  Now I think about that and my response is “Oh hell no!”  I am barely keeping my head above water with the three we have and before that I could barely manage the one we had.  But one thing we do have is chaos and lovely laughter.  Oh the laughter.

One day shortly after school started this year I dropped the kids off and as they ran to the school I just honked once and waved.  Daniel waved back smiling.  Sylvia gave me a goofy look.  I didn’t think much about it and did the same thing the next day.  By the third day Daniel said “Honk at us!” as he got out of the car.  Sylvia said “No don’t!”  Then she took off running for the playground.  Which was weird.  Sylvia hates running.  Last year she walked in the timed run she was supposed to do for P.E.  So I quickly realized she hated the honking.  Which made me laugh.  So I didn’t honk.  But the next day she was going on and on about the honking and how she hated it and I just couldn’t resist.  So I honked again.  (Disclaimer: I am incredibly ornery.  My maiden name is Rutledge which I am pretty sure means “ornery one” in some foreign language.)  The next day I told her I wouldn’t honk.  And I didn’t.  Instead I rolled my window down and at the top of my voice yelled “Bye Sylvia!  Have a great day at school!”  She stopped, turned and looked at me with a horrified look on her face and yelled “NOOOOOO!!!”  As I drove away I had tears in my eyes, from laughing so hard.  The next day as I dropped them off I asked “Honk or yell?”  Sylvia, totally defeated, said in her most annoyed voice “honk”.  Ah the joy of raising children.  So much laughter, on my part anyway.  I have decided to only torture Sylvia a couple of days a week now by honking.  Which she is grateful for.  Daniel, on the other hand, loves the honking.  He’ll stand there with a giant smile on his face waving as I drive by.  I just can’t resist that smile.

A few weekends ago it was a rainy Fall day here in Spokane so I decided to surprise the kids and take them to a local McDonald’s that had just renovated their indoor playground.  I figured they could burn off some energy and I wouldn’t have to make lunch, a win-win for everyone.  Once we get there I decide to splurge and let them get Happy Meals.  We don’t go to McDonald’s very often and when we do we rarely get the Happy Meals.  So they were pretty excited all around.  I took the kids into the playground area and got them set up at a table.  Then I headed back to wait for the food.  There is a glass wall between us so I could see them.  As I was standing there waiting for the food I looked over to check on them.  I could hardly believe what I was seeing.  Daniel and Sylvia were hugging each other with big smiles on their faces!  Now this might not seem relevant to you but in the 6 months we have had them, they have never hugged, NEVER.  They hug us, but not each other.  Once they got in a fight and I told them to apologize and give each other a hug.  They refused!  They patted each other on the arm and walked away.  So to see them hugging was like Congress agreeing on something.  I started laughing because I just couldn’t believe my eyes.  When I got back to the table with the food I asked “Why were you guys hugging?”  They looked at each other and Sylvia said “Because we are so happy!”  Lunch at McDonald’s - $20.  Seeing that hug – Priceless.

For the last few weeks Jackson has been desperately trying to move.  His current mode of transportation is just to roll everywhere.  But lately he has been getting into the crawling position.  He has been standing up on his knees, then when he starts to fall he falls forward onto his hands.  This is fairly amazing in itself because for so many years he never used that left arm/hand.  Since the damage to Jackson’s brain is on the right side his left side has always been weaker and non-functioning.  So to see him responsively put his arm out and bear weight on his hand is an amazing sight.  The other day we were on the floor and Jackson got in the crawling position.  I got in front of him a few feet and said “Come see Mommy.”  Before I knew it he scooted his right leg forward, moved his hands forward and had moved a foot or so!  I started crying.  I kept coaching him on to get closer and boy did he try.  He was huffing and puffing like he just ran a mile.  He was trying so hard but he just couldn’t figure out how to move that left leg.  He finally collapsed to the floor, exhausted.  It was amazing!  So amazing!  As I write this I am crying just thinking about it.  I try not to think about Jackson doing certain things because then if he isn’t able to do something then I won’t be crushed.  When he does do something then it is a miraculous, joyous occasion.  I never thought Jackson would crawl.  Once again I think that kid is going to prove me wrong.  Ever since having Jackson, I really love being wrong.

I leave with this quote, it seems fitting to my children right now.  “All children, whatever the impairment, are propelled by the need to make themselves whole.  They may not get there, and they may need massive guidance, but they must forever try.”  - Oliver Sacks


Thursday, October 10, 2013


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.