Wednesday, July 19, 2006

Hell Hath No Fury...

Like a mother scorned. And I was scorned today.

It’s one thing to just scorn me. But to scorn me regarding my children, in this case Soren, will not be tolerated.

Soren and I were dropping Moira off at camp this morning. This summer she is attending Camp with swimming every day at an aquatic center. My goal for her this summer is to have her water safe. It was my first time dropping her off. Aaron has been dropping her off since she started. But he had to get into work early. So it was a big deal to Moira that mommy was dropping her off instead of daddy.

I have a handicap placard because of Soren. It comes in handy when the parking is really narrow and I need to get him into his stroller, which is large and heavy. We are actually working on having our minivan reoutfitted removing the captain’s chair that came with the van leaving a space for his stroller (and eventually his wheelchair). Also we will have a ramp to just wheel him in and out.

So I parked in the handicap parking. I hefted Soren’s stroller out, loaded him up, and the three of us headed in to camp. That’s when this older man in swim trunks with a towel around his neck, asked me if I could answer something for him. “Sure!” I said, wide-eyed and happy to oblige.

“What makes it so that YOU can park in a handicap spot?” he asked in a bitter, accusatory tone.

A little taken aback I answered, “Because I have a disabled child.”

He looked at Soren’s stroller scornfully. “In that?” Soren’s stroller is often mistaken for the more expensive strollers on the market these days. And it is expensive. It was $1,700. Even a Bugaboo doesn’t cost that much.

My heart was pounding now. I couldn’t believe this man was confronting me at 8 am in front of my kids when I was taking my daughter to camp. But I hate for anyone to accuse me falsely. Especially in this situation. “Yes, in this,” I responded. “He has a severe form of epilepsy, is 2 ½ years old, and can’t walk,” I said.

“Sounds fishy to me,” he said as he turned his back and walked away. A total coward, picking a fight and then running away.

“And you’re a jerk!” I shouted. I will admit, it was a weak comeback. I wanted to call him an asshole, but Moira and other children were around. “You have no idea what my life is like!” I continued. But he was on way to swim.

So now I was flustered, tears in my eyes, and I still had to get Moira into camp. I dropped her off, still livid. Thinking of the million other things I could have or should have said. And as Soren and I left, we crossed paths with him again. And, being me, I refused to let this go. Though I was still polite (or wimpy).

“May I please tell you my son’s situation before you walk off?” I asked, desperately wanting to inform him that I’m not trying to cheat the system with my handicap placard. I mean, I'm not trying to pull a Paris Hilton.

“My son wears leg braces,” which Soren was wearing. “He cannot walk, talk, crawl, or feed himself and he may never will. This stroller is actually a wheelchair. And I’m sorry if you’re offended that I have a handicap placard, but I am 5 feet tall, this is a heavy chair, and he is a heavy boy.” Which is all the truth and on the up and up. I’ve ended up having to see the chiropractor because I keep tweaking my back carrying Soren around. Currently the placard is for Soren. But if I’m not careful, it will be for me.

He was still a little gruff with me, but began to back down. He explained that he has trouble with his legs; he’s in a lot of pain. His legs did look scarred up and rather spindly for such a tall, stocky man. I could see from his face that he was in pain.

I told him I appreciated that he was going to have to live with his pain for the rest of his life. But I was going to have to live with Soren’s situation for the rest of mine. And that meant that after I died, for all I knew, Soren would have to be in a home. Soren’s disability permitted him to the placard. And, thus, I got the placard.

By now I was in tears and he REALLY wanted to get away from me. He tried to apologize by brushing me off, but I wouldn’t let him off the hook. I told him that his accusations really upset me. Especially considering Soren’s situation, which he had NO idea about. I was freaking him out all the more. He made his final stab to get out. “Oh, he’ll be fine because he has you for a mother,” he said in attempt to make it all right. But he was really just trying to escape again. F’in’ coward.

My real point here is that he should have known better than to mess with a parent in regards to their child, disabled or not. I’ve found that people will take all sorts of shit when it’s just about them. Their boss can treat them like crap, their friends can backstab them, their family can be lame. People will tolerate all that.

But don’t go talking trash about someone’s kids. It's best to step back. Especially when stirring up the wrath of mom.

Monday, July 17, 2006

Much Better

After sleeping most of Saturday, Soren started coming round to his normal self on Sunday. He woke up cooing and kicking. Hungry. Eating great. Just the way we like him. It's interesting, while Soren doesn't do half the stuff a typical 2 year, 9 month old would do, we sure missed all the things he normally does while he was sick. He has a lot to say in his own way, he loves to wiggle, and eating is his true passion. All that was gone during the 4 day fever. I really missed the sound of his voice, even if he doesn't say any words. So I'm happy that my humming boy is back. I'm glad to see his legs a kicking. And he's turning to his side again, now that he has the energy.

