Wednesday, August 10, 2005

Junior High Fears

Over the weekend we had a good old fashioned house moving. We moved Janie's playhouse from right outside the kitchen windown to the far end of the backyard, tucked under the lemon tree. This playhouse is huge and very heavy, so we've been debating how to move it for months now. Finally he took my advice, plus added his own spin. He tied ropes around the house which he hooked up to wenches tied to trees in the backyard. He then rolled the house on loose logs. He'd pull the rope through the wench, the house would roll, and I'd grab the logs as they rolled out the back and put them in the front. Janie sat on her chair on the porch of the playhouse, directing and riding. Jack sat in his swing in the shade with a fan pointed at him, missing only the fruity blended drink with umbrella.

On Sunday I planted two bougainvillea bushes in the backyard. I love these bushes as they are nearly indestructible and have such bright flowers. Their thorns really cut me up as I hooked them up to trellises, but I was very happy I got to play in the backyard. I wanted to get out there before school starts again and I'm too busy.

I'm looking forward to school starting again. This year it means going to start working part time instead of full time. Yay! It can't happen soon enough. It's not like school is easy, but it gives me a chance to get out and be around grown ups. I love my children, but breaks make me far more appreciative.

Today I've got to order more bags for Jack. We tried out one of the many varieties the ostomy nurse had given me and like the one with the spout. I didn't try the flange ones. They are adult or bigger kid size so just look too huge, plus they just look too foreign. I guess no ostomy bags will look natural, but these are just too different than what we're using and my tolerance level for these types of things is very low.

Sometimes my mind goes off, kind of James Joyce-ish, flowing all over the place. I have a few of his first ostomy bags saved and his doll with the stoma (part of the intestine that sticks out). These I will show him when he gets older. He's going to ask about those scars. I suppose its sort of like the sex talk in that you only explain things as far as they are able to understand them and want to know about them. By then I hope to have the wisdom to explain it to make it all sound very normal and fine. Just fine. No problem. Sure. Then I thought of him taking gym class in junior high school. Undressing, the other boys will ask about the scars. As long as Jack is fine with it, I'm sure he can convey that it's no big deal. Battle scars, very cool. But what if his gym teacher is an @sshole? That although I have given explicit instructions that my son must remain hydrated, that the mean guy with the whistle decides to exert his power and deny my son water. Toughen him up. No special treatment. Then what? I have to worry about my son falling over dehydrated? I have to run down there and give the guy hell? Or do I have to send my husband to talk to him man-to-man? How 50's is that? And I don't want my son to stick out or be different. He can do everything the same and any big deal we make over it will defeat that no-big-deal feeling we're trying to give him. Besides, how important will water be? I don't know. I don't have a clue. And I can't find anything to tell me. Will the Hirschprungs affect his life after this next operation? Will he have any heart problems after this year? Can he still be and do anything that he wants as he grows older? Or will this always be around haunting us?

He fell asleep in his swing. If I was a good mother, I'd take him out and put him down in his crib. But, I'm a mother who'd rather him sleep and who knows that taking him out will mean that he most likely will not fall back asleep. So I'll let him sleep where he is.

At night he's been sleeping in his crib and I've been sleeping in my own bed with my husband. Imagine that. He still wakes up every 2 hours to eat. I could work on fixing that by not feeding him every time, but no way. If he needs to eat, at this age and considering his circumstances he will eat. Perhaps that spoiling him just because of his condition, or perhaps it is just making sure he is getting all that he needs. I actually like laying him down in his crib. The nursery is really nice; the best room in the house. The walls are two blue colors, one for the ocean and one for the sky. There are boats, lighthouses, seagulls and sandcastles recurring throughout. And the crib, the one I got from craigslist for a steal, is really beautiful and sturdy. I go in there and I immediately breathe deeper and feel calmer. I lay him down and start up his fishes. He looks like an angel when he sleeps. When he wakes up, he usually starts crying right away. I'll go in and find him all red in the face with tears down his cheeks and puddled in his ears, and a hurt abandoned look. I smile and try to put off the vibe that he's overreacting. Hey, I was only gone a second, really. And you were asleep in this beautiful room. When I pick him up, he'll look around suddenly interested, but we don't stay long. It's off to another room to change him and empty his bag, then feed him. The endless cycle of eating and pooping and sleeping and waking. Sure, it will be nice once he starts talking and crawling, but I like how it is now. A baby. I have a little baby. And I wouldn't trade him for the world.


