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A Dose of Reality

Yesterday and today have been difficult. It's been more in a string of days full of slap-in-the-face reality checks. Not that there was any particular terrible incident or anything, just a difficult and exhausting day yesterday and less of the same today.

Since last fall, we have had the privilege of having the most wonderful respite provider for Raya who is willing and able to come on Sundays to stay with Raya while we go to church. This has allowed us to minimize her exposure to illnesses & infections and the risk of accident or injury involving her G tube, not to mention the great pleasure of getting to sit through church and actually listen instead of wrestling with a busy toddler. To be perfectly honest, I have loved being able to leave her home. The other 3 kids are so well behaved during church that we really do get to just sit and listen. It's been exactly the break from reality that I've needed and I usually come home feeling recharged. Last Sunday and yesterday our respite provider wasn't able to be here so Raya went to church with us. The service lasts 3 hours with the whole congregation in the chapel for the first hour and then divided into classes the 2nd and 3rd hours. Normally a child Raya's age would go to the nursery class for the 2nd and 3rd hours of church but we don't feel like nursery is a good place for her to be at this point for many reasons so she stays in the adult classes instead.

She started the day off on the wrong foot yesterday. She woke up at the crack of dawn like always and was tired and crabby by 8:00. In the rush of getting everyone ready for church, I had to throw her meds, pump bag and formula into my bag on the way out the door instead of giving it to her earlier. I offered her one of her special pancakes but she didn't want it. I heard her stomach growl and she said, "That was just my stomach. Hee hee." I asked her if she was hungry and she said no. I told her that when her stomach makes that sound it means that it's hungry. She got upset and yelled, "I'm NOT hungry!" Again, this just reconfirms my suspicions that she is very confused about the meanings of the sensations she's feeling.

Off and on, she was excited and then protested going to church. When we sat down, she sat at the other end of the row from Donny and me because she wanted to sit by Ashtyn. Before I realized it was happening, the person passing the Sacrament bread let Raya have a piece. Not that one piece of bread is the end of the world but there went our efforts for complete avoidance of wheat. After that, I took her to the mothers' room to give her meds and connect her first feed for the day. I sat her down on a chair and got her extension tube and meds out and she immediately grabbed her tube and started telling me she didn't want "to be plugged". It's her new favorite thing to say (yell) when I'm trying to put anything in her tube. I didn't want to start a fight already since we'd been there for all of 15 minutes at that point and there was a lady in there trying to feed her baby, so I gave her the little baggie of "marsh-a-mellows" that I brought for her. That worked and she let me do what I needed to do. Because we weren't at home and I have yet to figure out a good way to get Farrell bags to work for her outside of the house, I didn't use one. I didn't think it would be an issue. I really wish I knew why her little body is all of a sudden having trouble tolerating her feeds but that's another post for another day.

After the first hour of church, we went to the Sunday School class. Raya insisted on having her own chair so she got to claim the one in between Donny and me. I'd say she sat on the one in between us but she didn't do much sitting. One thing that I've come to understand about her is that when she's in an unfamiliar environment, especially one as noisy and visually busy as church, she has a difficult time coping with everything that's going on. Many times last week and yesterday, I couldn't help but think that maybe if we had been taking her to church all along, she'd be able to handle being there better. I didn't spend much time entertaining that thought though because I know without a doubt that if we had been bringing her all this time, she would have gotten sick much more often and she's been better off being able to maintain a consistent nap schedule that would have been interrupted by our church schedule. Anyway, I could tell from the beginning of Sunday School that she was not going to last all the way through church. She kept saying she was tired and wanted to lay down on my lap but when she gets overstimulated (like how she gets when we bring her to church), she canNOT be still. I'm not saying I expected her to sit still for 3 hours, but there was not one second that her body was not wiggling or squirming in some way. When I checked how much formula was in her stomach 3 1/2 hours after her feed, I understood where some of that squirminess was coming from but it was definitely also a result of being overwhelmed by her environment.

She behaved just about as well as anyone could ask of a 2 year old in Sunday school but was getting really restless by the end. In order to help her get ready for the next hour of church, I held her hand and had her jump down the hallway. I was hoping it might help calm her system a little. I had tried stroking her back when she was laying on my lap in Sunday school but after 3 or 4 rubs, she would push my hand away and say, "Stop touching me!" just loudly enough that everybody around us could hear her.

I really thought she'd relax a little more during the last hour of church since we were in a smaller room on nice soft chairs. She didn't though. By that point she was tired and fighting sleep so she dumped all her toys on the floor, danced around, wouldn't whisper when she talked to me, was climbing up & down, and just generally making too much noise. She climbed up on the chair and wanted to lay on my lap but I told her to grab the little car that was sitting on the floor in the aisle so nobody tripped over it. That was apparently too much to ask. Instead of doing that, she wanted to stand on the hymnal that was on the floor and when I told her to get off of it, she got her feelings hurt and flopped down on the floor. I decided we were done and started picking up her toys, which then cued the yelling. "Mommy! I want my toys to stand up!" repeated over and over again until I carried her and all of our stuff out of the room. From then on, there was no communicating with her and I was too tired to try and wrestle with a 30+ pound kid to enforce the same kind of behavior we have always expected out of our other 3 kids at church. She and I spent the rest of the time in the hallway where I chatted with friends that I haven't seen in a long time.

