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Friday, December 21, 2012

Focusing on the positive

Today, I'm trying to focus on the positive. My mood recently has been rather negative in general. Lots of frustration, other people making mistakes that cost ME time & energy, people interjecting their opinions about our family's decisions for Raya where they're not welcome, too much time required on the things I HAVE to do, and not enough time to focus on the things that I WANT to do. However, in the midst of a very frustrating and difficult week, there have been bright spots. Here are a few of them. In a bulleted list. Because I like bulleted lists.
  • Raya has gone to sleep by 8:00 every night this week, and usually earlier. She's calm, relaxed, and content in the evenings in spite of being sick. She's also been surprisingly sweet and pleasant considering that she's feeling yucky. Regardless of the negative opinions we've been given, our choice to try something to help her sleep has been a huge help to her this week as she is fighting this cold. Without adequate sleep, the body won't heal or fight off illness as effectively, so the timing on this has been a blessing.
  • Because she's been congested and has had terrible post-nasal drip that makes her gag (which is NOT a bright spot), she and I have had a lot of snuggle time on the couch this week. The last 4 nights in a row. Due to her sensory issues, she has strict rules when it comes to people touching her. I'm generally not allowed to touch her with my hands or feet while we snuggle, but just laying close to her warms my heart and soothes my soul. My grades are suffering due to the lack of study time, but it's completely worth it. (or at least that's what I keep telling my inner perfectionist that REALLY wants to get all A's...)
  • She is learning to cough things up rather than to gag on them. This is HUGE, especially with her having the aforementioned post-nasal drip gagging in addition to gagging on food. She had a nibble of a hamburger patty this afternoon and started to gag but then forced it back to the front of her mouth so she could spit it out. I am so proud of her for that. (and I'm being completely serious)
  • Raya+preschool=ADORABLE. I've only gotten to go to her class twice so far but I love seeing her in that environment. She's starting to learn the names of some of the kids in her class and they're learning hers. She tries to tell me stories (that she thinks are hilarious) about things that happened at school. They never make any sense to me but I love it. I love spending time with her in an environment that is not our house or therapy/doctor's office, because that's really the only places we ever go together. At school, I get to do fun things with her. At her class party yesterday, I helped her decorate a sugar cone with green frosting and sprinkles to make it into a Christmas tree. She was allergic to all of the activities but since I was right there with her and helped her scrub her hands after, I felt like this one was okay. (I could say more, but we're focusing on the positive...) She had a good time with it and I love to see her happy.

