Wednesday, October 2, 2013

Mama Bear

One of the nicest things anyone ever said to me was that I am a Mama Bear.  It was from a good friend who is very supportive and always knows the perfect thing to say.  But she doesn't blubber on, so when she speaks you know she really means it.

I took that compliment to heart and stashed it away, reminding myself that I am a Mama Bear on occasion.  Yesterday was an occasion.

If you know me at all, you know we have been really struggling with Bailey's decreased lung function. It's quite serious actually, and our whole lives have basically been consumed with increasing her FEV1 level.  She has cultured a nasty bacteria in her lungs that she can't spread to non-CF people, but it hangs out there and flares up causing lung infections.  Her doctor at CHOP is concerned this is what is happening given her decreasing level.  But we're not sure.  She is on a really amped up treatment plan and we are praying on Friday when she gets tested that her FEV1 has come up, indicating better lung health which will keep us out of the hospital.  If it has stayed or dipped down more, we are checking in to CHOP on October 8 for a serious course of IV's, which I am dreading for many, many reasons.  That being said, we are trying to keep her as healthy as possible.

But she goes to public school.  Seems a bit of an oxymoron there, what with so many germy kids all around.  Thankfully, it is on the smaller size with class sizes less than 20 (I think the most she's had so far is 18 for half of a year).  I spoke to the principal, the nurse, the guidance counselor, Bailey's teacher and Taylor's teacher about Bailey's increased medical needs given CF is progressive and it has reared it's ugly head.  I asked that Bailey and Taylor be moved to another desk if there is a sick child near them, I asked that they have their water bottles on their desk so no water fountain, hand washing, etc.  Bailey is also allowed to go to the nurse and have a Gatorade that I supply in the nurse's fridge and she can take her water or drink outside with her, as playing outside makes her really thirsty and she loses so much salt through her sweat.  I ask this every year but this year I asked with THAT LOOK upon my face.  You know, like I'm not asking nicely, I'm telling you this is what I want to happen.  Everyone was so nice about everything and from what Bailey has told me, all of her needs have been met each day.

For the last couple weeks I've been picking Bailey up during lunch to get a breathing treatment in (vest/nebulizer/pills...this girl is a rock star, she hates leaving her friends but skips to my van most days...we'll be able to knock the treatments back from 4 to 3 or 2 if her number goes up).  Yesterday, I dropped her off in time that she still had some recess left.  It was hot, so I gave her an icy Gatorade to keep with her on the playground.  I watched from the van as she checked in at the front door, then ran to greet one of her friends who had seen her and was waiting for her.  I see a lunch aide (Bailey is basically fearful of the lunch aides and now I know why) yell at her to leave her bottle in the cafeteria.  Bailey is running off so doesn't hear but the aide yells louder, "YOU CAN'T BRING THAT OUTSIDE BRING THAT BACK HERE NOW!" so Bailey stops and freezes...I jump out of my car and am running towards the cafeteria yelling OH YES SHE CAN HAVE THAT WITH HER and I say to Bailey go play sweetheart and I stand face to face with the aide.  I ask her if she remembers that Bailey has CF and the nurse had a meeting with the lunch aides letting them know that Bailey is allowed to always have a drink with her and if it's hot it can be Gatorade.  She said ok, well the kids can't bring drinks outside because of the ants.  I tell her I understand, but Bailey will be responsible with her drink and she has been given permission because of her medical need.  My blood was boiling. She said ok, that she must not have been there for when the nurse talked to the staff.  The nurse has told me she has talked with them a few times, but I think I will need to make more of an issue of what Bailey needs, in all areas.

Playing the scene back in my head, me running (yeah, I was that upset) towards the lunch aide and ready to throw down over my kid getting to have a drink with her, I feel I was a bit undone.  If it's true she wasn't there for the talks the nurse has had presumably, then she was within her job and I totally get it.  I don't know why I reacted like that instead of being calmer.  I guess I was furious as I assumed she was there, and did know, and forgot because it just didn't matter enough to her.

I'm not proud of myself for my reaction to the lunch aide.  But I am proud that I know I will go to the ends of the earth to fight for whatever my children need.

I'm a Mama Bear.  And at times when I feel really ugh about everything, I'm going to remember that.

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