Saturday, May 12, 2012

School is Cool

With the exception of Aviana freaking out before the bus ride on the second day of school, she has done amazingly well. I do think she was faking it that day though. I was taking Rainey up to the park immediately after seeing her off, and really wished I had earplugs, as I could hear her screams all the way down the street. I'm sure she stopped the moment I was out of earshot, smiled to herself and thought, "I bet that did the trick." She's such a devious little Miki!

Really, school has been an absolute blessing. I was slightly skeptical. I'm sure you could tell by the way I only put her in for two days a week. Our good friends ~ Shauna and Dixie, were huge proponents in our decision making process. I so love you both for calming my nerves about the whole thing!! I'm so happy we listened to them and most importantly, trusted the process. At this point and time, I do feel this was one of the single best decisions we could have made for Aviana.

Aviana's teacher and speech therapist, both Kathys, had come to the house to learn how to feed Aviana prior to school starting. They called last Friday and asked if I could come in and show them again this past Thursday. If I'm being quite honest, feeding truly sucks for all involved. I know you've heard me talk about my g-tube fantasies on here before ; ) It's definitely one of our biggest challenges, so much so, that we are going to see a pediatric behavioral psychologist to "break this stallion!" ; ) Anyway, my mom and I went in and met all of the staff. They are all amazing. I couldn't have dreamed up better people if I tried...all of them.  I feel blessed beyond measure to have Aviana surrounded in these teachers, and kids too. They are caring, compassionate, loving, people. It was more than obvious, they are all there for the right reasons. I think all good teachers are amazing, as it is a job I would never be able to do. I'm not sure though if there are any larger hearts, than those who work with a room of severely special needs. My gosh, not just my hats off to you, but everything. I wanted nothing more than to help them whenever I can in the classroom too! The kids, the kids, the heart a puddle! They were each so beautiful! 

Anyway, since Aviana got out of the hospital and was recovering from her multiple surgeries, we gave up The Institute program in its entirety. We even put the patterning table away. It was such a weird feeling, much like a death of sorts. Dave asked me if it was temporary and I wasn't sure how to answer at the time. Something just doesn't feel quite right anymore though. We have to go with our gut from here on out, and I feel we have been going against it. More like going through the motions. I have to do what's right for Aviana and what makes her happy from now on. The program was not making any of us happy.  I look around this huge classroom of hers, full of swings, and stations, and music, and activities, and paint, and kids, and different, happy faces, and therapy too, and I smile inside and out. And the thing is....while Aviana can't smile outwardly, I know she is smiling inwardly. 

The bottom line is....gosh this is so hard for me to write. Dave and I had to have a really difficult conversation and that was, we don't know how long we are going to have Aviana, but however long that is ~ we are going to make sure she enjoys her life. We did what we had to do with the program. We put in 200% to see if we could get some sort of recovery for her, and we all know what happened with that. Now, it's about doing the things that make her happy. Riding the bus, going to school, going to the park, going out to the mall, doing hippotherapy, going to the beach, going on drives to Tahoe, going on field trips and lunch dates with Uncle Roger, etc. All we are going to do is keep her body in working order, but there will be no more back breaking amounts of therapy around here. We almost lost her last month. In those horrific moments, I thought ~ oh my GOD...she hasn't lived since the accident!!! Needless to say, we are soon going to increase to a third day at school, too : )

Another thing, when you have a child who can't do, or reach, or play, or move, you are fully responsible to entertain. I feel so much pressure throughout the day to be everything for her. When we were doing the program it was different, because I did not have one moment to breathe, as I was dragging her from this to that. But now, if I am not with her, reading to her, or feeding her, or if my mom, or someone else is not with her, I feel guilty. I'm not saying she can't sit by herself. I'm saying, if I am busy doing something for an extended period of time, she has no means to entertain herself, and sometimes, I turn around, or round the corner and she has fallen over. My heart breaks a little more each time. I know every kid, whether hurt or not, needs attention, but before the accident, she could entertain herself to some degree. I didn't feel the pressure I feel now. I can't explain what it feels like when I look over at her, and she can't move, or reach and she is just staring out the window, bored out of her gourd. It rips me up. I need help. The school helps me with this. The school takes some of the weight off my shoulders. They share it with me. I appreciate them. They actually do so much that I can't possibly do! They have so much to offer Aviana. My gosh...I am so impressed! They send me pictures and texts throughout the day. How sweet is that?

It may not look like it, but this is the one she liked most. She was to hit the switch if she wanted the video to play more. They said she hit it once. Sandy and Danny will do that to you, right? They will make a little girl hit that purple switch!

Avi made me a Mother's Day gift!

Aviana's new backpack. The ladybug was so yesterday.

