Tuesday, April 15, 2014

G-Tube Discrimination

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There are very few things that get me all worked up. Very few. And that's something I take great pride in (especially as a member of the special needs community - which seems to have a tendency to take offense and/or feel victimized) But sometimes it happens. Yesterday was one of those days.

Here's the story:

I've been trying to get more fluids in Elisabeth. This can be tricky because she can only tolerate around 6 oz every two or three hours. I usually give her two servings before the school bus comes, but she doesn't get any more until around four in the afternoon after I have picked her and the other children up from school. Long story short, I had a brilliant idea to send a measuring cup and a feeding tube with her to school and have her nurse give her some water part way through the day.

Fail.

When I picked Elisabeth up from school her teacher handed me a form and told me I needed to get doctors orders to give Elisabeth water.

What??????????

Doctors orders to give her water?????

Since when does a child need a doctors note to have water? Oh wait...they don't. Every other child at that school can have water any time they want. As much as they want or as little as they want. But my girl needs permission from her doctor. G-tube discrimination if I ever saw it.

Okay...now lets skip past the first ridiculous fact - which is that Elisabeth needs permission at all to have water - to the even more irritating fact: I, being a mother, don't have the authority to request water for my own child.

Let me say that one more time - I, Lisa Sorenson, mother of Elisabeth Sorenson, do not have the authority to order water for my child.

Since when does Elisabeth's doctor have more control over her life that I do? That's right, she doesn't. Because I am her mother. I know what's best for her. I am the one looking out for her. I am the one changing her diapers and making her food. I am the one that sings to her and cuddles her and takes her on bike rides along the river. I am her mother. I know what's right. And what's right is for her to have a drink of water in the middle of the day.

(Can you tell I am a little worked up over this?)

Honestly, this is as ridiculous as the time the school informed me that in the case of an emergency they would wait for an ambulance to arrive and transport Elisabeth to the ER which is directly - and I mean DIRECTLY - across the street from the school. I said, "You couldn't just carry her across?" Nope.

What has happened to common sense? If there is an emergency, pick up my child and RUN her across the street as fast as your legs will carry you. And if she needs water, by golly, give the poor child some water. I am so tired of all these silly little rules.

In all honesty, I think I might pull Elisabeth out of school. She doesn't go there to learn, she goes there to have a change of scenery and to give me a little break. But I'm not sure it's worth it. I am her mother and no one can care for her like I can. I can sense her every need, I can understand her every want. She belongs with me, under my care.

In the mean time, I refuse - I ABSOLUTELY REFUSE -  to get a doctors order for the water. I intend to show up at the school every day from here on out and give her water myself. 

Because I'm stubborn like that.

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