Sunday, November 23, 2008


Locations of visitors to this pageSo we learned a few things today, or rather confirmed them.

We really can't do anything else while Simon is getting his morning meds other than sit quietly and read books. This takes about a hour. Yesterday we tried it while we were out on a walk (I was pushing meds into his NG on the sidewalk, to slightly horrified stares) and he puked his little guts out about 10 minutes later.

Two outings is too much for the little man. One is probably just fine. We went on a big dog walk at Pt. Isabel this morning with Shimmy in the stroller. I thought he'd sleep but he wanted, of course, to see everything. He had about an hour nap in the car seat once we got home.Then we decided to go to 4th street at about 2 pm to pick up some organizing crate thingys and walked aroud a little. He took another nap, about an hour and then woke up really cranky and pukey and went back down, after a fight at about 5:30ish. We both were a little freaked that he was so cranky and pukey.

This is what makes this harder than normal parenting. Normal parents take a zillion years to get out of the house. They have a trillion things they have to take with them. We just have more that the average parent. Still feels within the realm of normal.

But unless you're SUPER neurotic and hopefully getting help for it, most parents don't fear that every time their kid is cranky or won't go to sleep or pukey or sweaty that the kid is about to end up in the ICU and maybe die within a few days.

We do.

I know (or maybe just really hope) that the longer time goes on, the less intense this will be, but right now it's like there's a big awful thing just under the surface and if you scratch at all, something sinister oozes out and forms grey, icy little crystals.

I consider myself an optimist. I don't really walk through life waiting for bad things to happen. If I'm spinning about something bad I'm afraid of happening, I can usually use my powers of rational thought and catch myself.

But this is different. I've already seen the monster. I know it's there and alive and well. I don't want to think that it's got nothing better to do than to just wait to gobble Shimmy up but I'm not sure he's like Santa and has lots of other kids to worry about.

Hey, it's like the Grinch that Stole Parenting!

God I'm glad I can laugh about this.


Elizabeth Stark said...

That sounds incredibly hard. It also sounds like you guys are so aware and on it, doing a terrific job at something that is--normally--unbelievably hard and here you have a whole huge extra burden of fear added. November is a little crazy for me, but I would love to know how we can help--and I am sure other people would, too. I know when Simon first went into the hospital, someone was organizing help. Maybe this would be agood time to have someone do another round of organizing? Sending much love.

Elisa said...

We would like to volunteer to help too! Put me on what ever duty you need...laundry, housework, food prep. I'd be glad to do what I can.

xo ~ Elisa and Isaac

Manolito said...

hi there beautiful people. Its been a while and i just read all the past postings. we are so happy that simon is home and also sending our love and deep breaths for this next stretch. we are in Bogota until the end of december but cant wait to come and visit and help out and share the victories with you all. anything you need from colombia? well, sending huge hugs and kisses. -alli, eric and dragoncito

Jen said...

Hey sisters
I just sent you a link to what might be a good parents support group. If anyone out there knows of anything like that it would be great. Now that you're out of the hospital it might be nice to keep having parents to talk to who can "get it".
And we three send you big fat hugs and kisses