Friday, June 3, 2011

sticky gooey red cheeked mess

So amazingly enough I had one of those very precious yet messy moments tonight. 10pm in the emergency room - croup again. Fuckin' croup. It's the nemesis of every child with Down Syndrome (or a low immunity for any reason) and it has been something that just comes and comes and comes and . . . well we've seen a lot of croup here in my day!!

So usually Seth responds well to a typical nebulizer treatment at home but not tonight. No tonight he had to resist it and keep on being croupy. What does being croupy sound like you ask? It sounds something between a barking seal and an annoying teenage girl making yippee dog sounds. It's most definitely noticeable and not pleasant.

Seth is in bed currently, we just got home 5 minutes ago and of course I had to check Facebook and see what is going on with this blog. The urge to write is just too great. So here I am, post hospital trip. It is one of many but they are not without their precious moments, the little gems that make this journey with Seth worthwhile.

I meet the most awesome people in the ER. I mean moms who have kids with special needs, mom who think it's cool that I'm signing with Seth and moms and dads who just think Seth is adorable and treats him like any other child. It doesn't hurt that I know most of the staff there and have made some really good friends. I like people, I like their stories. I like to know what keeps them in an ER at 2am on a Friday night. For me it's normalcy - for them, well I know most of them are scared shit. And what parent wouldn't be??? Well here comes the messy stuff - I've been there so many times in so many ways that the ER isn't scary, it isn't intimidating, it's just kind of . . . boring. Yep it's boring. Bringing along the Ipad and a good book helps. (Shameless plug for the Ipad - nope I'm not being paid by them!) Moms - you must have an Ipad for doctors appointments - it's a life saver.

So I look at all these people, all of the people who only go to the ER maybe once every few months and yes, I'm a bit jealous. I'm jealous that a stomach virus or a few stitches is all they have to go through for a while. I'm jealous of their ignorance, of their innocence. I'm jealous that instead of being overly concerned with my child's well-being I'm constructing a to do list in my head. That is what Seth being sick is like for me - it's a glitch in my plans. For other people it's a big thing, for me it's another time he is sick and more time I have to deal with him being sick than other things that need tending to. I'm sad because I feel like I'm insensitive to Seth's needs all this time. Croup the 20th time is very different from the first time. I'm jealous that Seth knows the staff at the hospital so well - it's a double edged sword. On one hand this IS Seth's life - he will get sick more often than other children. If I let him think that this is bad or not normal then he will mourn for a life that isn't his. If I let him think it is normal then I'm just lying to him. Perhaps there is a middle ground . . . some way to tell Seth that this is normal . . for him.

Because my eyes are shutting . . . I will say goodnight. I hear my seal coughing away in the next room :(

1 comment:

  1. Good to "connect" with you guys, and hear about Seth. I look forward to learning more about his story!

    It's pretty amazing to think that God hand-made little Seth just for you. There is no mommy on this planet that has the ability to raise him up then you! You're hand picked to be Seth's mom! What a fun, honor!

    My wife is a ER Pediatrician, so our family as a special place for the ER.

    By the way, the "Seth" is also special to us. When you get a chance take a look at this post, and at the bottom click on the link about our friend Seth's Miracle Ear! ----->