Anonymous Anonymous said...

As the mother of a middle schooler, who starts football tryouts today in the HOT South Georgia Heat, I can relate to the thoughts about a mean ole coach! I am so worried as I look down at my weather bug and see that it is 90 degrees here now and it is 2:00, tryouts start in an hour, how hot will it be then. Will they give them enough water? Will my son tell them that he is tired and stop?

Then I read your post and remember him as a little baby in the crib, not sleeping, crying and me being able to comfort him with a swing in the backyard.

Enjoy Jack. It goes by in a flash.

11:12 AM  
Blogger Jen said...

I doubt you were looking for real solutions to far off future worries, but just in case... since he has a medical condition, chances are he'll have an IEP or 504 plan (education paperwork for kids with medical or other special needs) MANDATING that he have whatever accomodations he needs, like having a water bottle in class even if other kids can't or being excused to get a drink when he needs it. There are a couple of kids I teach who have bladder issues and it's in their file. You let them go to the bathroom no matter what. So there may be asshole teachers in his future, but unless they're serious idiots, they'll do what he needs or risk losing their jobs. I know that having paperwork may set off the "I don't want him to be different" bells, but at least he'll be safe.

As for the present... the house moving? Hysterical! I bet Janie LOVED it!

And I am soooooo jealous that you have a lemon tree. Do you have avocados too?

3:49 PM  
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4:03 PM  
Anonymous Anonymous said...

Beautiful post.

I don't mean to sound pedantic, but I sure hope you meant winches instead of wenches. I had the most hilarious vision in my head of medieval buxom wenches tied to the trees straining to drag the house!

I'm sure whatever teachers are teaching Jack will have a big enough fear of litigation/losing their jobs to not deny him what he needs. Things are different from when our generation were made to keep going despite illness, broken bones, chronic disease, etc (all which happened at my elementary school - believe me, it wouldn't happen these days).

2:50 AM  
Blogger Anna said...

I thought you were a good mother for just letting Jack sleep in his swing. What's more important? Waking him up so he can sleep "properly" or letting him get the sleep he needs (even if it's in his swing)? Don't be hard on yourself - I think you're a great mom : )

I'm glad to hear he's sleeping in his crib and that you're getting more sleep too. With all you do, you never cease to amaze me! Have a delightful day : )

7:32 AM  
Blogger dsimom said...

My son is 8 and he has a learning disability. It's like he is dyslexic in his hearing. There is not a lot we can do to test him at this age partly because he has figured out how to cope with it. Because we can't get any useful testing done, the school does not recognize him as disabled though each teacher he has had has been able to see that he doesn't hear well.

So this year, I had to begin telling him how he is different and what measures he will need to take to demand that he get the same chance as a kid who can hear well.

Believe me, I know what you mean about that balance between protecting him and not making him feel different. I think what it comes down to is not making him feel broken or defective.

I was able to talk to my son about his differences this year and I am very happy that I have explained it to him. He always knew he was different. Now, he knows that it's just a difference and not a defect.

Hold onto this thought for when you actually have to cross this bridge. My son is a wiz at math. Most kids aren't. This makes him different. It does't make him defective. The muscles in his ears are not well developed. This makes him different. It doesn't have to make him defective. Jack's intestine didn't develop properly. This makes him different, but it doesn't have to make him defective.

You have a few years to work out the right words to tell him and I'm sure you will.

Boy that was long!

9:26 AM  
Anonymous Anonymous said...

***From someone who has had her entire large intestine removed: I do not think you need to worry about the water thing at all.*** When you have something removed down there, even if it is the entire colon, what's left (i.e. the small bowel) "learns" how to absorb water. I was told to just drink as much water as I would have normally.

bec :D

9:26 AM  
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1:11 PM  
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