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Not easy, but worth it

Are we tired of gross pictures of Raya plastered in pureed food yet? :)
I've lost count of how many times in the last 10 days that I've thought to myself how much easier it would be to just forget about feeding her food and let her keep getting all her calories from formula. SOOOOOOOOOOOOOOOOOOOOO much easier. Raya has averaged 2 showers a day since we started pushing the oral feeds. There is oatmeal, mashed pinto beans, and cracker goo EVERYWHERE. We can no longer leave cups of water (or anything else) on the kitchen table, microwave, or first 4 inches of the countertops because Raya can and will get to it. 
"Messy" doesn't even begin to describe it. She has now gotten more creative with her "eating" and has started trying to put the food directly from the spoon into her G tube. She usually fills the balloon port up and I'm afraid it will get clogged. (The alternative is leaving clothes on her while she eats and it's just easier to hose her off than try to wash oatmeal out of her clothes.) Her new thing tonight was spooning her beans into her nose and then sniffing and blowing to make the little lump of beans go in and out of her nose. I then had to carefully remove the beans from her nose later with a Q-tip. She thought it was funny.
She had very little interest in eating her beans tonight so she just dug in with her hands and made a big mess. I didn't bother taking a picture because it pretty much looks just like all the other pictures of Raya covered in food. And the floor covered in food. And the table, high chair, and anything left within a 2 foot radius. It's worse when she doesn't feel like eating because there's more left to play with. It would be SO much easier to just forget about it and go back to putting all her calories through the tube.
(and here's the part where I unload. feel free to skip it. the end will still make sense.) I've been struggling a bit this past week. It's a combination of things. My older 2 kids are back in school now and on Tuesday night, I went to curriculum night where each teacher goes over what they'll be covering this year and how they run their classrooms. I left the school that night feeling overwhelmed and almost in tears. My oldest daughter is in 3rd grade this year, and she had a pretty lousy year in 2nd grade. Raya was in the hospital on meet-the-teacher night last year, then she was in the hospital again for parent-teacher conferences (for half of October) and then I flew to Ohio with her for motility testing the last week of the semester in December. In between all of those, I was struggling to keep my head above water with feeding & medication schedules, lack of sleep, and everything that goes along with trying to keep a household running and I just wasn't there for Ashtyn & Cole when it came to homework and making sure they were doing their reading. I felt terrible about it, but I was just plain maxed out. On top of everything going on at home, Ashtyn's teacher didn't seem to care whether she did her work or not, never bothered to let me know when she didn't get work done, and wasn't bothered by the fact that a child who had been getting 3s and 4s the previous 2 years of school suddenly had 2s and a couple of 1s on her report card. Her classroom was chaotic and her solution was to isolate Ashtyn & give her a desk all by herself off in the corner somewhere. It just wasn't a good year for her.
This year, Ashtyn has the PERFECT teacher for 3rd grade, but I found out at curriculum night that there are too many kids in both of the 3rd grade classes and by law they're required to split the classes. There's no way to know at this point whether she'll get to keep her wonderful teacher or not, and if she did get moved to a new class, it would pretty much be like starting all over again for the school year. Coming off of the 2nd grade experience she had, I don't know how she'd be able to catch up after that. Not to mention that we have no idea who the new teacher would be or what he/she would be like. So that has been on my mind a lot this week and it bothers me not knowing what's going to happen with it.
Then there's the whole issue of making sure they both get their homework done AND actually LEARN what they need to learn. I don't know why curriculum night stressed me out so much more this year than it did last year except that this year, I'm getting adequate sleep and my brain is actually capable of functioning enough to know that it SHOULD be stressed about the kids' education. :)
On top of all of the pressure of making sure the older kids' needs are met, we're now supposed to be offering Raya food 5 times a day, not letting her eat snacks except for at her 2 snack times, calculating how many calories she swallows, and then filling in the rest with formula for the 5 feed times. I am still trying to figure out how to do that when we can't just be at home all day long, especially when it involves the meals of pureed food. Ever since Raya started to have problems, I have felt like just when we get settled into a comfortable routine with her feeding schedule, something forces us to make a change. We had just gotten into a good routine with her after a few weeks of adjusting to the G tube/gastric feeds and now we're making some of the biggest changes we've ever made by counting actual food into her diet. THAT has been mildly challenging, to say the least. I have, however, calculated out how many calories per tablespoon are in the oatmeal & raisins and the beans I've been giving her and that makes it a lot easier to guess how much she's eating. So that's been a lot to deal with over the past week or 2.
Then there's that poor, neglected little kid #3 who spent last year being bounced around to different friends & family members during Raya's many appointments and her hospital stays. She goes with us to OT and gets jealous if there's something she wants to play with that she can't because Raya's therapist is working with her on it. I'm trying to devote special time to her each day now that the big kids are back in school so she'll know that she's important too. We've been doing it either while Raya's strapped into her high chair for a feed or else when she's taking a nap, although I really need naptime to do some of the things I can't do with her around. What I REALLY need is a cage... KIDDING!! (sort of)
So anyway, all of that was weighing very heavily on me Tuesday night and I was not feeling equal to my tasks. I spent a long time on my knees praying before I went to bed that night. I went to bed already feeling lighter after sharing my burdens with the Lord. I have learned that when I feel like my life is getting out of control, the best thing I can do is let go of the things I can't control and take charge of the things I can.
That was the way I felt when I woke up on Wednesday and I know it was God's way of picking me back up and dusting me off and helping me feel like I can handle everything. I got SO much accomplished on Wednesday. Raya's PT came early that morning, so we were done with PT by 9:00. I canned 7 pints of chicken, made 1 batch of homemade salsa and froze the veggies to make another batch, made homemade whole wheat graham crackers (with wheat that I ground myself in the wheat grinder), made dough for homemade tortillas, cooked a batch of pinto beans (with onions from our garden), bagged up the raspberries that were on cookie sheets in the freezer, cooked the tortillas, gave Raya 2 good meals that she actually ate most of (oatmeal & beans), fed the kids dinner, and then PATIENTLY sat for over an hour helping Ashtyn with her homework (that in itself is a HUGE accomplishment for me because I am not the most patient homework helper!). By the time I went to bed that night, I was feeling SO good about myself and I was so thankful that I had that boost of confidence to help get me back on track.

Life is NOT easy.

Teaching a 21 month old to eat after over a year of not eating is hard. Letting her do it herself is hard. Cleaning up mess after mess after mess is hard. Feeling like a failure when she doesn't eat is hard. Going along with a feeding plan that I don't totally understand or *gulp* agree with is hard. Not giving in to the sometimes overwhelming desire to throw in the towel and go back to 100% tube feeds is HARD. (especially while chiseling dried oatmeal off the kitchen floor)

But the point is not for things to be easy.

There's a song that says, "Sometimes the hard thing and the right thing are the same." This is hard, but it's also right. Someday, this will all be over and all that will be left are memories and a little round scar on her belly. I think the scars in my heart will have faded more by then. And it will have been worth ALL of this.


  1. Wow Brandis. You are super mom even though you don't feel like it. I admire you a lot!


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