You can tell when she's really concentrating on something because her torticollis reappears. Notice how her head is tilted to the left in that picture. :) When I see that, it's a reminder for me of how far she's come.
On Wednesday, she came home with this little gem that I will treasure forever and ever:
I love EVERYTHING about this picture. For some reason, seeing her with her backpack on makes me so proud of her. Carrying that thing around has GOT to be annoying but she rarely ever complains now that she's used to it again. That little black backpack has been such a huge part of her life and I'm glad she's wearing it in the picture.
  • She is learning to say things like, "Wheat makes me sick." and "Milk makes my tummy hurt." She's learning to say no to a few things that she knows she can't have. Unfortunately we have a LOOOOOOOOONG way to go with that, but it makes me happy to hear her repeat phrases that will help to keep her safe.
  • We found her some crackers that are free of anything she's allergic to! I wanted to jump up and down. So far, all the gluten free crackers I've found are made with rice flour. Just about everything that's marketed as gluten free has at least some rice flour in it, and a lot of them have 2 or 3 different kinds of rice flour. It's really hard to find things she can have so I'm excited. She was too. She hugged the box the rest of the time we were at the store. :)
  • The big kids sang in a community Christmas choir last night and they did a great job. That was definitely a bright spot in my week. Ashtyn had a solo and did a beautiful job on it. They looked great too. I am very blessed with such helpful kids. They don't always like helping with housework, but they are getting better and better at it and their willingness to help is improving too.
  • Raya's stoma improved with the silver nitrate treatment that the surgeon did on Tuesday. By today it was looking pretty yucky again and needed another treatment, but I'm feeling a little more optimistic about her stoma healing over better than it was before the scar tissue removal.
  • Being able to lean on other special needs mommas has saved my sanity this week. 'Nuff said.
  • As irritating as it was to have the delivery of the yet-to-be-delivered catheter bags messed up for the second time in a row, it was pretty darn funny to get a big box of 20 latex catheter kits instead of 3 little catheter leg bags. Not quite as funny as the 3 pairs of diabetic socks but still funny. Or at least it will be funny once they fix the error and bring the catheter bags.
  • I had a very productive discussion with the principal about making an addendum to Raya's IEP that I think will be in everybody's best interest. It's such a huge relief to know that the administration is approachable, and is willing to look at alternatives and try to come up with the solution that best suits the student's needs. We'll be having a formal meeting after the break to make the addendum.
  • Even though they sometimes push my buttons and make me crazy, I am so very grateful for my kids. They make me feel important, loved, and appreciated (thanks to a wonderful husband/father who teaches them well) and they are so easy to please. They are not demanding and they are happy with what they have in life.
  • Rather than my usual grin-and-bear-it, I have actually made comments in rebuttal when certain subjects have come up with members of her health care team this week. Disagreeing with medical professionals is not something that occurs to a lot of people, nor do most people have the courage to do it. I don't know if this is a matter of courage or just lowered inhibitions because I'm too tired to care, but it's actually pretty empowering to know that I have a right to disagree and feel good about the informed decisions that I make, and to speak up for myself.
  • My girl is TOUGH. For 2 1/2 weeks now, I've been changing the dressing on her stoma at least twice a day just to keep it clean. It's sore and it hurts her. She doesn't like it, but she (for the most part) lets me do it anyway. Tonight when I had to do another silver nitrate treatment, I explained to her beforehand that I needed to put some of the medicine on that her surgeon had put on. She knew it was going to hurt but I told her she could have a marshmallow when she was done and she agreed to let me do it. She let Cole help her keep her hands out of the way and let me hold her legs down while I basically burned an open wound on her stomach. She yelled a little but she didn't cry, and she gave me a hug afterward and told me "Thank you, Mommy." She is amazing.
  • And last but not least, I had lunch with one of my dearest friends this week to celebrate our birthdays, and another dear friend volunteered out of the blue to come babysit for me Monday afternoon so I could go run a few errands by myself. It was WONDERFUL. Another sweet friend let Kaida come over while I went to Raya's class yesterday and kept her for part of the afternoon so I could get Raya to take a nap. I have really, really nice friends.
So amidst the crap that has gone on this week, there have been some really sweet moments that have made me forget (if only momentarily) about the crap. My Heavenly Father is merciful in giving me those moments that help me remember what is really important. Maybe it's because some of the things that have happened this week have made me feel like it's me (and Donny) and Raya against the world, but I have felt the healthier part of my bond with Raya get stronger this week. Tonight I took her to the store with me and as we were driving, the song I used in this video for last year's Feeding Tube Awareness Week came on the radio. From the very first time I heard it, the lyrics have been so powerful for me. "I won't give up on us, even if the sky gets rough. I'm giving you all my love, I'm still looking up...When you're needing your space to do some navigating, I'll be here patiently waiting to see what you find...God knows we're worth it..." It makes me cry almost every time I hear it. The things I've been dealing with this week have made me overly emotional anyway, so I was full on ugly crying by the time I pulled into the Costco parking lot. Partly because I've watched the video so many times that I can see the pictures of her in my head as I listen to the song, but also because it reminds me why we are working hard at the things we're doing even when we don't feel like doing them. It reminds me why I need to be more patient and work harder. It reminds me that just because we make mistakes along the way doesn't mean that we've failed, and that even though the road ahead seems endless, we're still moving forward (most days). It reminds me that I am not in this alone and that I don't have to have all the answers right now. It reminds me why I have chosen to subject myself to scrutiny and criticism that sometimes come from making our story public. I know it's incredibly cheesy to say that all of that comes from the lyrics of a song, but it's true and I'm so thankful for that.

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