School makes a girl a little sleepy. We usually keep her up way too late, so we've been trying to get her to bed earlier!

Young school girl....

you melt a momma!


  1. OMG! That made me cry....because I'm so happy for her and for you. I was so sure you'd love school, but you know how there's a little piece of you that says, "What if I'm wrong?". I'm so glad I wasn't this time. I really believe that learning takes place in lots of places and with different people so I think this was the perfect time for a transition for Avi.

    Maybe she doesn't smile in the conventional way, but I think you can see a smile on her face. She looks very pleased with her life.

    I have one more suggestion and then I'll shut up. Someday, take them a pie. I've never known a group of teachers who don't love a snack.


  2. That was such an amazing post! So much love and emotion. Aviana looks SO CUTE in every outfit!!!

    Teachers are amazing. I am in awe of them. I love every single teacher my kids have had. I still stop in to see Asa's Kindergarten teacher about once a week. They have something nobody else has. I know I don't have it, I couldn't handle teaching 20 other kids every day. There are times I don't even like my own kids much less other people's kids!

    I love teachers. The good ones. And the thing is the good ones far outweigh the bad ones, it's just that when there is a bad one they get all the attention and all the good ones have to take all the crap.

    Teachers are amazing.

  3. I am a special education teacher and absolutely love my job and often wondered when Aviana would start school. I am so excited that it is going well.

  4. Hi,
    My name is Angela and I have been following your blog for some time now. I found out about your blog through another mother who has a little girl with severe disabilities. I have to say that I so enjoy reading and learning about Aviana.

    I have twin boys who are 4 years old. Prior to having my twins I was a teacher for high school special education students for nine years. My students were moderate to severe cognitively disabled.

    My heart skipped a beat when I saw your post about Aviana going to school for the first time. I was so happy to see that she was going to experience school for the first time. I knew that she would love it and I knew the classroom would offer her lots of wonderful educational opportunities and experiences. I am so happy to see that she loves it as do you and your husband. School will be able to offer her so much as there are so many new gadgets, curriculum, technologies, adaptive equipment, etc out there to expose her to.

    Lean on those teachers and other professionals that help Aviana and ask them for help, guidance, and support. Teachers love to share what they know and love to help their students. I am sure they will come up with a ton of ideas for things for you to do at home and give you lots of catalogs to look through for ideas.  I know I loved to share with my parents what worked at school for their child and could possibly work at home.

    I so miss my students each day and hope to one day go back. My students have taught me so much and are such special people that God has put on this earth.

    Thanks for taking the time to post updates in your blog. You have a wonderful way of writing. Thanks also for sharing your beautiful, bright and sweet daughter with us.

    Happy Mothers day to you!

  5. My Momma heart is happy and full reading this post! I LOVE that Avi is going to school! I LOVE that Avi wanted to hear more Grease (a girl after my own heart!)! Most of all....I LOVE that it seems you have reached a new level of healing for Avi and for you. I have had the exact same conversation and realization regarding lifespan. If Christian is going to have a shorter life, I'm making sure he has the opportunity to enjoy the hell out of it as much as his little heart can possibly enjoy. Sounds like you guys have joined the club.

    You know what I hear in this post? Relief and hope. I don't hear frustration or sadness. I hear a lot of hope. I am relieved and hopeful right along with you! I think I might also hear your heart healing, too.

    Love you, girl! And a very happy mother's day to you.

    P.s. I just wrote about you, too!

  6. Dear Jen,
    I don't have much more to say that others already have not. Seeing the pictures of Avi at school and reading your words about the experience filled me with joy. Love the new backpack. Craving a strawberry rhubarb pie.


  7. School is awesome!!! You are so lucky to have such a caring place to send her. I know that she loves it. I am so excited for her! She looks soooo adorable in the pictures!

  8. I shared Avi's story with my colleagues months ago at our pediatric rounds. It made us all SO thrilled to hear she is in school. Her little face still warms my heart so much and I am so happy to see she is doing well with school!

  9. I am so glad you put in the 200% and now are making life fun, for everyone's sake. Thats neat that school is going so well, how wonderful for her to be basically back in the kid society.

  10. My sister teaches special ed. Those teachers are something else. :) It looks like Avi is having a good time at school. It sounds like you have a lot of fun things planned. Enjoy it, mama!

  11. Whoops! Make that my cousin. My sisters teach 1st graders. :)

  12. Wow - Avi's school does look COOL! It sounds like there's a lot of new experiences waiting for her there. (Sorry my comment is a few days late)

  13. I agree with Shauna - I love the way YOU sound in this post! And I'm thrilled at how school is going for her. Love the bit about Grease too! Who doesn't love grease? I really love having school for Cici too - bus and all - and she comes home happy every day! So thrilled for you all!