Sometimes I imagine that people probably wonder why she's in class with us instead of the nursery and maybe even why we let her "get away with" the things she does. Yesterday, I didn't really give a crap what anybody else was wondering about or thinking. I wish I could say that's the case all the time but it's not. It comes & goes like that. I'm so grateful to be back in the same neighborhood and going to church with a lot of the same people who knew us when Raya was born and through the bumpy ride of her first year. It makes it a lot easier for me to handle the emotional stress of taking her to church and trying but failing to make her behave like I want her to and like her older siblings did when they were her age. By the time we left to go home (making our way through the droves of people in the hallways) we were to the point of carrying her against her will and she was kicking & screaming the whole way because she wanted to walk (which would have been jumping, running, tripping, running into people, getting knocked down, stopping 15 times do look at things and forgetting what she was supposed to be doing, etc.).

We hoped she'd fall asleep on the way home even though we knew she wouldn't. Donny and I needed to go back to the church a little later for a few minutes so we took Raya with us, again hoping she'd fall asleep in the car. We put her in her stroller & I was going to vent her with a bolus extension & syringe before connecting the feed. Seeing me coming toward her with an extension tube made her upset and she covered her tube, hunched over and started crying and telling me "no". We were in the presence of several other adults and once again, I felt like we had become a circus act. To make things worse, when I did get the tube connected and vent her stomach, over an ounce of undigested formula came out immediately. That meant that the feed from 3 1/2 hours earlier had not cleared out of her stomach yet. (Probably the reason she felt yucky & didn't want me to connect her feed.) I connected her feed anyway (with her yelling, "I don't WANNA be plug-ded!" the whole time) and this time, used a Farrell bag to help relieve the pressure in her stomach. Then I had to take her outside and let her calm down so we could stop being so disruptive. She kept crying until I caved and let her watch Backyardigans on my phone. I hate doing that but she needed something to pull her out of her meltdown and Backyardigans almost always works.

She calmed down and we finished up and went home. When we got there, she wanted to keep watching it so I let her take my phone in our room and lay on our bed with her blanket. I had to hang the Farrell bag somewhere so it ended up hanging from a screw up above our bed. It looked ridiculous and was much higher than the ideal hanging height but there was nothing else to hang it on at the moment so it worked well enough. Within about 15 minutes, she was out for the count.
I normally don't take pictures of her with my real camera when she's sleeping because I'm afraid the sound of the shutter will wake her up. It sounds so quiet any other time but when I'm taking pictures of my sleeping girl, it may as well be a freight train. Thankfully she didn't wake up and I got a couple. I love her dearly when she's awake, but it always makes my heart happy to see her sleeping comfortably and peacefully, especially when I know how badly she needs it.

After her nap, she was just as sweet and pleasant as could be. She was happy, rested, and ready to interact with everybody. This is not always the case when she wakes up from naps, so when she wakes up happy it's a special treat. :) She played with the big kids and we watched a couple of our Halloween favorites (Hocus Pocus and The Canterville Ghost, 1987 version) and had dinner. She tried a piece or two of yellow squash but wasn't impressed so she just ate ice cubes for dinner. We tried her new bedtime routine that her OT wrote up for her and then put her in bed. She still didn't go to sleep right away but once she's in her bed at night, she's content & we're just ready for her to be in bed.

See why I'm exhausted and questioning my judgement in taking on 7 credits' worth of very time-consuming online classes in very involved subjects? I love her dearly with all my heart but she's really wearing me out lately, especially when we go out in public. Not in the sleep-deprivation way that taking care of her when we were doing things around the clock with her, but more of an emotional and mental exhaustion. And a little bit physical too. She's getting bigger and struggling with her is getting harder. It would undoubtedly be easier for me to be taking in-person classes where I could just sit and listen to the lecture and take notes instead of trying to read the lecture with kids climbing all over me and wanting to be squeezed every 5 minutes (and/or climbing on the counters to stuff her face with marshmallows) but that's just not an option right now.


  1. I'm exhausted just reading this!! I understand about the hours of church and dragging a tubie-toddler. We have yet to do that with Ian either. I often wonder what people think in public when we need to do things. I must say, the Farrell Valve on the wall was pretty darn cute! I also love to watch Ian sleep. It;s nice to see them calm, happy, and at peace..... without distress. Keep moving on like you do and each day will bring new answers (hopefully the correct test answers!) :)


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