Sunday, February 03, 2008

The Williams Law of Physics

Reality slaps us down pretty hard sometimes, I think, but it's all for a good reason. Ah, the cold and flu season! It makes us grumpy and turns us into gravel voices on the phone. But when you have a medically fragile child, it takes on this new kind of intensity.

Okay, so it's not new. It's the same kind of intensity that we've experienced for the last four years. Is it possible for intensity to be grinding? Because if there is such a thing as a grinding, wearing intensity, this is it.

Niko has been sick since Wednesday, the first to go down. He had a fever and a slight cough, and was cuddled, bathed, sponged down, sung to, napped with, and taken care of with SO MUCH CARE. All while caring for Nina, and sanitizing everything so that Sweetness herself wouldn't come down with Mystery Illness, too. On Friday I went down. Hard. Luke took the kids and I didn't spend more than half an hour at a time out of my bed. Saturday, after a victorious 5k race, (take that, illness! Fie!) Luke went down. I managed to wake the dead (myself) and get a handle on the household.

Cut to today, Super Bowl Sunday. Which is important to millions of people, but not to me. Nina's fussy and sleeping a lot. Niko's coughing every five minutes, although with a little more energy. Luke is practically human, and I'm breathing. So what's wrong?

This is what's wrong. We're taking the kids to the doctor in the morning. For those of you who have witnessed this experience firsthand (Dad) you know that his terror and shrieking makes everybody downright stupid. It's really hard to take him. I've convinced myself that he has pnemonia, and the last time that he did, we were incarcerated inside of the hospital for days. I was slowly packing an overnight bag for Niko and myself, just in case, and the feelings that rushed over me were absolutely overwhelming. What if he is in the hospital? He's bigger now, and I'm sick myself. What if we're there for days? What about Nina? But mostly it was not again not again not again.

An object in motion tends to stay in motion. An object at rest tends to stay at rest. We had been allowed to stop the crazy carousel ride for a while and just rest. No hospitals. No meds. Just rest.

It hurts to give this up. It's like taking a breath and saying, "I somehow thought all of this was over," and then realizing that it won't ever be over, not really. There will always be colds. There will always be hospitals. And of course, there will always be Williams. That's just the reality of it, and like I said, sometimes reality feels that it needs to slap us down. I think that I choose to be grateful for that, because when you rest for too long, like we did, you forget how it was before. I was taking Niko's general good health for granted, and I don't ever want to do that. I want to always treasure his wellness.


Katie said...

Hi :)
Im Katie - my son Jaiden doesnt have WS but has many similarities and i am in a blogging group with some WS moms :)(thats where i found your blog - hope u dont mind!)
I am giggling right now as i saw a photo of Niko and thought he looked similar to my Jaiden and then i saw the photo of your piano and realised it was like mine (except for the colour) and then a pic of you and even you kinda look like me! (including the hair colour, but i am changing mine to bimbo blonde tomorrow!)
It was nice visiting your blog :)

Every minute counts.... said...

My name is Noel and I also followed the link from Camille's site to get to yours. My daughter with WS is 5 and her name is Abi. Stop by and visit anytime!!


camille said...

Hi there Mercedes! I'm glad you came over. I can't wait to see the pics of Niko. I know, I too am always amazed how much our kids look like brothers and sisters. Crazy!

I'm hoping this week brings some relief for you all. Being sick is no fun, especially when it spreads through the whole family.

I hope Niko doesn't have pneumonia. Please let us know how the doctor's visit went. We'll be thinking of you.

Tanja Holtzhausen said...

Hi I'm Tanja, live in South Africa. Henri, my 3 year old son has WS. I rushed him to the doctor today, he had a very high fever and well, it's pneumonia. I hope it doesn't get worse, hospital is the last place I want to go with him. Don't know if it's the same in USA, but here very few people have ever heard of WS, and tend to think your WS child is unruly and simply screams because he feels like it. Anyway, it seems as if I did the right thing taking him to the doctor, sometimes his fever goes up for no reason and stays up for a day or so, but the next day he's fine. This time it was very high, and fever remedies didn't work.
Nobody with normal kids (I have a normal boy too)understands the intense feelings that you experience when your WS child gets sick or hurts, Henri doesn't talk yet, so he simply can't tell me anything. Feeling like I do now, I wish I could banish all bacteria and viruses to hell!! But well, this is the real world and the latter two microscopic critters will remain with us, probably even after possible nuclear holocaust. So, we just have to deal with their unwelcome consequences to the best of our abilities and know that there are other parents who go through these things too, and even if its not a pleasent one, there is a lesson to be learnt out of every episode of illness or hurt you and your WS child suffers through. I believe that Henri was sent to me to teach me a lot about life, and in three years (somehow feels much much longer!!) he has taught me more than in the entire life I had before he was born. It makes me wonder what lesson I'll be learning next.

Laura said...

Hi my name is Laura, I found the link to your blog on Camille's. I have an 8 yr old daughter with Williams. Fell free to stop by my blog.