Oh, an amazing thing happened when Soren was REALLY sick. I had put Soren on his side. He had rolled himself to his belly, trapping his arm beneath him as usual. He sneezed all this guck out of his nose. I went to wipe his nose. Now, I would have expected 1 of 2 reactions from Soren at this point. 1) He would be feeling SO crappy he'd let me just wipe his nose. or 2) Like any other kid, he'd try to avoid his nose being wiped. To avoid me, I would expect that he would push himself to his back, moving away from me. I know he can do this, so this would be a logical reaction.

Instead, Soren, who was still on his belly, lifted his head, and turned it away from me the opposite direction. I hope I'm making this clear. In all his therapies, when Soren is on his belly, he REFUSES to lift his head to look at a toy or any other stimulus. But when it came down to having his nose wiped, he mustered up the energy and the will to lift that head, turn it, and avoid me. It was very impressive and I wish you were all there to see it so you'd know what the heck I'm talking about.

Anyhow, today Soren and I are skipping school at UCLA so he can be at the top of his game for Intensive Therapy this afternoon. I hope to have pictures after today's session and I'll describe the whole thing.


Friday, July 14, 2006

Sick Soren

Soren has continued to be sick the rest of the week. His fever continued, not getting under 100 since Monday night. We did drugs, cool baths, more drugs. Finally I took him to his pediatrician. Soren is prone to ear infections, so I wanted to get his ears checked. And then I began to fear he'd aspirated some liquid and gotten an infection.

His ears are bascially fine (we went on antibiotics to be on the safe side) and his lungs were good as well. I was relieved. I feared we were going to have to check into the hospital.

Instead it turns out Soren got the 4 Day Fever that's been going around. And there's not much to do about it other than wait it out. So, since it started Monday night, it's supposed to be done by tonight. His temperature is actually normal today, so maybe he started the fever sooner than I noticed.

One good thing is that I didn't see any seizures since the one on Tuesday. And considering how sick and miserable he was, that's quite amazing. Now the trick is getting fluids in him. His throat is really raw. He even coughed up some blood early this morning. But he's liking Jello and had a banana for breakfast.

Anyhow, send good thoughts this little guy's way. He needs 'em.


Wednesday, July 12, 2006

For Pete's Sake!

I didn't write about this earlier because I was waiting to see what happened. On Saturday, after the fundraiser, Soren had another tonic seizure. Ugh! I called the neurologist on call to see if we should increase the medicine. He asked if there might have been something to have triggered the seizure.

Now typically, Soren does not have a "trigger" like strobe lights, swinging, or heat. He has a friend whose seizures used to be triggered by heat. This little boy would come to therapy only in his diaper because even wearing clothes would overheat him and trigger a seizure. But Soren's seizures always just sort of happened out of the blue, regardless of where we were or what we were doing.

BUT, when you have seizure control, seizures can be brought on by extreme situations, like heat or illness--something that can compromise a child's system causing the seizure resurface because the body is busy dealing with the other crap that's going on. Make sense? It upsets the old apple cart.

That day at Soren's fundraiser, it was REALLY FREAKIN' HOT! And since Soren doesn't drink water like a typical kid, he doesn't really have a way to cool himself down. So I told the doctor this and he said that due to that extreme situation, we should pause on increasing the medicine until we see more seizures. I was fine with this. Soren didn't seize Sunday or Monday, so we wrote this off as an educational experience to keep him out of excessive heat.

Then Soren spiked a fever Monday night. Otherwise he was his normal sweet self--no running nose, cough, vomiting. He was just hot. So we gave him Motrin and put him to bed. The next morning he was REALLY hot. I took his ear temperature (which is notoriously inaccurate) and he was at 103 in one ear and 104 in the other. I didn't do a rectal temp, which is much more accurate. I felt that was a little invasive for 6 am. I got more Motrin in him and put him in a cool bath. I cancelled his morning therapies.

BUT just this week, we started an intensive therapy program (which I'll describe in detail in another post). It's 3 hours a day, 5 days a week, for 3 weeks. We've been planning to do it for about a year now. It's in Brentwood from 1-4 pm, so I had to make sure Moira went to a camp with an aftercare program so I could haul my butt from Brentwood to Pasadena by 6 pm when camp closes. I had to cancel all Soren's afternoon therapies for 3 weeks. It's taken a lot of preparation and juggling.

So, even though Soren was feverish, I took him to his 2nd session yesterday. Besides being hot, he was still acting normal. Smiling, charming, cooing. They took it easy on him and he did great work, lasting the full 3 hours.

Then as we were driving home, Soren had another seizure. I hate when this happens because I'm driving and there is nothing I can do. I didn't even know it was happening until I heard Soren make a scary sound. I turned to look at him, and he was frozen, lips blue, barely breathing. I caught it on the tail end, because he took a gasp of air and came out of it.

When we got home, it all fell apart. Soren was hot. I drugged him some more. I gave him a cold bath. He was furious. I called my sister (the pediatrician) for advice. She said I was doing the right things. She also pointed out that the seizure Saturday could have been from him getting this virus. Certainly the one while driving was from that. I tried to feed Soren, but he only ate a little of his guacamole. Enough to get his Lamictal in. By now his nose was red, his eyes were puffy, and he looked like hell. I got him to drink most of his bottle and laid him down on the floor to rest while we ate.

Well, he threw up his guacamole, though he waited long enough that he kept his fluids in. Thankfully he's laying on his side most of the time now, so it all came out quite nicely. We put the poor boy to bed, knowing the best thing for him was sleep.

So here we are this morning. Soren still looks like crap. His nose is running like crazy, his eyes are still quite puffy, and he's still quite hot. I haven't seen a seizure yet.

Needless to say, I had to cancel all his therapies, including the intensive session that we've been waiting SO long to do. That's just the way things go, isn't it? For all his troubles with seizures, Soren is actually a rather healthy kid. He doesn't get colds very often, he's never had the stomach flu. But just when we schedule this thing we've been planning forever, looking for the "perfect" time, he's sicker than I've ever seen him (with a normal kid thing, that is).

Ah well. He'll get better. And we'll get the intensive therapy in when he is. Just another unexpected bump.


Saturday, July 08, 2006

Fundraising Success at Oxy Children's Theater!

Our event today for Soren's Stem Cell Fund was a great success! In ticket sales, we raised $1,800!

Then, thanks to Sheri Alford's mom Lynne donating her delicious cookies, we raised an additional $87.00 (thanks to people giving donations along with their payment and Andy buying lots of cookies)! A special thanks goes to Sheri and her husband Ahmet for driving all the way from Temecula to pick up the cookies this morning and sell them!

That brought the grand total to $1,887! Not too shabby for a morning of children's theater!

And it is GREAT children's theater. The kids were laughing. The adults were laughing. And the actors were sweating. It was HOT today in Eagle Rock and my hat's off to those actors. They put their hearts, souls, and sweat into that show--tumbling, climbing, diving. They were absolutely great. And thanks to Jamie Angell, the brains behind Occidental Children's Theater, for letting us pre-sell tickets for Soren. We really appreciate it!

If you weren't able to make it or want to see it again, go to their website for information at
  • Occidental Children's Theater

  • Thank you everyone for getting up early and joining us this morning. It was lovely to see all the support we have for our sweet Soren. We are very lucky to have you all in our lives!


    Sunday, July 02, 2006

    Soren's Fundraiser at Occidental Children's Theater

    I know I've emailed all of you about this. Many have bought tickets (Thanks!). And many have made donations because they can't attend the performance (Thanks!). But here's yet another reminder for Soren's Stem Cell Fundraiser at Occidental Children's Theater's production of "Dracula and the Beanstalk."

    The performance is this coming Saturday, July 8th at 10 am in Occidental College's Hillside Amphitheater. Tickets are $20 for adults and $10 for kids. All PRESALE tickets go to Soren's Stem Cell Fund. This means, only the tickets purchased PRIOR to the event go to Soren's Fund. If you come the day of the performance and buy tickets, the money goes to Occidental Children's Theater, which is also a VERY worthy cause since they do GREAT children's theater.

    To get tickets, click on the BLUE button to your right. Your ticket price is TAX-DEDUCTIBLE!!! Wahoo!

    And in case your wondering what Occidental Children's Theater does and what the heck "Dracula and the Beanstalk" is, this is a group of 6 actors that perform 3 fairy tale/folk tales from around the world and 1 original piece from Eagle Rock, Ca (this year, it's "Dracula and the Beanstalk.") Their only props are a quarter staff and a sash. And the performance is filled with tumbling, physicality, and audience participation. They are quite awesome and always get terrific reviews.

    So, come if you can. We would love to see you there!